JonahDiabetic

New Supplies

2012-01-28T23:19:00.003-06:00

I ordered new supplies last week. I received 3 boxes of 90 syringes, 2 boxes each with 1 vial of Novolin R, 1 box with 5 Lantus Solostar pens, and 8 boxes containing one vial of fifty Accu Chek Aviva Plus Test Strips.

The Accu Chek Aviva Plus test strips are new to me, although I heard about them a few weeks ago- the person I heard about them from is in the UK where apparently they've been out for a while. They use a different blood sugar measuring technique, one that doesn't cause falsely elevated readings in people who have high blood levels of non-glucose sugars. I'm a bit concerned about whether this means that the strips will have a different level of accuracy overall as compared to the old strips. I may do a comparison run between strips at some point but not now. Here's a picture of the boxes:

It's always interesting to me to see what insurance asks me to pay, and what they pay, given that it's a new year and they're always changing these things. This year I seem to be paying a flat fifty dollars per prescription. So for the syringes, I paid $50 and insurance paid $10.41; for the Novolin R I paid $50 and insurance paid $75.41; for the Lantus I paid $50 and insurance paid $146.39; for the test strips I paid $50 and insurance paid $342.02.
I'll probably be getting four shipments of syringes this year (maybe five, actually- my prescription isn't for enough syringes), four shipments of Novolin R, three shipments of Lantus (I am supposedly getting three month supplies, but they send me a box of five pens and each pen lasts a month), four of test strips. I have a stockpile of pen needles that will last me a year at the current rate of one per day, and I have enough lancets to last at least another year at my current rate of about one per day. I will probably be getting another glucagon this year. I pay for my testosterone without insurance. So that means that if I use the same meds this year as last year, my total cost, not including Dexcom or testosterone, should come to $800. That's affordable.

Without insurance, the costs for these things would be somewhat different anyhow, but at these rates:
the syringes cost $20.17/box and I'd use at least a box per month ~ $245 for the year
the Novolin R cost $62.70/vial and I'd use roughly eight per year ~ $501 for the year
the Lantus Solostars cost $39.27/pen, and I'd use one per month ~ $472 for the year
the test strips cost $49 per vial, and I'd use at least 24 per year ~ $1176 for the year
one glucagon kit is about 90
So without insurance, this lot would cost me ~ $2484, still doable, but not easily. Although of course if I really had no prescription insurance, I would be able to get everything except the test strips for free, so my costs would actually be just the $1176.

By the way, I've finally written up the November facts for this year and put them with last year's on a page you can view above the posts.

The False Premise Underlying Glycomark

2012-01-26T22:49:00.003-06:00

The GlycoMark company is a joint venture which, according to its website, is "dedicated to the discovery and commercialization of novel biomarkers for diabetes."

So far it has marketed exactly one such biomarker, often called the GlycoMark test. It has been on the market for roughly twenty years but I've only known a couple of people who tell me their endos order the test regularly; mine never has. The test sort of interested me when I first heard about; you can test just the time spent high? Well, sort of. The wikipedia article on the GlycoMark test* (and the wikipedia article on the A1c test*) read like an ad for GlycoMark. I will summarize what they say.

According to these articles, there is a substance in the body that is excreted when the body excretes sugar, which is at 180 mg/dl. Therefore, people who spend much time with blood sugar have lower levels of this substance (1,5 AG). Therefore, the Glycomark test can tell you if a person's A1c of, say, 6% is because the person had near constant blood sugars between 110 and 170, or if the person's 6% represents blood sugars bouncing between 60 and 320. A Glycomark score in the normal range means the person has blood sugars below 180 almost all of the time, and progressively lower glycomark scores mean more and more time above below 180.

The Glycomark website hints at the problem with this interpretation of the GlycoMark. First of all, if the glycomark score declines with time spent over the renal threshhold, great. But to say that the renal threshhold is "usually >180 mg/dL" is disingenous. Yes, the renal threshhold is often above 180 (although a renal threshhold of 160, say, would not be unusual). But the renal threshhold can also be above 280. And there's TREMENDOUS variation in renal threshhold, between individuals, and even in the same individual at different times.
A secondary and less problematic issue is that the glycomark depends on something which has a wide normal range to begin with. Two nondiabetics could have significantly different glycomark scores.

And while knowing whether or not your blood sugar has been above your renal threshhold MIGHT be important (there's some evidence that kidney damage happens at that threshhold), you can find that out by testing your urine for sugar. I bought 100 urine sugar test strips last year for $15. One glycomark blood test costs, online, $53. Rough choice? I don't think so.

*As accessed today, Jan 26, 2012.

When Do Complications Matter?

2012-01-23T22:02:00.002-06:00

One thing I can't help noticing in reading about diabetes complications is this: when researchers or writers want to use real data to make it sound like most diabetics don't have x complication, they talk about the most severe forms of it. For instance, instead of talking about diabetics with retinopathy, they talk about diabetics who are blind, have proliferative retinopathy, or whose retinopathy is rated severe. On the other hand, when researchers want to talk about how common some complication is, they include every form of it, for instance, mild retinopathy found on a fundus camera, or even "pre-retinopathy".

This confuses a lot of people. One prominent member of the diabetes online community has repeatedly used two studies to claim that diabetes no longer threatens lives, in a totally erroneous way. One study looked at the frequency of end stage renal failure in diabetics diagnosed at various ages, over roughly twenty years; the other looked at risk of death in diabetics in the first twenty years past diagnosis based on the presence of any kidney disease.
The observed deaths for those with no kidney disease whatsoever in the first twenty years past diagnosis was pretty much the same as for nondiabetics. The observed incidence of kidney failure in the first twenty years past diagnosis for those diagnosed under the age of 5 was nonexistant.
So this guy says, tada, diabetics without kidney disease don't die early, our kids don't get kidney disease, therefore they don't die early.

Problem? The first study defined diabetic kidney fairly broadly (they could have probably been even more broad) as any two positive microalbumin urine tests over the study period. That included just over 70% of the group. A very small portion actually had kidney failure.
The second study didn't look at kidney disease, just kidney failure.
The other problem, of course, was that it only looks at a twenty year period. If I live 25 years past diagnosis, I'll be dying young. Diabetes is definitely capable of killing a person 30, 40, 50 years past diagnosis.

Anyways, another online person recently ranted about somebody who said that retinopathy was common in type 1 diabetics, about how that person was an ignorant so and so, that these days it's not. Well... retinopathy is common in type 1 diabetics. Even in teens. Averaging a handful of European, American, and an Australian study on what portion of teenagers living with type 1 diabetes have retinopathy as shown by a fundus camera, the rate is roughly 1 in 7 boys with type 1 diabetes and 1 in 11 girls. And that's been pretty stable for over twenty years. Looking specifically at studies of teenagers who'd had diabetes for more than five years, the rates jump up to more than one third of teens with type 1 diabetes. Looking at adults, the numbers are considerably worse; in most studies, by fifteen years, the majority of participants have retinopathy.
This was even true in a study of Swiss adults diagnosed as young adults/older teens, diagnosed less than 20 years ago, tested for retinopathy 12-15 years past diagnosis. Their average A1c was 7.0% and the portion with any retinopathy was 61%.

The overwhelming evidence is that an A1c in the recommended range is not enough to prevent some complications, even though it makes them slighly less likely to occur and far less likely to progress to the point where it, say, makes you blind.

So the question in my mind, as I read these studies, is this: if I develop mild retinopathy, does it matter? As long as it doesn't impair our vision, should we care? The majority of type 1 diabetics, even with the best control they are likely to be able to achieve, develop some degree of retinopathy. Detecting retinopathy is of some importance because some types can be treated to prevent vision loss. But is it important to know about retinopathy if what you've got is very unlikely to progress? Why bother testing for the most minor degrees of retinopathy? Why look at "pre-retinopathy"?

Similarly, there's a nerve conduction test that's sensitive for neuropathy. It hurts. So the question is, what's the point of that? After enough years with diabetes, most of us will show up as impaired on a nerve conduction test. If it doesn't bother us, why test it? And if we are symptomatic, well, 80%-90% of us have some neuropathy after twenty years, so why not go ahead and pretend we've alredy done the darn test? Isn't what matters whether I can feel the things I need to feel and that my nerves don't hurt?

There's a part of me that thinks it's interesting that diabetes affects bodies in such difficult to see ways. A part of me that thinks it's neat and worthwhile to know all the ways in which my body is likely to be different from the bodies around me. There's a part of me that hopes that this knowledge could explain some cool things. But I have a large suspicion that the researchers will not use the knowledge that early diabetic changes can be seen in kidney biopsies or that various tests show diabetes in eyes in order to praise the variety of God's creation. I really don't think that's what they have in mind at all.
I figure that what they'll use it for is
to show that the way we
take care of our bodies
is not good enough,
that we need
more medical services
that only they can provide;
more self control
more shame
that we are
different
not as good.
Even if
we thought
we were doing
just fine,
they say it's
not good enough.

So I ask you;
if my eyes see,
are they good enough?
if my kidneys pee,
are they good enough?
if my heart beats,
is it good enough?

Can I get a second opinion!

Is the goal of diabetes treatment,
to make my body just like your?
Is the goal of diabetes treatment,
to make my blood sugar normal?
Or is the goal of diabetes treatment,
to keep me living long and feeling good?

Can I get a second opinion!

FYI, I like my doctors fine and have no diagnosed complications, nor any worth diagnosing.

What I Found At the Dollar Store

2012-01-22T20:44:00.002-06:00

It was originally an armband, and I thought it would fit the Dexcom. It does. It has a little graphic on it that seems to indicate it's for some music system and has a small flap for putting a tube through (when I noticed that, I figured it would be perfect if I had an insulin pump). I took the armband part out and have been wearing it on my belt. It has a few advantages over the cases that came with the Dexcom. For instance, the part that I put in on my belt with is a loop, not a clip, so there's no chance of it falling off. And if I really want to, I can fit a syringe in there with the Dexcom- it's a slightly loose fit. I got it from dollar tree.

AKA

2012-01-15T22:03:00.003-06:00

I've been astonished lately by how many insulins are sold by the same company under different names in different companies. Some examples:

Novo Nordisk sells insulin aspart as NovoLog in the United States and as NovoRapid in Canada, the UK, Israel, Australia, and I'm not sure where all else. It seems, going by its website to sell it simply as "analogue de insulina" in some South American countries but I'm not sure I'm reading that right.

Novo Nordisk gets even sillier the way it sells regular. It sells it as Novolin R here in the US and in some other countries. It sells is as Novolin ge Toronto in Canada (okay, I get it- Canadian pride). It sells it as Actrapid in Australia and some other companies. It sells it as Novolin S (just to confuse things further-the S is used to stand for Suspension and is used by some other insulin companies) in other countries. That's four names for one insulin!
I am not certain if Actrapid HM is the same as Actrapid or if the HM is producted. The standard Actrapid- like most Novo Nordisk insulins- is made by baker's yeast. But I'm not sure if the Actrapid HM is instead an animal insulin modified to be human insulin at the molecular level- some other insulin companies do this with pig and cow insulin, so maybe. Does anybody here know what HM means after the name of an insulin?

Porcine insulin in zinc suspension is sold by Merck-Plough-Shering as vetsulin in the United States (or it was, until a few months ago) and as caninsulin in Canada, the UK, Germany, Italy, Spain and Switzerland.

2012-01-11T09:08:00.002-06:00

Yesterday I tried to make photocopies of the zine, but my parents' photocopier kept jamming the pages (especially frustrating you're doing two sided copies). So I decided to go find a copy shop. My mother suggested a kinko's about a mile away that she wasn't sure was still in business. Guess what? It's not there. But the library was only another block away and it had a big BOOK SALE sign so I went in. Found an old (1962) book The Genetic Code by Isaac Asimov (Isaac Asimov is the answer to: Who has written books in all ten Dewey Decimal categories?) Picked it up and looked through it, was amused to see page 92, which says:

Suppose you had a peptide chain of thirty amino acids, as in insulin.

I initially interpreted that to mean that Isaac Asimov thought that insulin is a peptide chain of thirty amino acids, but writing this, I think maybe he means the factual statement that insulin contains a peptide chain of thirty amino acids (insulin contains two peptide chains, and the B chain in humans has thirty amino acids. The A chain has twenty one, so insulin has a total of fifty one amino acids).

Numbers Outa My Ass

2012-01-04T23:51:00.003-06:00

My blood sugar has been kind of rotten these last few days and my Dexcom is not helping. I changed sensors earlier this week and the new one is inaccurate so far. For instance, it said I was 188 rising before supper and I checked on the accu chek aviva and got a reading of 108. A re-check gave me a reading of 105. After supper, it showed me going up to about 240 and then drifting downwards. I took my Lantus. It was one of those shots- you know the ones, where you stick in the needle and meet resistance and push through and it doesn't hurt but then you meet another layer of resistance and push through that and then it hurts like hell? Yeah, it was that kind. I did the shot there anyways and when I pulled out the needle my butt bled a lot. So out of curiousity, I took my blood sugar with all that blood. I was wondering- would having insulin possibly in there with the blood or the fact that it was coming from, you know, my butt, matter to the accuracy? The meter read 303. Dexcom was saying 228. I rechecked on a finger and got a 297. Yeah, my butt beats my Dexcom.

2012-01-03T23:18:00.002-06:00

You know my retroactive ISF system? So I decided to put in x as the BCR and y as the BPR and z as the ISF. And write a bunch of equations, like I ate 96 grams carb and 7 grams protein and injected 11 units and blood sugar fell 121, so (96x+7y +121)11 =z. And write equations like this for a bunch of mornings (as anybody who knows linear algebra knows, to solve systems of equations like this you need three equations), and then solve. Problem? I did this for four first-meal-of-the-morning meals in the past week and solving the system gives me answers that are totally absurd. Like protein lowers my blood sugar. Or maybe that's not as absurd as it seems to me, since I'm looking at it over a four hour period- maybe the protein slows digestion and doesn't raise blood sugar 'til later? Or maybe the low amounts of protein I'm eating mean that protein doesn't raise my blood sugar at all.

I've got five subscribers for my zine now but none who are readers of this blog. Maybe I downplayed it too much. Seriously, I'm proud of it. Also willing to offer to just mail it to you without you sending me a self addressed envelope as long as I don't get inundated with requests. One of the requests I've received so far is from Canada.

New This Year- Zine

2012-01-01T23:04:00.002-06:00

I am making a zine made mostly of things already on this blog with some new material and illustrations. I expect the first issue to be completed this week. I will be happy to send you the first issue -free!- if you mail me a self addressed stamped envelope. To get my address, send an email to diffabled at hotmail dot com. The zine will be pages folded in half, not thirds, so you may want a slightly larger than normal envelope. Or I can fold your issue with an extra fold. It will be the weight of 5 sheets of paper plus a rubber band.
If you feel that you've really contributed to this blog (you know who you are) and should get a copy without having to send me a self addressed envelope, send me an email. I'll probably agree with you.

For subsequent editions, the price will be either a contribution in the form of your submission or five dollars for one issue or twelve dollars for three issues.

Submissions need to be on a 8.5"x5.5" paper- cut or fold in half a standard sheet- and they need to be legible, factual, and interesting. Also related to diabetes. Suggested topics include: little known factoids, interesting stories, puzzles, or comparisons of products. Answers to questions posed in your article, sources for facts, and permissions should be included on a separate piece of paper. Please include permission from your friends and family members if you write about them.

So I Know This Stuff, What Do I Do With It?

2011-12-26T23:42:00.002-06:00

Until I wrote the post about clinical trials, I hadn't realized that I'd become eligible for an islet cell transplant through a clinical trial. That is, I'd seen it before and realized that I would be eligible as soon as I passed the fifth anniversary of my diagnosis, but I hadn't though about it since then.
So I looked at the listing and I thought about it a little bit, and I thought, what would happen to this blog? What would happen to my membership in the diabetes community? What would it be like to be on immunosuppressants? Can I even learn to swallow pills? Would I turn out to be eligible if they did all the tests on me anyways (for all I know I might have a measurable provoked c-peptide level, or my history of pancreatitis would be a problem, or my liver enzymes would be elevated like they sometimes are, or in the opinion of the investigator my other health issues would be too much)? Would I be healthier with a transplant? Would a transplant help me more than it would help somebody else waiting for a pancreas? I'm really small- would I get a pancreas nobody else could use anyways?

Then I had that really awful hypo, followed by a second hypo that began during the day but which lead to a real change in consciousness/ hallucination anyways about two weeks later. So that made me think. Islet cell and pancreas transplants are supposed to be pretty good at preventing hypoglycemia.

In the end, I don't think I've reached the point where a transplant would clearly be the healthier option, and I'm not that tired of diabetes yet. Maybe sometime in the future. I don't know.

The other thing that my research makes me think about is my insulins. As my long time readers know, I used Lantus and Novolog from September 2006 until July 2011. Then I added Regular to the mix and within a couple of weeks decided that I liked Regular better than Novolog. Now I'm using Lantus and Regular. The research papers I've read strongly support the theory that Lantus is not really better than NPH at allowing people to get lower A1cs (in fact, NPH is better than Lantus in that respect). And NPH is cheaper, and I could mix it in a syringe with Regular. So why don't I switch?
There are, at this point, a lot of reasons why I haven't. For one thing, I kinda know what Lantus does in my body. I have only used NPH for one week back when I was wet behind the ears still and all I really remember from that was that I woke up hypo twice that week, and after switching to Lantus four months went by before I woke up hypo again. For another, it was drilled into me that on NPH, everything must must be scheduled- including the shots must be on scheduled, and meals must be consistant and on schedule. From my more recent readings, I think this is something that can be worked around, especially with a Dexcom and using regular that is not pre-mixed. But it might leave me more susceptible to lows when I'm sick, and we all know that I'm sick way too often. And taking two shots at a scheduled time 12 hours apart would be rough- although maybe a bedtime and a wake up time (the only two times I think I could schedule consistantly) shot wouldn't be too bad.
I also feel like this would be a difficult conversation to initiate with my current endocrinologist, even though we've both been feeling that Lantus isn't doing a great job with my basal needs- he's suggested Levemir. Lastly, the research suggests that Lantus does reduce hypoglycemia, particulalry night time hypoglycemia, and I already have a problem with nocturnal hypoglycemia- would NPH make it worse? I'm not sure.

But for now, I intend to keep things the way they are.

The Gutenberg Project

2011-12-25T16:14:00.002-06:00

For about six years now, the Chicago Public Library has had a catalog of books that can be downloaded by people who have chicago public library cards in good standing + the right sort of computer (or kindle or whatever). When they first launched that program, some months before I was diagnosed with diabetes (in that awful summer before my diagnosis I used to download audio books from the website and listen to them as I struggled to ignore my body and fall asleep), most titles has one or two "copies" available, which basically meant they had permission to let one or two patrons have the book checked out at the same time. A few titles were "always available" meaning that they were out of copyright or for some other reason the library had permission to let all patrons have access to the title at the same time.
Last week I was looking for the "always available" titles and found that instead of having such books in the catalog anymore, the library website instead has an interface for accessing the Gutenberg Project, which makes lots and lots of public domain books available for download. Unlike the books to check out, or the former "always available" books, I don't get to preview or see much of anything about the book before downloading. I get a title, and maybe an author and subject listing. Anyways, I looked to see if anything came up when I searched with the term "diabetes". Indeed, something did. I downloaded it.
The booklet is The Starvation Treatment of Diabetes: With a Series of Graduated Diets Used at the Massachussetts General Hospital. The edition that has been scanned up was published in 1916, and it is a modification of the Allen diet. The goal of the diet was to get the urine of people with "saccharine diabetes" to be sugar free. It includes ten patient stories (probably not chosen to be the best stories, 'cause two of the patients die) and tells what diet was necessary to get to sugar free. The diet used "starvation" days in which only water, coffee, and whisky were allowed (and the whiskey was pushed even on the kids), and, once the urine was sugar free, an almost unlimited amount of fat plus gradually increased amounts of carbohydrates and protein. It is interesting to me that alcohol was used as a source of calories thought not to cause ketogenesis or glycosuria, and it's also interesting to me that they are aware that protein but not fat is apt to cause short term glycosuria. The other observation that really interested me is the claim that fat causes ketonuria. The stories had me thinking a little bit about modern diets used for diabetes. I am so glad that I have insulin!

Sorry, Mr. Southerland

2011-12-22T10:07:00.003-06:00

Earlier this year, Phil Southerland of Team Type 1, an athlete who fundraises for diabetes research and to provide supplies to diabetics in third world countries, published a book Not Dead Yet: My Race Against Disease From Diagnosis to Dominance. I had heard enough about Southerland that when I saw the book in the popular library section at Harold Washington, I picked it up and took a look.
But the first few pages made me decide that I did not want to read the book, because in those first few pages, Southerland, who was diagnosed with type 1 diabetes at the age of seven months, makes the claim that at the time of his diagnosis, he was the youngest person ever diagnosed with type 1 diabetes. I was pretty sure that he was wrong.

Phil Southerland was diagnosed with diabetes around 1980. The first report written of a child below the age of seven months who had diabetes was written in 1852, by the child's father, who was a physician. The child had neonatal diabetes and died. An even earlier report, in 1789, was written about an older baby with diabetes, who also died. Before insulin, there were a number of reports of infants who died of diabetes as well as at least a few reports of infants with transient neonatal diabetes who survived without diabetes. I am not sure when the first case of a surviving infant with permanant type 1 diabetes happened, but the first case I have access to was in 1952 (some articles earlier than that I have only the titles of describe "infants under the age of one year" which might or might not have been under seven months). was diagnosed at the age of 17 days and the article was written when she was 8 months old, at which time she was getting four shots of insulin per day. The article is A Case of Congenital Diabetes.

Although it could be argued that neonatal diabetes is not really what Southerland means because maybe by type 1 he means autoimmune type 1 only. Autoimmune diabetes truly generally does take months to develop. And infants with permanant neonatal diabetes do have some different features- for instance they are rarely ketotic. However, I can easily locate articles from the 1950s about babies diagnosed between the ages of 1 and 2 months who were in ketoacidosis. One baby was given 250 units of insulin before his ketoacidosis cleared up (from reading the article it sounds like they lowered his blood sugar way too fast).

Antibody levels have never been routinely measured in children diagnosed at very early ages at the majority of hospitals, and in any case a baby at seven months can easily have a false positive antibody test (due to antibodies from the mother) so it's hard to know who the youngest antibody positive baby diagnosed with diabetes was in 1980. In any case, there's no real reason to think that an antibody negative baby with an inability to make insulin is any less of a type 1 diabetic than an antibody positive baby with the same inability.

I wanted to write this post because Southerland's statement really rankled. It struck me as extremely similar to the posturing done by Thomas Beatty, a transgender man who appeared on Opera and other public places to show off his pregnancy. So, okay, he wants to be very public and say that he's different because he's a pregnant transman- fine. But that wasn't enough- he had to claim to be the very first pregnant transman, a statement that was absolutely categorically false and had nothing true about it. He was not the first pregnant transman, he was not the first transman to take testosterone, go off testosterone, and have a baby, and he was not the first person to give birth wearing a hospital bracelet that said M. And I knew that because I had made my final choice to go ahead and take testosterone after I met a transman with a three year old son who had gone off testosterone in order to get pregnant himself, and I knew of a number of other such cases. And everytime I see somebody from a group that the public has lots of misperceptions about- such as type 1 diabetics, or transgender people- get up and claim to be the only one of something where it would be easy to find others, it really pisses me off.

P.S. Looking for a follow up to the case I linked to above, I found that in fact the girl's diabetes was not the same as the classical type 1- her diabetes went into remission when she was about one and a half years old and when she was 40 years old, was still in remission. However, the article with the follow up also includes the case of a baby born in 1957 diagnosed at age 28 days who had stayed alive and on insulin for thirty six years of follow up. The article is Long Term Course of Neonatal Diabetes

On Progress and Smells

2011-12-17T20:02:00.003-06:00

I was reading some studies today that really reinforce my sense that newer stuff in diabetes haven't really impacted our ability to lower blood sugar, only, perhaps, improved our quality of life in the effort to lower blood sugar.

Case in point: I just read a five year randomized but not blinded study of type 2 diabetics over a five year period. They were randomized to take either NPH twice a day or Lantus once a day. The people doing the study had (have) a hope that Lantus acts to reduce risk of retinopathy development. Towards the beginning of their paper, they claim that Lantus might prevent retinopathy by lowering overall blood sugar.
Their Lantus group started out with an average A1c of 8.41%, and the NPH group started with an A1c of 8.31%. Their Lantus group, five years later, had an average A1c of 7.80%, while the NPH group had improved a little bit MORE on average, to 7.55%. That is, they'd started out 0.1 better and ended up 0.25 better. The data analysis says with greater than 95% certainty that it wasn't a coincidence- that something about the NPH group or the NPH resulted in lowered blood sugar. Whether it was the NPH or something else, who knows.
The progression of retinopathy was similar between the two groups (it was slightly lower on the measure they chose in the Lantus group at five years, but not much, and it was worse on other retinopathy measures in the study), and so in their conclusion the authors claim that the A1cs back their case because the Lantus users didn't have more retinopathy despite having higher A1cs. I dunno... would you really expect a difference in retinopathy rates that would show up in their study based on a difference in A1c of .25%? I also thought it was noteworthy that the retinopathy rate that was seen in the study groups was higher than the researchers expected- in a five year period, a quarter of participants had retinopathy that got a lot worse.

The other studies making me think about this were about insulin degludec, which is currently in clinical trials and which also shows no real difference in A1c compared to Lantus or NPH or anything else, but which claims to lower rates of severe hypoglycemia. And a review of studies on CGMs, finding that most find no significant difference in A1c (although some do and I think that overall the studies show a very small average decrease in A1c) but less hypoglycemia.

So it seems to me that if we could trust research conclusions, the new stuff should reduce hypoglycemia and offer minimal or negative benefit to reducing hyperglycemia and long term complications.

*************************************************************************
On a slightly more jolly note, the other day I got to thinking about how my sweat smells different after a particularly bad hypoglycemic episode, or when I wake up sometimes, if I've been hypo in the night. I woke up Friday morning and thought I smelled funny, sniffed my armpit and knew that I smelled hypo, so I'd either been hypo earlier in the night or was currently hypo (as it happened, bg was 54 and Dex showed that I'd gone LOW four hours earlier but had been gradually rising). I know there are dogs (and cats) that alert people to hypoglycemia, but I wonder if we could train humans to sniff hypoglycemia? Even better, could we be trained to wake up upon smelling it?
Using the search term "Hypoglycemic odor," I found a number of interesting articles informing me that insulin decreases the rate of death of cells responsible for the sense of smell, and that giving rats insulin changes their sense of smell in unpredictable ways (fun fact, amiright?), but I did not find anything about how hypoglycemic people smell. Maybe I'll look more later.
I have to say, my sense of smell has only changed in a way big enough for me to notice once in my life, and that was about two months after I went on testosterone, when suddenly I started smelling smells I'd never smelled before. That was seventeen months after I went on insulin, so I don't think the two are related.

A Stupid CDC and ICD code

2011-12-11T17:31:00.003-06:00

I like to look at data. Specifically, in the last few months, I've spent many hours reading the CDC's data pertaining to mortality. In the infant mortality tables, there's this one diagnosis that annoys me everytime. Here it is:
Syndrome of an infant of a diabetic mother and neonatal diabetes

It makes no sense because neonatal diabetes is not caused by having a diabetic mother, or at least it isn't usually, and in the rare cases that it is, it's just about never fatal. So how in the United States did 11 infants die of it in 2008? And more in each of the preceding ten years? There are only about 11 infants born with neonatal diabetes in the United States each year, and most of them live! (2-3 babies per million are born with neonatal diabetes, and about 3 million babies are born in the US each year).

A google search gives a partial answer. Apparently this code is meant to combine two things: syndrome of "infant of a diabetic mother," and neonatal diabetes. So in all likelihood, out of the hundred plus babies' deaths recorded on this code, all but one or two were due to a "syndrome of infant of a diabetic mother" (probably plain old hypoglycemia) and maybe one or two were due to neonatal diabetes. Probably none were due to both. I still think it's a stupid code and a stupid grouping.

A Week of (trying for) Running High

2011-12-11T13:16:00.002-06:00

After my scary low a week ago, I decided to try to aim for high blood sugar, around 180, instead of my usual target range of 65-155 (target number 110).

An evaluation of my numbers over the past week shows that I did not really run significantly higher during the daytime, although I dramatically cut lows. I went from being low about 7% of the time to about 2%, and I did not go below 55 the entire week. I ran significantly higher overnights, particularly because of two nights in which I was very high (on one of those nights I threw up- not sure if it was because of the high or the high was because of the sick). My total blood sugar average was about 20 mg/dl higher than the previous week and about 30 mg/dl higher than the last three months' average. My standard deviation was lower and time spent above 240 was comparable; I spent a lot more time than usual in the 160-240 range.

I thought at first that I would be able to say how running high made me feel but then I realized that I'm sick and that that probably has as much to do with how I'm feeling. But I was really a lot more hungry this week. Maybe that had to do with running high, maybe not. Maybe it has to do with being sick. I also really noticed on the nights that I was running high, I felt pretty awful. I don't like running that high. I snacked throughout the days trying to get my blood sugar to go up, which it generally wouldn't do until evening. Not sure what that's about. And I also noticed, since I was correcting sparingly, that my insulin is dropping me by more than I was assuming- I was assuming an ISF of roughly 30-35 in the AM, but my actual ISF was more in the 40-45 range, and in the evenings I was assuming an ISF of 60 but seeing an ISF of more like 80-90. So my attempts to underdose for carbs weren't working because I was taking too much insulin.
That means it's time for me to go back to couting carbs carefully and collecting data- yuck. I'm not sure if the changes I saw were due to illness or will be persisting for awhile.

I think I'm going to keep trying to pre-empt lows by treating at blood sugars in the 90s until it's clear that I've recovered from whatever is making me sick. And I may put in a call to my endo about my blood sugars sometime soon.

2011-12-05T13:20:00.002-06:00

The rookie sensor mistake was removing the needle without pulling back the collar.

After the alarm "sensor fail" I peeled off the sensor pod and the sensor probe didn't come out of my body. I wasn't sure if it hadn't gone in in the first place or if it had broken off and was entirely inside of my body, so I called Dexcom tech support, and she said that the sensor did not go in- that it was either inside the needle still or was on the floor somewhere.
She sent me a replacement sensor even though the error was entirely mine.

Rookie Sensor Mistake

2011-12-04T10:28:00.002-06:00

Last night, I changed sensors, since the old one still hadn't recovered from Sensor Error 1. And as if the day hadn't been rotten enough, I made a rookie mistake. See if you can find it.

I took off the old sensor, had a drink of water, took a bath, dried off, had another drink of water. Got out a new sensor, got my mother to help, had her pull off the adhesive and stick it on my butt. Pulled the clear plastic stopper thing off the side, pressed down to insert needle and sensor, made sure it clicked down twice. Squeezed the sides of the sensor to release the inserter, it stuck a bit more than usual and pulled free. I took the transmitter out of my old sensor and put it in the new one. I went to the menu on the Dexcom, scrolled down to start new sensor, and hit ok twice. Twenty minutes later, I got the message: Failed Sensor.

What went wrong?

My Parents May Have Saved My Life Today

2011-12-03T20:16:00.003-06:00

This morning I woke up exhausted. My blood sugar was 61. Entering the reader into my Dexcom resulted in a reading of Sensor Error 1. I injected and ate breakfast (two bowls of cereal). I knew I hadn't really eaten enough for my entire injection of breakfast but that the cereal would cover the first two or three hours of my shot. Maybe more- I've been insulin resistant lately. And I was exhausted. I lay down to take a nap. I mentioned to my folks that I was going to take a nap and therefore was not joining them on their way to the synagogue. My mother, jokingly, asked if I wanted a wake up call, and I said, if I was still asleep when they got back, they should try and wake me.

I had nightmares. I wasn't a person and everything was trying to kill me and I had only a little chance of living and everything was changing and I was going to die and I was very very very confused. At some point I became aware that I was, after all, in a human body, and that I was in bed. And my door was wide open and there was an empty juice box by my head and my Dexcom and blood sugar monitor were in bed with me when I knew that I'd left them on the table ('cause what good is a Dexcom reading Sensor Error 1?). It was 3 PM. I felt like shit and I was shivering and disoriented. I reviewed the numbers on my meter. There were three readings on my meter between 2:30 and 2:40 PM- a 39, a 103, and a 35. And God (or a voice, at any rate) spoke to me and said that they'd just saved my life. I said the blessing that struck me as appropriate at the moment (Blessed Are You, My Lord, King of the World, That Everything Became With Your Word.)
I checked my blood sugar. It was 46.
I grabbed my insulin and headed upstairs (I live in the same apartment building my parents do, three floors down from them). I asked my parents what had happened. Apparently, my mother came home from the synagogue at 2 PM. She knocked on my door and I didn't answer. So she figured I'd gone out, but she opened my door anyways and I was in bed. When she tried to wake me, I woke up enough to make a face and start talking nonsense. She went and got food and came back. When she came back, I was shaking all over and when she offered me food, I screamed and ran into her and pushed her out the door (no, I do not remember this). Then I went into my brother's room (which is next to mine) and slammed the door and went to his bed.
I was back in my bed. I didn't recognize my parents and asked them who they were. They checked my blood sugar but weren't really sure how to so it took them awhile. The 103 was my mother checking on herself. I'm not sure why they checked me twice. They got me a juice box and somehow got me to drink it. I sort of remember the juice box. They left me alone planning to come back in twenty minutes, but I came to and went upstairs myself in just under twenty minutes.

So. I used to think that I would never be one of those guys who gets violent while hypo. I've said before that hypos only make it harder to control yourself, not impossible. I take it back.

The number one predictive factor for a person to have a severe hypoglycemic episode is severe hypoglycemia in the previous week. And I actually did have an episode less than a week ago in which I woke up very confused and hallucinating, for the first time in about three years, and the third time ever, and my blood sugar wasn't even really low that time (it was in the 60s over the previous hour according to the Dexcom, and 72 according to my meter). I've been hypo to some extent pretty much every day this month, and most of the hypos did not happen from anything close to as stupid as what I did this morning.

I'm not sure what I should do going forward. My father wants to accrue more practice testing my blood sugar. I'm going to try to not take naps, and I'm going to set an alarm for overnight checks for the next week. I'm also going to run higher and try to avoid going below 90 or so for the next week, and not worry about highs below about 220. I'm putting in a new sensor tonight. I'm thinking about calling the endo.

2011-12-01T23:02:00.003-06:00

I made it the whole month of November with a fact a day, I think. I'm going to make a list sometime. So I think it's time for a little bit of an update on me.

My blood sugars in July, August, September, October were the most stable and easy to understand blood sugars I've ever seen in myself. That resulted in an A1c in October of 6.1% that I had actually expected to be lower, even though 6.1% is my personal record low A1c. Unfortunately, my bg became very unstable soon after that A1c draw and is now being really difficult. My average blood sugar hasn't gone up all that much (though it has significantly gone up) but that is at the cost of a lot more hypoglycemia. I am not seeing a whole lot of flat lines.
This may be because I haven't been following my own advice; I'm really sleep deprived. I've been staying up late writing these posts (the ones that took the longest were the ones where I started out with an opinion, but then found that the research disagreed with me or was inconclusive, so had to pick a new topic- I may write a post about things I was wrong about) and then getting up early to go to morning prayers. But anyways, I'm not doing too poorly.

I saw my general practitioner today. My vitals were all pretty great- my weight was within a pound of last time, my temperature, pulse, and bp were all where I want them to be. My endo had faxed over my bloodwork from my last two visits, per my request. The only interesting detail he hadn't shared was my serum creatinine, which was low on both the June and October tests (not a real surprise, since my creatinine is usually low, but possibly indicative of hyperfiltration).
The GP and I had a long talk (I am lucky in the time my GP and endo spend with me). She suggested that I see a different endocrinologist- one who is well versed in all of the endocrine diseases/issues that I have. I'm not sure such a paragon exists and am also concerned that such a person wouldn't have the style my endo does. I want a doctor who has time for me, and who understands that I want to be making most/all of my treatment decisions (including decisions not to treat)- I want the doctor to be educating me about and offering me options, and I want the doctor to be a good diagnostician. My current endo is not willing to manage my testosterone, which is why I see the GP, and also doesn't know as much as I want him to about vitamin D. Anyways. For now I'm sticking with the doctors I've got, and maybe throwing a rheumatologist into the mix.
I had blood drawn- only one vial, because apparently all of the tests I wanted and/or the doc wanted require small amounts of blood. The nurse got blood on the first draw despite not having a butterfly, which is about the first time that has ever happened. That nurse always gets my veins though. I have a good relationship with him and I'm always thrilled to see him when he's there because he is so good at getting my blood and also he likes my jokes.

Posts soon to come include a list of things that I didn't learn in November, a summary of the November facts (that maybe become one of my "pages" on top), worst excuses for high blood sugar readings, and updates on my diabetic life.

The Truth About Fat and Proteins

2011-11-30T23:17:00.005-06:00

Blood sugar goes up when the sugar going into the bloodstream is greater than the amount of sugar being taken out of the bloodstream.

The reasons that the body has trouble taking sugar out of the bloodstream are, essentially, the reasons that people have diabetes.

Some treatments of diabetes, however, focus on the rate at which sugar is added to the blood stream. This is done in two ways: with medications that change the speed at which the body releases sugar after meals (these medications include metformin and symlin, among others), and with dietary means. Dietary means typically focus on changing what types of foods are eaten to consume those foods that are converted to sugars the slowest.

Generally, there is a ranking in terms of how fast it takes the body to go from eating a food to adding sugar to the blood stream. Most people believe that some foods do not add sugar to the blood stream. This is a lot less true than is widely supposed.

Here are five general sources of energy for the body:
Alcohol (which this post will not deal with), fats, proteins/amino acids, complex carbohydrates, and simple carbohydrates.

I don't actually know how the body gets energy from alcohol so I'm gonna leave it alone for now. Complex carbohydrates and some simple carbohdrates require some breakdown before turning into glucose (some simple carbohydrates are glucose to begin with) but I think that's pretty straight forward.

So this post is about how the body turns proteins and fats into glucose. The process of turning something that's not a carb into sugar is called gluconeogenesis. Gluconeogenesis takes place in the liver and occurs more when the body is under starvation conditions or is eating a diet low in carbohydrates. Gluconeogenesis is driven by glucagon. Glucagon production in type 1 diabetics is often abnormally high (because in the normal pancreas, insulin kinda tells the alpha cells to slow production of glucagon), but may also be normal or low (such as in diabetes where the entire pancreas or islet cells have been damaged or are missing).

When the body breaks down fat for energy, it separates the fat into two parts to start with. One part is a fatty acid, (whether this can be turned into glucose in humans is debatable), and the other part is glycerol.
Glycerol is considered a complex carbohdyrate if you eat glycerol as is. It takes some work for your body to convert it into glucose, but it happens.

The things your nutrition label calls proteins may be amino acids actually together in a chain (in which case they are proteins) or they may be plain amino acids. If you eat them as proteins, your body nonetheless breaks them down into their component amino acids. Your body can then use the amino acids to build the proteins it needs. If there are extra amino acids left over, the body may store them as fat or turn them into glucose. Most (I have seen this number at 12, 13, and 14) of the amino acids are typically turned into glucose; another four or five can be turned into glucose if needed. Two amino acids never turn into glucose in human beings (those two are leucine and lysine and they are called the ketogenic amino acids because they are ketogenic).

So, the body gets from food to glucose at different speeds (and at different percentages of the food) depending on what is consumed. Typically, when people take insulin in a basal-bolus pattern, they take bolus insulin based only off of the carbohydrates they eat, because the carbohydrates are absorbed most quickly and because it's easier to just count carbs. Some people also count proteins and inject for a smaller portion of the protein (I do not do this because I have trouble figuring out just how much to inject for the proteins and because counting just carbohydrates seems to work reasonably well for me).
Proteins and fats and even some of the carbohydrates are converted to sugar slower and are often covered by basal insulin. In people whose bodies make some insulin, often that insulin can prevent rises in blood sugar when the sugar is going into the blood stream at slower rates.

In the DCCT, the large scale trial often used as evidence that more intense blood sguar control prevents, delays, and reverses complications in type 1 diabetics, higher fat diets were not associated with lower insulin needs or lower A1cs. Other studies have had had other results, but it is safe to say that if you take, for instance, 70% of your insulin as bolus and 30% as basal while on a high carbohydrate diet, if you do not make insulin, going to a low carb diet will not drop your insulin needs to your current basal needs.
Here is the DCCT authors' analysis.

And just for fun, the glucose song:

While You Sleep

2011-11-29T20:11:00.002-06:00

There's been more research on type 2 diabetes and sleep than on type 1 diabetes and sleep because sleep deprivation causes insulin resistance (and so it's hoped that correcting sleep deprivation will prevent type 2 diabetes).
The research on type 1 diabetics and sleep is generally not about the sleep per se; it's about what happens to us while we're asleep. Why, what happens to us to us when we're asleep? Weellll....

All people have less ability to respond to hypoglycemia while asleep- the body does not like to handle it. Furthermore, people who've had type 1 diabetes long enough will not wake up from hypoglycemia, and we're not any easier to wake up while we're hypo (tested by people who woke up diabetics while they were at blood sugars of 99 and blood sugars of 50 to see how easy it was).

Despite this, at least a third of type 1 diabetics frequently are hypoglycemic while asleep without ever knowing about it. Studies with CGMs suggest that 7% people with type 1 diabetes are hypoglycemic on any given night.

Blood pressure is supposed to go down during sleep. In type 1 diabetics, early autonomic neuropathy causes blood pressure to not change as much as it's supposed to and not having blood pressure fall during sleep is a strong predictor of who will develop kidney problems (stronger predictors are age at diagnosis and A1c). The American Heart Association is recommending Ambulatory Blood Pressure Monitoring for children and adolescents with type 1 diabetes to screen for this issue.

The genetic basis for narcolepsy indicates that a gene protective against type 1 diabetes is high risk for narcolepsy; this might mean that narcoleptics (who are at an astronomical risk for type 2 diabetes) are less likely to have type 1 diabetes; flipped it means that type 1 diabetics are at lower risk of narcolepsy.

Adults with New Beta Cells

2011-11-28T22:51:00.002-06:00

Fact: Many human adults have young beta cells.

When the body needs to be able to make more insulin than it is making, it will sometimes produce new beta cells. Guess what it makes the new beta cells out of?! Alpha cells, usually (alpha cells being neighbors to beta cells, and being responsible for making glucagon).
The human pancreas is generally done growing by the time it's about two years old (two years after birth, that is). Beta and alpha cells may continue to be generated anew until about age thirty, and in unusual circumstances, even later.

The beta cells do not turn into alpha cells in the event that the alpha cells are mostly destroyed source, at least not in mice.

There is currently a debate in medical/scientific/research communities about how much beta cell regeneration in type 1 diabetics matters. The question is: if we can stop the body from killing off new beta cells, can the body make enough new beta cells for it to make a significant difference for the diabetes (or perhaps ex-diabetic)? It seems to me that the answer is a pretty definite no for a lot of type 1 diabetics- the ones in which there is no real evidence of any ongoing beta cell production. It might be yes for others.

Santa Gave Him Diabetes

2011-11-27T20:03:00.003-06:00

If you've spent much time looking for diabetes song and/or diabetes humor, you've probably run accross this gem:

Andy Stuckey and Jon Murray are a comedic duo; they write and perform funny songs (for adolescents/ adults), such as the one above. They also write ads. In a totally different development, they developed the fuxedo (fake tuxedo- something that looks like more pieces of clothes than it is). They wrote and performed this song about diabetes because Andy Stuckey has it.

Andy Stuckey grew up around diabetes; his younger brother was diagnosed at the age of five, when Andy was about eleven. A few years later, he participated in a screening test for family members and he and his family were told that he was at a higher risk of developing diabetes down the road. More than ten years went by before, at the age of 28, he saw in himself symptoms of diabetes. He was thirsty, he was tired. And so on Christmas, he checked his blood sugar on his younger brother's meter. His blood sugar was 240 mg/dl; Santa had brought him diabetes.

Andy Stuckey has a diabetes blog that was last updated in 2007. His band with Murray (stuckeyandmurray.com) is not about him (but it is a fun website). Googling him didn't get me much further, although it should have- he is the head writer of the tv show Guy Code (on MTV2 on Tuesdays at 11- some parts viewable online). Since I didn't want to write something about him that would be inaccurate because of being out of date, I sent him an email asking if I could write about him- and he wrote back to say that I could call and talk to him. So I did. I didn't do a great job of typing while talking, but here're the most interesting questions and answers:

Jonah Diabetic: What are you most proud of? What do you want to be remembered for?

Andy Stuckey: My kids, definitely. I have two kids, right now they're three years old, and two months- really new.
The show I'm working on right now had the highest premier in MTV2's history.
[note from J: I don't understand ratings- here's an article that's impressed though: http://www.thefutoncritic.com/ratings/2011/11/17/mtv2s-guy-code-delivers-most-watched-p12-34-series-premiere-in-networks-15-year-history-787005/20111117mtv01/]

JD: With your songs, shows, the stuff you write- what's your goal? What do you hope people will get from it?

AS: I want to make people laugh.

JD: There was some talk online about you putting together a diabeetles group- is anything happening in that direction?

AS: We have a whole lot of ideas, but we still need another person- it's not going to happen really soon. It'll probably be just one album, spoofs of Beetles songs with a diabetic twist. When we do it, we'll probably perform for JDRF, try to reach the maximum number of diabetics.

JD: Well, I think the ADA is bigger if you want to include type 2s.

AS: Yeah, type 2s are family too.

JD: In the years that you've been around diabetes, what do you think has changed the most?

AS: How easy it is to check your blood sugar and give insulin. With my brother, we used to have to measure the sugar in his pee, and that only told us what his blood sugar was about four hours earlier.

JD: How are you managing your diabetes? What do you think you'll do differently in the future?

AS: I take Lantus and Novolog and I use the glucose buddy app. [Glucose Buddy] I was just talking to my doc about a continuous monitor- might make things easier. I get in a routine with my foods, it gets kinda monotonous. How many times do you want to eat eggs for breakfast, y'know?

JD: From reading your blog, seeing how your A1cs were [the two A1c measurements there were 5.5% and 4.9%] , I was like, "Whoa, this guy must be honeymooning!" Were you?

AS: Could be. But my blood sugars aren't really higher- my A1cs are still five eight, five nine.

JD: How'd your family react when you were diagnosed?

AS: They were sad. But, y'know, by the time they're thirty (Stuckey was diagnosed at age 28), everybody's got something- a bad back, bum knee, diabetes. For me it was diabetes.

JD: Thanks!

Zinc and Insulin

2011-11-26T20:40:00.003-06:00

In the last thirty years, the antibodies associated in medical minds with type 1 diabetes have changed considerably. I wrote about, a while back, a person who'd written a book about health care, whose daughter had been diagnosed with diabetes and tested for antibodies at the same hospital that I was, Children's Memorial Hospital in Chicago, some twenty years before me. At the time of his daughter's diagnosis, just like at the time of my diagnosis, it was standard practice to test for antibodies- but the antibodies being tested for were different. Different antibodies have continually been added and subtracted from the diabetes antibody tests because the newer antibody tests are found to have better specificity and sensititivity.
His daughter was tested for bovine milk antibodies, which are certainly found in the type 1 diabetes population at higher levels than in the general population, but not in a very dramatic way; it nonetheless pointed to a possible cause of diabetes, to know that those antibodies are more common. I was tested for insulin antibodies (why those would cause diabetes is pretty straightforward), Glutamic Acid Decarboxylase antibodies (GAD coats the islet cells), and Islet Cell Antibody 512 (another easy name). I was positive for the latter two.

I was diagnosed only five years ago, but there's already been a change to the classic antibody panel done for type 1 diabetes. The new antibody tested for has a descriptive name: it is ZnT8, which stands for Zinc (Zn) Transporter (T) 8 (the 8th type of zinc transporter, the one responsible for insulin- see wiki blurb. The name does indeed point to something that is found in abundance in the pancreas and in the islet cells.

Zinc has been known to be a part of insulin for more than eighty years. I just read a very informative article on the state of knowledge of the relation of zinc and diabetes written in 1936. The article is an evaluation of certain insulin addititives, particularly zinc and protamine, and analyzes the amount of zinc in various insulins for sale at that time.

Anyways, as it happens, zinc is important to everybody, and its functions matter to the development of most cases of diabetes. Zinc deficiencies, which affect between a third and a fourth of all people worldwide (a smaller portion in the food secure part of the world) causes insulin resistance, probably because the body needs zinc to make insulin. Mutations of the zinc transporter gene can result in various forms of diabetes. Autoimmune attacks on the zinc transporters is a better predicter of the development of type 1 diabetes than any other antibody currently known.

All of us who inject insulin are also injected zinc and one thing I found myself wondering when I was fairly newly diagnosed was, do we inject a significant amount of zinc? Can we overdose on the zinc in our insulin? Studies seem to suggest that diabetics, including type 1s, generally don't have enough zinc, so the answer clinically is probably not. But here's another way to look at it.

The recommended daily allowance of zinc for adult men and women are 11 mg and 8 mg per day respectively. The amount required for toxicity is between 20 mg and 40 mg per day.

Let's pretend you inject 100 units of insulin per day. How much zinc are you injecting?
100 units of insulin with nothing added contains roughly 0.015 mg zinc- maybe a little more, but definitely nowhere near your daily requirement of zinc.
But most of the insulins on the market have a little zinc added. If you took 100 units of Lantus, you'd be getting 0.045 mg zinc from the Lantus. With Levemir, 100 units would get you 0.08 mg of zinc, and 100 units of Novolog of Novolog would get you roughly 0.03 mg of zinc. With NPH you'd be getting about 0.035 mg zinc. Apidra and Regular have no zinc added at all, so all you'd be getting is the endogenous 0.015 mg of zinc.
So, even if all of your insulin was Levemir, and you were a woman taking 100 units of Levemir per day, you'd be getting just under 1% of your daily zinc requirement from your insulin.

You'd have to have some really heavy duty insulin resistance to be getting a significant percentage of the RDA of zinc through insulin injections- unless! injected zinc does more than oral zinc. I know of no evidence of this though.

How Common Is Diabetes?

2011-11-25T15:58:00.002-06:00

That depends on how you define it!
According to current definitions, half of American adults over 65 are diabetic or prediabetic.

More interestingly, according to extrapolations from the SEARCH study, roughly 1 in 400 people under the age of 20 in the United Stateshas diabetes (including all types of diabetes), for an estimated 215,000 youths. The estimate they were putting out last year, based on 2007 data of how old people in the US are plus data on diabetes prevalence from about ten years ago, was 186,300 youths, which was a little more than 1 in 500.
Frankly, the data is not exact enough to get a good guess. But it is likely that between 1 in 300 and 1 in 500 Americans is or was diagnosed with type 1 diabetes by the age of 20.

In other countries, the risk is fairly different. Prevalence in Finland is greater than 1 in 200, while prevalence in some parts of Asia is less than 1 in 1000.

Interesting Resources

2011-11-24T19:42:00.002-06:00

Even if you don't know much about diabetes, chances are you've heard of two diabetes organizations: The American Diabetes Association (ADA) and JDRF. And you probably know how to google. This is a rundown of some resources I think you ought to know about.

I don't think the JDRF is much of a resource, but it does have a penpal service for kids and if you want to fundraise for them, it'll let you. In some areas it provides kits and connections for the newly diagnosed. Website: jdrf.org

The ADA, American Diabetes Association, has the website diabetes.org, which tells you what a big name they are. They have multiple interesting publications, most prominently the Diabetes Forcast (intended for diabetics and our families). They publish guidelines on diabetes care (such as how often your A1c should be checked) and diagnosis that are followed by most of the world, and that influence your insurance company. They also run diabetes camps, fundraising shindigs, expos, and support groups.

Children With Diabetes, childrenwithdiabetes.org, was founded by a parent of a kid with diabetes, dx at age 2 and now older than I am (well, I guess she was older than me all along). It was bought and is owned by Johnson and Johnson (maker of bandaids, among other things). CWD has newsletter, email lists, chats, a forum, surveys, and an extensive website. Unfortunately, a lot of what's on there, particularly products, are seriously out of date. The website is type 1 focused and is intended especially for parents but has been more open in recent years to adults with type 1 diabetes. CWD has various educational seminars and conferences; the biggest one is the Friends For Life conference that happens annually in Florida.

tudiabetes.org is currently the largest social networking site for diabetics and SOFFAs (significant others friends family and allies). It offers some very minor other services. You can find me on there as JonahD.

If you are uninsured, it is worth knowing about programs that will provide you with free insulin, such as Lilly Cares(which will provide humalog, nph, regular and glucagon for free if you are uninsured and not making too much money) and Novo Nordisk's Patient Assistance Program, which will cover Novolog, NPH, Regular, Levemir, Glucagen, and metformin. Sanofi Aventis also has a Patient Assistance Program that covers Apidra and Lantus. These programs all require you to have a doctor who prescribes the medications and is willing to have your medications shipped to xem, and then you pick them up for free. They have different levels of poverty requirements.

The National Institute of Diabetes and Digestive and Kidney disease has a diabetes clearinghouse website. It is most interesting for its statistics. Whoever writes the website has a dramatic writing style that grates on me.

If you are at all interested in the idea of being in a clinical trial, or if you simply want to know what's going on in your area, you should know about clinicialtrials.gov. All clinical trials in the US are required to post here,and some studies being conducted elsewhere are also posted here. However, you shouldn't have your hopes too high when looking for a study. At the moment, there are 279 trials related to type 1 diabetes and many more related to other diabetes posted on the site that are currently looking for volunteers or will be looking soon. The search brings up studies on complications, treatments, prevention of development of diabetes, prevention of development of complications, extension of the honeymoon, and more.
Although there are other websites with clinical trials, and others with non-clinical trials, this is the most complete site for trials that have a real chance of accomplishing anything.
I am eligible for one study in my area- I am eligible for an islet cell transplant. A lot of transplant related stuff comes up in my search- clinicaltrials.gov is how I know that they're doing bone marrow transplants on recently diagnosed (less than five months) diabetics at my hospital.
You can also find study results of many trials- if you want to see what Exubera did to A1c or body weight or anything like that, you can find it on this website.

Pubmed is my favorite place to just browse journal articles about diabetes (and everything else). Pubmed provides a listing of most medical articles published. If you are looking for very specific information, it may be hard to find, and some things will only let you see a title. But that doesn't mean it's not worth looking through. If you spend much time reading there, you'll learn a lot. I suggest sometime looking at the very earliest things published on a topic- that often provides more basic information.

Speaking of places you'll learn a lot, I've always been a library fan (I have been a library volunteer for more than half of my life). Books about diabetes are a real mixed bag, unfortunately. The library of congress areas for diabetes are RC660 to 662 (diabetes) and RJ420.D5 (pediatric diabetes). You will also find books about diabetes in other parts of the library.

Hopefully, your doctor and CDE are good resources too. And you can make an appointment to talk to a diabetes educator or a nutritionist who might have something to teach you if you want.

Online websites may allow you to buy diabetes supplies cheaper than elsewhere; at least they let you compare prices. Your insurance company's website should be familiar to you and probably lets you look at the formulary and compare prices of drugs (if slowly and arduously). You may need to create an account to do this.

There are a wide variety of interesting diabetes blogs out there. I am not going to make a list (at least not today). Fortunately, lots of bloggers make their own lists of diabetes blogs they like. Here is Kerri's list.

Happy hunting.

What Can I Donate?

2011-11-23T21:43:00.003-06:00

Note: This post is specific to US policy.

Type 1 Diabetics who are alive are allowed to donate blood if they've never received bovine insulin from the UK and meet other blood donor requirements (I miss the requirements because I'm too small). Diabetics are more likely than the general population to be excluded for answering that that they do not feel healthy, or taking aspirin, or having kidney disease, etc.

Living type 1 diabetics are generally barred from donating anything else. I believe type 2s are as well but the policies I found were somewhat vague as to a person with
well controlled type 2 diabetes not on insulin might be eligible.

People with all autoimmune diseases are barred from donating bone marrow (at least on paper- my mother was accepted for the bone marrow registry and she has rheumatoid arthritis) and people who take medications to control diabetes are also barred.

Dead diabetics, on the other hand, can be organ donors. There has been some discussion in the medical literature about how healthy a dead person has to have been to make a good enough organ donor, particularly in regards to organs for which their is a shortage, such as kidneys. In 1995, the net of potential donors was expanded to accept cadaver donors who had had diabetes or hypertension or who had been dead a little longer.
People waiting for organs in the United States are allowed to indicate whether or not they are willing to accept an organ from an "Expanded Criteria Donor"; such donors would include dead diabetics. The pancreas would likely not be viable, but kidneys (even if you have microalbuminuria), liver, heart, and lungs,
not to mention corneas- these could extend somebodies life.

If we count things you are allowed do donate dead or alive, then just about the only things diabetes stops you from donating are your pancreas (which you might be able to donate to a research study) and your bone marrow.

That means that being diabetic is no excuse not to register as an organ donor.

X-Linked

2011-11-22T20:35:00.003-06:00

Last November I wrote that type 1 diabetes, unlike the vast majority of autoimmune diseases, is more common in men than in women. As it turns out, that is only true in populations where type 1 diabetes is more prevalent generally.
A few months ago I was browsing through OMIM (the Online Mendelian Inheritence in Man project). There are lots and lots of genes associated with type 1 diabetes. Two of those genes are located on the x chromosome. In combination with other genes- and ONLY in combination with those genes- one of the x chromosome genes increases susceptibility to type 1 diabetes in people who carry the DR3 marker (commonly found in type 1 diabetics of European descent).

The other one is the FOX regulator gene that I have heard lots about but never in terms that I really understand; it is linked to a whole bunch of complex immune disorders.

So, in populations where the DR3 diabetes genes are common, type 1 diabetes is more common in guys because it is a bit x-linked, and in other populations it is more common in women, because it is an autoimmune disorder.

In case you need a reminder of how X-linked disorders work: everybody has at least one X chromosome (fetuses without x chromosomes are miscarried), and people can have various numbers of x chromosomes. However, most men have one x chromosome and most women have two x chromosomes. Most x-linked disorders are recessive; if a person has one normal allele and one allele for a disorder, the person does not have the disorder. Therefore, having multiple x chromosomes protects you against having the disorder.
For instance, red-green color blindness, which is easily the most common x-linked disorder, occurs in roughly (ROUGHLY) 1 in 8 men, and 1 in 64 women.
That's because it works like this (pretending all sons are XY and all daughters XX):

If the father and mother have all normal color sight genes, none of the kids have this type of colorblindness, no matter the kids' sex.
If the father is colorblind and the mother has two normal color sight genes, none of the kids has this type of colorblindness, no matter the kids' sex.
If the father is colorblind and the mother is a carrier, half the kids are colorblind, no matter the kids' sex.
If the father is colorblind and the mother is colorblind, all the kids are colorblind, no matter the kids' sex.
If the father is not colorblind, and the mother is not colorblind but is a carrier (and roughly 1 in 6 women is), then half of the sons and none of the daughters are colorblind.
If the father is not color blind, and the mother is, all of the sons are color blind and none of the daughters are.

Ten Best Reasons (Excuses) For an Unexpectedly High Blood Sugar Reading:

2011-11-21T19:31:00.000-06:00

10. The lancing device had sugar on it.

9. Somogyi effect.

8. You injected slow acting insulin instead of fast acting.

7. You're holding the meter upside down (there is a down side to a mini meter, get it?).

6. You injected air instead of insulin.

5. Somebody changed the key code on your meter without telling you!

4. The restaurant gave you soda with high fructose corn syrup even though you ordered diet soda.

3. You spilled some of the soda on your hands.

2. Your maltose levels are high.

1. You have diabetes.

Kidney Donations and Diabetes

2011-11-20T22:56:00.002-06:00

I just came from a memorial service for a mentor of mine. I met her six years ago, when I was seventeen and she was about twice my age at that time. She was facilitating an advocacy/support/education group for transgender youth. It met every Wednesday and once I started going, I was there every week (except for movie nights).

Ten months later, I was diagnosed with diabetes. As I've probably said before, I had a lot of different emotions around my diagnosis. But on the night that I went back, I was giddy with fear, and the nervous excitement of being out on my own (no nurse present) with diabetes. And I said that I had just been diagnosed with diabetes (I didn't say type 1 because the type wasn't confirmed until three weeks after my diagnosis). I said I was going to be carrying insulin and syringes and doing things that might make it look like I was breaking the rules, though I wasn't.

Lois (that was her name) did something with that that I didn't see coming. She used me as a (good) example about how we should take care of our selves and of our health, and then she talked about her health. I had known her for ten months; I had spent at least 60 hours with her by that point. I had not known that her kidneys had failed and that she had spent seven years on hemodialysis. She said that, after seven years, when her doctor told her that he had a kidney for her, at first she thought he was joking. Lois told us what it took to take care of herself on dialysis and to keep going. She showed us the big bumps on her arms that they had used. She told us about calling dialysis centers when she traveled. She told us about what it meant to be responsible.

About two months later, Lois said, "Guess what Jonah?" and she pulled out a blood sugar meter. She had been diagnosed with diabetes, too. Her diabetes was probably secondary to her transplant medications- transplant medications are known to cause insulin resistance.
There's even a name for diabetes caused by transplants: NODAT. The acronym stands for New Onset Diabetes After Transplant. Estimates for prevalence of NODAT among transplant recipients varies by a lot. I think 15% is a fairly good estimate.
Lois's diabetes was treatable by oral medications. NODAT inorporates elements of both type 1 and type 2 diabetes in that it features insulin resitance but often damage to the pancreas as well. But most of the time, it is treatable as if it were any other type 2 diabetes.
Unfortunately, NODAT is something that also develops in pancreas recipients. Sometimes you can trade type 1 diabetes for type 2. (Insert sigh)

Lois's body eventually rejected the new kidney, and it was removed, and she went back on dialysis. Unlike a lot of people on dialysis, Lois went on working. When I last saw her, in September, she was busy at work. Lois died last week at the age of 41 years. It had been thirteen years since her kidneys had failed. In those thirteen years, Lois accomplished more than most people accomplish in a life time.

I went to her memorial service this evening. Today is the transgender day of remembrance. For the past many years, we in Chicago have had a memorial service for the dead (killed by transphobia) followed by a celebration of living transgender people. Our celebration has taken the form of a talent show (I've performed a couple of times), and the master of ceremonies was Lois.
Tonight we did not have a talent show. We had a memorial for Lois instead. Her mother and sisters were there. Her church family was there, and the transgender community showed up in droves. The room in which we met has 156 seats. Every seat was filled, dozens of people sat on the floors, and a small crowd stood near the doors.
People were there for more than one reason. Those of us who spoke mentioned three. Lois was a mentor to hundreds (if not more) members of Chicago's TGLB community. She founded and ran groups. She inspired people. She made us want to be the people she said we could be (reason one). Lois was also community to a lot of people. She was a faithful churchgoer, and she still knew the people she had known in high school. She drew people into all of her communities- her faith community, the queer communities (which she kinda created), and communities of activism (reason two). She was also a vibrant, funny, fun, humble, righeous person that people just liked (reason three).

One of the things I found myself thinking about during and after the memorial service (though I was mostly thinking about Lois and about what I wanted to say about Lois in my speech) was that if Lois had given up when her kidneys failed- if Lois had lived the typical (for Americans) two years on dialysis or if her spirit had failed her then- then most of us there wouldn't have known her. Lois's huge accomplishments happened while she was sick, while she was making two or three appointments per week for dialysis, or dealing with a transplant, which had its own problems. Renal failure is not the end of life.

Lois died fairly young, but she got done a whole lot that wouldn't have happened had she died younger. I can only hope that I get as much done in my life, whether I die at 40 or 80 or 120.

Causes of Vision Impairment in Diabetics

2011-11-19T21:11:00.003-06:00

The CDC just released a report saying that the percentage of adult, non-institutionalized, civilian, diabetics who answer yes to the question "Do you have any difficulty seeing even with glasses" has declined, from almost a fourth, to a sixth.

Here's a fact you probably didn't know: Diabetes increases risk of multiple eye diseases.

Although the eye disease most associated with diabetes is diabetic retinopathy (the majority of people who have had any type of diabetes for at least twenty years have some retinopathy, although only a minority will actually go blind from it), diabetes also significantly increases risk of the other two major causes of eye diseases of adulthood: cataracts and glaucoma. Diabetics are also over represented among people who go blind from strokes or traumatic brain injuries.

There are also syndromes that cause both blindness and diabetes. For example, Wolfram Syndrome. Wolfram Syndrome is a recessive genetic disorder that causes a non-autoimmune type 1 diabetes, with onset in childhood (average age of diabetes onset in Wolfram Syndrome is 6 years). Roughly 1 in a 1000 people with childhood onset type 1 diabetes has Wolfram Syndrome; roughly 1 in 400,000 people is born with Wolfram Syndrome. The gene for Wolfram Syndrome was the first gene found that always causes type 1 diabetes. People with Wolfram's develop type 1 diabetes, but also a whole lot of other things including diabetes insipidus, hearing loss, weakness, atrophy of the eyes, and in adulthood, neurological degeneration that often leads to death. Wolfram Syndrome is probably under diagnosed.
Note: I am referring to the diabetes of Wolfram's as type 1 diabetes because it is caused by an inability to make insulin- the pancreas is the target of the disease, and it does not cause insulinn resistance. Some people prefer to see it as a different sort of diabetes.
Diabetes is also associated more strongly with autoimmune diseases that cause visual impairment, such as Graves' and MS.
Premature babies (who may develop retinopathy of prematurity) are slightly more likely to go on to develop diabetes later, although I don't think it's a very significantly increased risk.

There are some really rare syndromes that increase risk of diabetes and retinitis pigmentosa, but they're not generally related.

Macular degeneration, which is extremely common in old people, is associated with some lifestyle issues that are also associated with type 2 diabetes; despite that, I am not aware of any statistical correlation between the two diseases.

So What if It's Autoimmune?

2011-11-18T15:57:00.003-06:00

Roughly 80% of cases of type 1 diabetes are autoimmune (where type 1 diabetes refers to diabetes caused by an absolute lack of insulin).
Additionally, at least 15% of cases of type 2 diabetes have an autoimmune component.

What does this mean?
Antibodies are produced by cells made in the bone marrow (the immune system is mostly made of cells made in the bone marrow, thymus, and spleen). In order for a person to develop an autoimmune disease, xe needs to have a semi-functional immune system, which means xe needs to have bone marrow.
The only medically likely transmission of type 1 diabetes has occurred through a bone marrow transplant in which the donor was a type 1 diabetic. In the most published case, the recipient was the sister of the donor. She received the transplant at the age of 25, when antibody negative, and was diagnosed with diabetes at age 29, at which time she was antibody positive. http://www.ncbi.nlm.nih.gov/pubmed/8098394
A longer summary of all cases of bone marrow donation by type 1 diabetes is here; the short story is that most recipients do not develop type 1 diabetes but a lot more than could be randomly expected to, do.
The role of the bone marrow in creating autoimmunity means that bone marrow transplants have the possibility of causing auotimmunity- but they also mean that bone marrow transplants have the possibility of curing autoimmunity. What happens to a person's autoimmune disease when you kill off the person's bone marrow, and then give xem a bone marrow transplant?
Answer: Just about anything. In a fairly famous series of clinical trials, doctors removed and radiated bone marrow,killed off the bone marrow left in the body, and then replaced the bone marrow in the patients, who were newly diagnosed type 1 diabetics. Some of them no longer had diabetes. In some, the autoimmunity and diabetes reoccurred. In some, it didn't go away in the first place.
Currently, if you are a newly diagnosed adult type 1 diabetic (antibody positive and never been in DKA), you are eligible to participate in such a trial at the hospital I go to.

Autoimmunity also means that immunosuppressants have some chance of preventing, treating, or even reversing the disease. Type 1 diabetics who go on immunosuppressants rarely have a full remission but are more likely to make more of their own insulin. In some type 1 diabetics, the autoimmune process seems to have been a one time deal- the antibodies came, they marked the territory, the macrophages came and gobbled up the beta cells, end of story. In other cases, it seems to be more of an ongoing battle- the antibodies came, they marked the territory, the body went and made more beta cells, the macropaghes came and ate the marked beta cells, repeat ad infinitum. In the latter case, immunosuppression may be more likely to make a difference.

Another reason to care if it's autoimmune: the more autoimmune diseases you have, the more you're likely to develop.

2011-11-17T23:32:00.002-06:00

Today I was out and about and ran into a Deaf (capital D signifies person is culturally as well as physiologically deaf) friend. We spent a couple of hours chatting. My signing skills are not fluent (I was flattered when she said I was going too fast at one point- mostly my signing is sloooow) and her English is not fluent (although, her written English is definitely better than my sign). So we were chatting in a less than fluent manner. And, not for the first time, we got to talking a bit about diabetes (Dexcom alarmed high while we were talking). She didn't know the sign for diabetes so she accepted the sign I used- a d backed a closed mouth. But the most common sign for diabetes is just the sign for sugar (which I find problematic because that word means too many things and the little context things, I don't pick up on). Various variations of a d handsign near the neck or mouth are also used sometimes in ASL.
In other words, there is no standard sign for diabetes.

So here's my question for you. If you were making up a gesture to mean diabetes, or something about diabetes, what would it look like?
There are standard signs for things like injection, btw- we actually were talking about injections too.

How Much Insulin Do Other People Take?

2011-11-16T23:48:00.003-06:00

I was trying to write a post on partial diabetes remissions (honeymoons) when I came across the following problem:
Type 1 diabetics need insulin, right. In full blown type 1 diabetes, our bodies make very little insulin, so we need to inject enough for all of our needs. If a person needs a very small amount of insulin, or no insulin, and still gets decent blood sugars, we can assume that a person is making insulin. Also, if a person needs an unusually large amount of insulin, we can assume that the person has insulin resistance.
So the question is, what is a normal amount of insulin for a type 1 diabetic who isn't making any to need? Generally in studies on people with type 1 diabetes that are looking for people still making some insulin, a lower cut off is used based on insulin use plus bodyweight. The most common lower cut off is 0.5 u/kg/day, although sometimes cut offs of 0.4 u/kg/day or even 0.3 u/kg/day. Below 0.3 u/kg/day, it is very clear: you're making insulin.

I looked further at two large scale studies. One of them was a Polish study of over 22,000 children and adolescents with type 1 diabetes who were at least two years post-diagnosis (which probably means that a very few were still making insulin). Normal insulin use varied by age, sex, andwhether the person used shots or a pump. Puberty clearly caused an increase in insulin need. The difference between insulin needs in injectors and pumpers most probably had to do with different ways of calculating insulin use- in fact I think the pumpers' insulin usages should probably be used for computing everybody's normal. If you are under 25, you may want to click over to take a look at the graphs for yourself. In people my age, they find that the the 95th percentile of insulin usage was roughly 1.2 u/kg day; the 75th percentile was roughly 0.9 u/kg/day, the 50th percentile was roughly 0.75 u/kg/day, the 25th percentile is roughly 0.55 u/kg/day, and the 5th percentile is roughly 0.4 u/kg/day.
http://eje-online.org/content/158/4/543.long

The other study I looked at was a Japanese study including all adults diagnosed with type 1 diabetes under Japanese criteria, which almost certainly includes a large number of people with what we'd call LADA and other who are making a large amount of their own insulin. In the group of 400 people dx'd under the age of 20, the average insulin use was 0.9 u/kg/day; in the group as a whole, average insulin use was 0.7 u/kg/day.
http://www.jstage.jst.go.jp/article/endocrj/55/6/1025/_pdf

By the way, to compute your insulin use in this form, you first have to figure out how many units of insulin you use on the average day, which may or may not be easy depending on if you use a pump (which will figure this out for you) or, if on MDI, how consistant you are about how much insulin you use. Anyway, once you have that figure, you can divide by your weight in kilograms. Alternately, you could multiply the number of units you use per day by 2.2, then divide by your weight in pounds.
For instance, I use roughly 35 units of insulin per day. To the nearest kilogram, I weigh 45 kilo. That makes my insulin use 0.78 u/kg/day, which makes my insulin needs well within the normal range for a person my age.

What does this mean for you? If you take less than the 5th percentile of insulin usage without taking oral medications, it means you might want to see if you really have a form of diabetes in which treatment with oral medications is possible.

Postcard Exchange

2011-11-16T12:56:00.003-06:00

For World Diabetes Day I participted in a postcard exchange. I was sent a name and address and I sent the postcard above. It's impossible to read in the picture; on the actual postcard I realized the contrast wasn't so great on the circle itself where I put a timeline, but I pressed hard so the letters were readable by me and my parents (they have old people vision). I wrote a bit about me on the sides (including the address of this blog), and I mailed the postcard to David.
In return, I recieved the layered, detailed, artsy postcard above (that's the front of it). The postcard he sent has two layers- two white cards, with a blue card in the middle. The blue circle was created by cutting a hole on the paper so you can see the blue below, and The back said it was from David, who has had type 1 diabetes longer than I've been alive (he was diagnosed in 1986- I was born in 1988). His one word about diabetes is fight, which he exemplifies with advocacy and with continuing on, even though he is legally blind. There is no excuse to give up, he says.
I do sometimes think that people with other disabilities are under represented on the diabetes online community, and I'm glad to see more of that presence. I also do find some hope in people with complications getting along with their lives because it makes my future less scary, because retinopathy had already occurred in 86% of the Wisconsin Diabetes cohort, 20 years post diagnosis.

David, I hope you were able to magnify my card to readability or found somebody to read it to you. Thanks for the card!

2011-11-15T23:58:00.003-06:00

Uh-oh, I have about two minutes to stick in a fact for today.

How's this: Early versions of the oral glucose tolerance test were done with blood from the earlobe.

You can test blood sugar from a wide variety of spots but will get the wrong mix of serum (which has more sugar) and whole blood (which has more protein and therefore less sugar) to compare. However, the most commonly used spots are: fingers (includes thumbs), base of thumb, forearm, toes, heels (in babies that don't walk yet), and yes, earlobes. Toes are not recommended for anybody with neuropathy.
Dr. Bernstein recommends the part of the fingers that are between the knuckles but I couldn't get enough blood there when I tried it myself.

Ketoacodis - Some Strange Cases

2011-11-14T12:22:00.003-06:00

If you have type 1 diabetes, you have probably been warned about diabetic ketoacidosis- and if you haven't been, I'm warning you now.

Diabetic ketoacidosis is an acute complication of lack of insulin, relative or absolute, usually from type 1 diabetes. Here's what the term refers to:

Acidosis: arterial blood has a pH level that it likes- the normal range is 7.35 to 7.45 (slightly basic) Generally speaking, the diagnostic criteria for acidosis requires pH level to be equal to or less than 7.30, although sometimes acidosis is diagnosed or treated between 7.30 and 7.34

Keto: related to ketones. Ketoacidosis is acidosis caused by the presence of ketones, which for diagnostic purposes may be found in the blood or urine; in ketoacidosis there are usually ketones in both the urine and blood

Diabetic: having to do with diabetes. A person may be diagnosed with diabetic ketoacidosis by ADA standards if blood sugar on admission is over 200. Some places use a blood sugar cut-off of 250 or 300, and some places will diagnose "diabetic" ketoacidosis with blood sugars below 200 if the patient is known to have diabetes.

Diabetic ketoacidosis can develop in hours or it can take some time (maybe a month). It is a medical emergency and you can depend on being hospitalized if you are diagnosed with it. Severity ratings for ketoacidosis depend on pH levels (7.25-7.3 is mild, 7.00 to 7.25 is moderate, below 7 is severe) and/or symptoms. Death from ketoacidosis that is treated occurs at very different rates at different hospitals, but depends a lot on the severity of the ketoacidosis when treatment starts. Death rates for mild ketoacidosis may be below 1 in 200; death rates for severe ketoacidosis are as high as 1 in 5 when treated (untreated, all cases of severe ketoacidosis would likely lead to death).

Diabetic ketoacidosis risk factors include: being sick, especially when throwing up, pregnancy, not taking insulin, severe insulin resistance, insulin pump failure, eating disorders, being undiagnosed.

Now for some things you didn't know:

1. Diabetics go into ketoacidosis without high blood sugar more commonly than non-diabetics.

This article describes cases "euglycemic diabetic ketoacidosis". It is one of the first articles to describe the idea; a lot of diabetics with ketoacidosis who did not have very high blood sugars. The author suggests a blood sugar of below 300 as euglycemic, which has some obvious flaws (299 is a high blood sugar) but to be fair, he has 16 cases with blood sugars below 200, and 7 are below 100 (lowest blood sugar with a DKA diagnosis? 36!) All but one patient was already diagnosed with type 1 diabetes, hence the "diabetic" label. On what grounds ketoacidosis was diagnosed, I am not certain, given that he doesn't seem to have measured blood pH levels at all. Patients were symptomatic of ketoacidosis and had ketones.

Abstract of study comparing rates of DKA in women with type 1 diabetes who were or weren't pregnant, and, when they did go into DKA, how high their blood sugars were. The pregnant women went into DKA more often and at lower blood sugars. Average blood sugar in DKA for pregnant women was 293 mg/dl and for non-pregnant women the average blood sugar in DKA was 495 mg/dl. There was also one case of ketoacidosis in a pregnant woman without high blood sugar.

2. Starvation can cause ketoacidosis, with or without diabetes.

Case of euglycemic ketoacidosis in a type 1 diabetic who had stopped eating for two or three weeks. His blood sugar was 105 mg/dl, pH was 7.3 (mild ketoacidosis), ketones large, A1c 11.5%.

Starvation ketoacidosis in a man eating a fruit-only diet (BMI 16). His venous pH was 7.08, which means he was in moderate/severe ketoacidosis. His blood sugar was normal on admission, went into the upper 500s when he was fed, went down with insulin, stayed down without insulin. Source

Case report described as ketoacidosis in which a man eating a low carb (15grams of carbs per day) diet for three weeks was admitted to the hospital with a high blood sugar (267 mg/dl) and very slightly low pH 7.34 with ketones. He was treated for diabetic ketoacidosis. His blood sugar went normal and stayed there without more insulin. He does not meet true criteria for DKA because his pH was 7.34, and while that is low, it's not low enough to meet diagnostic criteria. His only symptom was abdominal pain.

Type 1 Diabetics are way more likely to be diagnosed with DKA, but between 5 and 20 percent of cases occur in type 2 diabetics.

Case report of ketoacidosis in a pregnant woman with type 2 diabetes. She was admitted with a pH level that was a little low (7.32) and a blood sugar of 77, but her pH level dropped to 7.23 (moderate acidosis) with a blood sugar still below 100. She had ketones.

Having blood ketones and urine ketones doesn't mean you have ketoacidosis, but a blood ketone level above 1.5 is a good reason to get it checked out

This study looked at all people coming to the ER with a blood sugar above 250, comparing those who were and weren't diagnosed with DKA, and suggesting using a blood ketone meter is better than using urine ketones for finding DKA- although DKA patients are equally likely to have high urine ketones and high blood ketones (that is, they have both urine blood ketones and high urine ketones) way more people who do not have ketoacidosis have high urine ketones, whereas most of the people who came to the emergency room with high blood ketones (about three fourths of them) had ketoacidosis. This study also makes the interesting statement that one fourth of people in the ER have diabetes. Out of the patients in the study who did have DKA, at least 10 out of the 56 had type 2 and not type 1 diabetes.

The second most common cause of ketoacidosis in the United States is alcoholic ketoacidosis, a form of alcohol withdrawal experienced by alcoholics.

My advice is that if you have diabetes, you should check your ketone levels more often if you start a new diet, are sick and vomitting, or pregnant. Especially pregnant! And if you care about somebody alcoholic or are trying to help an alcoholic sober up, encourage the person to eat something.

And now for a song (written by a medical student)

How Big Is Your Needle?

2011-11-13T19:45:00.002-06:00

If you inject your insulin using an insulin pen, you use needles.

If you inject your insulin with a syringe, you probably use needles.

If you have pump sites, you use needles.

It is possible to have diabetes without using needles- you could use a jet injector that uses intense force to push the insulin through your skin, and you could poke your finger to get it bleed with laser lights (or you could probably get away without checking your blood sugar). But I think it's pretty safe to say that if you've had type 1 diabetes in the last eighty years, you've used needles- many many times.

Your needle generally comes with two measurements- the length of the needle, and the gauge of the needle. For an insulin pen, you can use needles as short as 4mm or as long as 12.7mm. Neither of these are very long- 12.7mm is half an inch. If you use syringes, the shortest needle you'll get is 8mm and although really long needles are not meant for injecting insulin, you can use a longer needle if you chose to. Insertion set needles match cannula lengths and are typically 6mm or 9mm, although I'm not really sure what the range is. Sensors for Dexcom and Minimed are inserted with half inch needles.
The gauge of the needle is a nonlinear indication of the width or diameter of the needle. Confusingly enough, a bigger gauge indicates a thinner needle. Needles associated with diabetic use have gauges ranging from 32 (BD's nano pen needle) to 21G (Navigator sensor's inserter needles).

Why would you want a big needle? Well, to insert a sensor probe or a cannula, the needle clearly needs to be as wide as the sensor or cannula. I am not aware of any reason for insulin to need to pass through any large width of needle, but thinner needles may be more likely to break, especially if you reuse them, and they might be more expensive to make.
As for length of needle- for most of diabetes history, the goal has been to inject insulin into the fat tissue, although sometimes people aim at muscle or veins. You certainly do not want to inject the skin. And sometimes doctors don't want to worry about how thick your skin might be, so they inject long needles. If you inject very close to the skin but in the fat tissue, it's possible that if you inject a large volume of insulin, some of it will irritate the skin (where the pain receptors are) and that will make your shots hurt more. If you use a needle that's on syringe, the needle has to be capable of penetrating the top of the vial of insulin as well as going into you correctly, unless you are using luer lock syringes and changing the needle between filling the syringe and doing your shot.
However, many many studies have shown that having skin that's more than 4mm deep in any of the places people commonly inject insulin is rare, even in people who are morbidly obese. You can find those studies elsewhere on this blog.
For comparison- if you donate blood, your blood will be drawn with a 16G or 17G needle (OUCH) so that the blood cells don't get squished coming out of you.
Blood draws are typically done with 21G to 23G needles, and IV lines are typically 20G to 22G. You can see a chart showing gauge differences on wikipedia: http://en.wikipedia.org/wiki/Needle_gauge

Using the math you learned in middle school, you can figure therefore that a 32G pen needle that is 4mm long has a volume (not subtracting inner air) of .173 cubic millimeters.
A large end insulin needle is about 12mm long and 28G, which gives a volume of 1.235 cubic millimeters.
The Navigator sensor probe, at roughly 13mm long and 21G, has a volume of 6.686 cubic millimeters.
The Navigator sensor probe is roughly the size of needles used for blood draw.
If you have a doctor (or nurse!) express surprise that you or your child takes shots every day without much complaint but hates blood draws or IVs, please tell them this fact:

The needles used for blood draw are typically 5 to 30 times as large as the needles used for injecting insulin.

Are New Insulins Better?

2011-11-12T21:32:00.003-06:00

Insulin was first usefully injected into a diabetic in 1922.
By 1923, insulin was being produced and sold commercially for Eli Lilly and by Haegdorn Nordisk as a nonprofit. But the insulin they were producing was worlds away from the insulin that you and I inject today. For one thing, they got it from cows and pigs; for another, it contained significant impurities and was not at all concentrated. It took a little while to standardize strengths, so that a person didn't know how much ze was getting, and there weren't any options between insulin types.

In 1936, protamine zinc insulin was released from Nordisk. This insulin had been formulated to act more slowly, to reduce the number of daily injections needed. The protamine came from the semen of trout.

In 1946, Neutral Protamine Hagedorn insulin was developed, and it began to be sold in 1950. This was called neutral because it has a pH of 7.0 like water, protamine because it contained protamine, Hagedorn after Hans Christian Hagedorn (cofounder of Nordisk), and insulin because it contained insulin (from pigs). NPH Insulin is still sold today although it currently contains synthetic insulin and synthetic protamine.
NPH had and continues to have, two points in its favor. Point one is that it last a fairly long time- two or sometimes even just one, shot of it per day will provide some insulin coverage all day. Point two is that it can be mixed with other insulins. Mixing NPH with regular insulin (or, later, Novolog, Humalog, or Apidra) allows a person to, in just two shots per day, inject for breakfast (covered by morning regular), lunch/daytime basal (covered by morning NPH), supper (covered by evening regular), and bedtime snack/nighttime basal/dawn phenomenon (covered by NPH). Some people still wanted fewer injections, a smoother basal, and an insulin with less reputation for being inconsistant- which it was.

Of the insulins developed prior to 1990, NPH and regular are the only ones that are in any sense their same selves and modern insulins, proving that they work in FDA trials, have to show non-inferiority to NPH and regular. However, a number of other insulins were around in the latter half of the 20th century, and some were probably better than NPH as far as basal insulins go.

Anyways. Time went by. Pork insulin began being molecularly altered so that it was molecularly the same as human insuln instead of being off by a molecule. In the 1980s, insulin began being produced by genetically engineered bacteria. In 1983, Lilly started selling the stuff as Humulin (Humulin N, Humulin R, Humulin L, etc) and Nordisk followed suit five years later with the Novolins. Ironically, the new insulins were less pure. Also in the 1980s, the use of insulin pumps got really going. In the 1990s, the first insulin analogs appeared, claiming to have shorter durations of action and to therefore be more appropriate for mealtime injections as well as for pump wearers. These were Humalog and Novolog. In the first decade of the twenty first century, four new insulins- Lantus and Levemir for basal, Apidra and Exubera for bolus (Apidra claiming to be super fast and Exubera being inhaled) hit the US market. The last of the pork based insulins (and Exubera) left the market.
Currently, NPH and Regular sell for considerably less than Lantus, Levemir, Humalog, Novolog, or Apidra (oddly, Apidra is the cheapest and least often covered by insurance of the newer insulins). Most diabetics are started on the newer insulins.

So when I really read the package inserts for my insulins, looking to see how much people's A1cs had improved, I was in for a shock.

None of the newer insulins have shown themselves to improve A1cs by a significant amount in any study (I would consider it significant if it represented an A1c difference of 0.4 or greater, although none really did any better than 0.2 at the most), when compared to NPH and Regular. Many of them make the claim (some more convincingly than others) that they reduce significant episodes of hypoglycemia and/or that they improve after meal excursions. But they don't do it enough to alter the A1c or fructosamine scores in large studies of patients. I will include some links at the bottom, but here is my overall impression after reading studies looking at these insulins:

Novolog (insulin aspart). Some studies comparing Novolog to Regular found slightly improved A1cs in the Novolog group versus Regular; others found no difference. After looking at a lot of studies, it seems to me that Novolog wins- by a teeny tiny margin. Novolog users have A1cs about 0.1 lower than Regular users (difference between an A1c of 7.8% and 7.9%). I suspect this has something to do with the clearer need for Regular users to inject with time to spare before meals. Novolog users in open label trials consistantly preferred Novolog, probably because getting Novolog generally meant being told to inject right before eating instead of half an hour earlier. Novolog is associated with more stomach aches. Results on whether Novolog reduces hypoglycemic events are mixed but the overall answer seems to be that Novolog users have fewer really major hypoglycemic events- probably because they don't inject and then lose track of time and forget to eat.

Only one study comparing Humalog to Regular found that Humalog reduced A1cs compared to Regular; that one was a small (30 people, 19 on Humalog and 11 on Regular) study of adult pumpers that found a difference of 0.34 (difference in average A1c was 7.66 v 8.0). Many large studies found no difference whatsoever; the one study is either a fluke or it takes a pump to see a difference (I vote for fluke- that one study didn't look well done).

Lantus does not lower A1c compared to NPH in any studies, not even studies where NPH is being given only once per day, and people know they're trying Lantus. Lantus also doesn't have the 24 hour duration it's advertised to have (it lasts longer than 24 hours in most people) and it has more site reactions- it's not neutral, it's acidic, and it stings. It does seem to cause less hypoglycemia, probably because it doesn't have that middle of the night peak. It also is associated with lower wake up numbers- I am not sure I see the value in that.

Apidra is mostly compared to Humalog and Novolog instead of to Regular. It doesn't produce lower A1cs. Nuff said.

Levemir has been tried in twice a day shots compared to NPH twice per day and sometimes did a little better, sometimes not. Overall, a meta analysis seems to say that Levemir improves A1c by 0.05 percentage points- meaning that if the A1c tests were totally accurate to the degree of the reading (that is, an A1c of 6.5 always meant your A1c was betwee 6.45 and 6.54) then half of all A1cs would go down by the last number- say, from 7.9 to 7.8. Not a huge difference.

All of the insulins mentioned had the benefit that in some cases where a person was having weird reactions to another insulin, they were able to switch to another insulin and did better.

The major differences between the insulins were ease of use- one shot of Lantus per day vs two of NPH, injecting right before eating vs half an hour earlier- and price.

Sources:

Blurb of study comparing Novolog to Regular, claiming Novolog is better with unchanged fructosamine scores. http://www.ncbi.nlm.nih.gov/pubmed/10332685
Abstract of study of 29 patients on pumps comparing Novolog and Regular. Fructosamine scores were better with regular: http://www.ncbi.nlm.nih.gov/pubmed/11194244
Abstract of large (n=1070) open label study comparing Novolog and Regular; difference in A1c between Novolog and Regular was 0.12, in favor of Novolog- confidence interval 0.03 to 0.22
Large (n=882) open label study comparing Novolog and Regular; difference in A1c was 0.15 in favor of Novolog. Novolog was injected right before eating and Regular was injected half an hour before eating. http://care.diabetesjournals.org/content/23/5/583.long
Study (n=294) comparing premixed Novolog with NPH to premixed Regular with NPH; difference in A1c was 0.10 with a confidence interval that making it statistically insignificant .http://www.ncbi.nlm.nih.gov/pubmed/12027927
Small study comparing Apidra to Novolog and Humalog used in pumps. No difference in A1cs :http://www.ncbi.nlm.nih.gov/pubmed/21457066
Small open label cross over study (n=107) comparing Regular and Humalog- Humalog made no difference in A1c http://www.ncbi.nlm.nih.gov/pubmed/8750567
Small double blind study of pumpers (n=30) on Regular or Humalog- Humalog users had A1cs .34 lower: http://www.ncbi.nlm.nih.gov/pubmed/9032100
The abstract to this large (n=1008) three month study of Regular users and Humalog users indicates that A1cs were taken but does not report changes in A1c in conclusion, suggesting that Humalog did not perform better than Regular. http://www.ncbi.nlm.nih.gov/pubmed/9000704
In another paper on the same group, they say that the A1c decreased in both the Regular and Humalog users over the study period, by the same amount: http://www.ncbi.nlm.nih.gov/pubmed/9183237
Another paper written by people who took part in a part of the above study, they note that after the big study ended, the A1cs of the people on Humalog rebounded- to higher than before the study, despite staying on Humalog: http://www.ncbi.nlm.nih.gov/pubmed/9418839
The abstract to this study of roughly 500 type 1 and type 2 diabetics says that insulin lispro users averaged A1cs of 8.1 compard to 8.3 in Regular users: http://www.ncbi.nlm.nih.gov/pubmed/9083709
This meta-analysis did not find Humalog to be better than Regular in terms of long term blood sugar control: http://www.ncbi.nlm.nih.gov/pubmed/9377611
This study of kids with type 1 showed an insignificant difference in A1c between Humalog and Apidra users. http://www.ncbi.nlm.nih.gov/pubmed/21291333
This exchange of letters includes a good summary of studies comparing Humalog and Regular, showing that only one- the one with 30 people on pumps- showed a statistically significant difference in A1c and arguing that Humalog didn't really improve hypoglycemia either: http://www.cmaj.ca/content/159/11/1353.reprint
Study (n=534 type 1s) comparing NPH and Lantus showed non-significantly better A1cs in NPH users. http://www.ncbi.nlm.nih.gov/pubmed/10834423
Study (n=518) of type 2 diabetics using NPH or Lantus showed non-significantly better A1cs in NPH users (although Lantus users didn't gain quite as much weight): http://www.ncbi.nlm.nih.gov/pubmed/11315821
Study (n=619) of type 1 NPH users who did or didn't switch to once daily Lantus. Switchers had a statistically insignificant decrease in A1c. http://care.diabetesjournals.org/content/23/11/1666.long
Study (n=349) of kids with type 1 who had been taking NPH once or sometimes twice a day who did or didn't switch to Lantus once daily. Those who switched had insignificantly higher A1cs: http://care.diabetesjournals.org/content/24/11/2005.long
Very small (n=19) study comparing Levemir and NPH. No difference.
Review of large numbers of studies comparing NPH and Levemir finds Levemir reduces A1c by statistically significant amounts- 0.05. That is, about half of people with an A1c reading of 7.7 would get a 7.6 instead. http://www.ncbi.nlm.nih.gov/pubmed/22046606
Insulin was first usefully injected into a diabetic in 1922.
By 1923, insulin was being produced and sold commercially for Eli Lilly and by Haegdorn Nordisk as a nonprofit. But the insulin they were producing was worlds away from the insulin that you and I inject today. For one thing, they got it from cows and pigs; for another, it contained significant impurities and was not at all concentrated. It took a little while to standardize strengths, so that a person didn't know how much ze was getting, and there weren't any options between insulin types.
In 1936, protamine zinc insulin was released from Nordisk. This insulin had been formulated to act more slowly, to reduce the number of daily injections needed. The protamine came from the semen of trout.
In 1946, Neutral Protamine Hagedorn insulin was developed, and it began to be sold in 1950. This was called neutral because it has a pH of 7.0 like water, protamine because it contained protamine, Hagedorn after Hans Christian Hagedorn (cofounder of Nordisk), and insulin because it contained insulin (from pigs). NPH Insulin is still sold today although it currently contains synthetic insulin and synthetic protamine.
NPH had and continues to have, two points in its favor. Point one is that it last a fairly long time- two or sometimes even just one, shot of it per day will provide some insulin coverage all day. Point two is that it can be mixed with other insulins. Mixing NPH with regular insulin (or, later, Novolog, Humalog, or Apidra) allows a person to, in just two shots per day, inject for breakfast (covered by morning regular), lunch/daytime basal (covered by morning NPH), supper (covered by evening regular), and bedtime snack/nighttime basal/dawn phenomenon (covered by NPH). Some people still wanted fewer injections, a smoother basal, and an insulin with less reputation for being inconsistant- which it was.
Of the insulins developed prior to 1990, NPH and regular are the only ones that are in any sense their same selves and modern insulins, proving that they work in FDA trials, have to show non-inferiority to NPH and regular. However, a number of other insulins were around in the latter half of the 20th century, and some were probably better than NPH as far as bolus insulins go.
Anyways. Time went by. Pork insulin began being molecularly altered so that it was molecularly the same as human insuln instead of being off by a molecule. In the 1980s, insulin began being produced by genetically engineered bacteria. In 1983, Lilly started selling the stuff as Humulin (Humulin N, Humulin R, Humulin L, etc) and Nordisk followed suit five years later with the Novolins. Ironically, the new insulins were less pure. Also in the 1980s, the use of insulin pumps got really going. In the 1990s, the first insulin analogs appeared, claiming to have shorter durations of action and to therefore be more appropriate for mealtime injections as well as for pump wearers. These were Humalog and Novolog. In the first decade of the twenty first century, four new insulins- Lantus and Levemir for basal, Apidra and Exubera for bolus (Apidra claiming to be super fast and Exubera being inhaled) hit the US market. The last of the pork based insulins (and Exubera) left the market.
Currently, NPH and Regular sell for considerably less than Lantus, Levemir, Humalog, Novolog, or Apidra (oddly, Apidra is the cheapest and least often covered by insurance of the newer insulins). Most diabetics are started on the newer insulins. So when I really read the package inserts for my insulins, looking to see how much people's A1cs had improved, I was in for a shock.
None of the newer insulins have shown themselves to improve A1cs by a significant amount in any study (I would consider it significant if it represented an A1c difference of 0.4 or greater, although none really did any better than 0.2 at the most), when compared to NPH and Regular. Many of them make the claim (some more convincingly than others) that they reduce significant episodes of hypoglycemia and/or that they improve after meal excursions. But they don't do it enough to alter the A1c or fructosamine scores in large studies of patients. I will include some links at the bottom, but here is my overall impression after reading studies looking at these insulins:
Novolog (insulin aspart). Some studies comparing Novolog to Regular found slightly improved A1cs in the Novolog group versus Regular; others found no difference. After looking at a lot of studies, it seems to me that Regular wins- by a teeny tiny margin. Novolog users have A1cs about 0.1 lower than Regular users (difference between an A1c of 7.8% and 7.9%). I suspect this has something to do with the clearer need for Regular users to inject with time to spare before meals. Novolog users in open label trials consistantly preferred Novolog, probably because getting Novolog generally meant being told to inject right before eating instead of half an hour earlier. Novolog is associated with more stomach aches. Results on whether Novolog reduces hypoglycemic events are mixed but the overall answer seems to be that Novolog users have fewer really major hypoglycemic events- probably because they don't inject and then lose track of time and forget to eat.
Only one study comparing Humalog to Regular found that Humalog reduced A1cs compared to Regular; that one was a small (30 people, 19 on Humalog and 11 on Regular) study of adult pumpers that found a difference of 0.34 (difference in average A1c was 7.66 v 8.0). Many large studies found no difference whatsoever.
Lantus does not lower A1c compared to NPH in any studies, not even studies where NPH is being given only once per day, and people know they're trying Lantus. Lantus also doesn't have the 24 hour duration it's advertised to have (it lasts longer than 24 hours in most people) and it has more site reactions- it's not neutral, it's acidic, and it stings. It does seem to cause less hypoglycemia, probably because it doesn't have that middle of the night peak. It also is associated with lower wake up numbers- I am not sure I see the value in that.
Apidra is mostly compared to Humalog and Novolog instead of to Regular. It doesn't produce lower A1cs. Nuff said.
Levemir has been tried in twice a day shots compared to NPH twice per day and sometimes did a little better, sometimes not. Overall, a meta analysis seems to say that Levemir improves A1c by 0.05 percentage points- meaning that if the A1c tests were totally accurate to the degree of the reading (that is, an A1c of 6.5 always meant your A1c was betwee 6.45 and 6.54) then half of all A1cs would go down by the last number- say, from 7.9 to 7.8. Not a huge difference.
All of the insulins mentioned had the benefit that in some cases where a person was having weird reactions to another insulin, they were able to switch to another insulin and did better.
The major differences between the insulins were ease of use- one shot of Lantus per day vs two of NPH, injecting right before eating vs half an hour earlier- and price.
Humalog (insulin lispro)
Blurb of study comparing Novolog to Regular, claiming Novolog is better with unchanged fructosamine scores. http://www.ncbi.nlm.nih.gov/pubmed/10332685
Abstract of study of 29 patients on pumps comparing Novolog and Regular. Fructosamine scores were better with regular: http://www.ncbi.nlm.nih.gov/pubmed/11194244
Abstract of large (n=1070) open label study comparing Novolog and Regular; difference in A1c between Novolog and Regular was 0.12, in favor of Novolog- confidence interval 0.03 to 0.22
Large (n=882) open label study comparing Novolog and Regular; difference in A1c was 0.15 in favor of Novolog. Novolog was injected right before eating and Regular was injected half an hour before eating. http://care.diabetesjournals.org/content/23/5/583.long
Study (n=294) comparing premixed Novolog with NPH to premixed Regular with NPH; difference in A1c was 0.10 with a confidence interval that making it statistically insignificant .http://www.ncbi.nlm.nih.gov/pubmed/12027927
Small study comparing Apidra to Novolog and Humalog used in pumps. No difference in A1cs :http://www.ncbi.nlm.nih.gov/pubmed/21457066
Small open label cross over study (n=107) comparing Regular and Humalog- Humalog made no difference in A1c http://www.ncbi.nlm.nih.gov/pubmed/8750567
Small double blind study of pumpers (n=30) on Regular or Humalog- Humalog users had A1cs .34 lower: http://www.ncbi.nlm.nih.gov/pubmed/9032100
The abstract to this large (n=1008) three month study of Regular users and Humalog users indicates that A1cs were taken but does not report changes in A1c in conclusion, suggesting that Humalog did not perform better than Regular. http://www.ncbi.nlm.nih.gov/pubmed/9000704
In another paper on the same group, they say that the A1c decreased in both the Regular and Humalog users over the study period, by the same amount: http://www.ncbi.nlm.nih.gov/pubmed/9183237
Another paper written by people who took part in a part of the above study, they note that after the big study ended, the A1cs of the people on Humalog rebounded- to higher than before the study, despite staying on Humalog: http://www.ncbi.nlm.nih.gov/pubmed/9418839
The abstract to this study of roughly 500 type 1 and type 2 diabetics says that insulin lispro users averaged A1cs of 8.1 compard to 8.3 in Regular users: http://www.ncbi.nlm.nih.gov/pubmed/9083709
This meta-analysis did not find Humalog to be better than Regular in terms of long term blood sugar control: http://www.ncbi.nlm.nih.gov/pubmed/9377611
This study of kids with type 1 showed an insignificant difference in A1c between Humalog and Apidra users. http://www.ncbi.nlm.nih.gov/pubmed/21291333
This exchange of letters includes a good summary of studies comparing Humalog and Regular, showing that only one- the one with 30 people on pumps- showed a statistically significant difference in A1c and arguing that Humalog didn't really improve hypoglycemia either: http://www.cmaj.ca/content/159/11/1353.reprint
Study (n=534 type 1s) comparing NPH and Lantus showed non-significantly better A1cs in NPH users. http://www.ncbi.nlm.nih.gov/pubmed/10834423
Study (n=518) of type 2 diabetics using NPH or Lantus showed non-significantly better A1cs in NPH users (although Lantus users didn't gain quite as much weight): http://www.ncbi.nlm.nih.gov/pubmed/11315821
Study (n=619) of type 1 NPH users who did or didn't switch to once daily Lantus. Switchers had a statistically insignificant decrease in A1c. http://care.diabetesjournals.org/content/23/11/1666.long
Study (n=349) of kids with type 1 who had been taking NPH once or sometimes twice a day who did or didn't switch to Lantus once daily. Those who switched had insignificantly higher A1cs: http://care.diabetesjournals.org/content/24/11/2005.long
Very small (n=19) study comparing Levemir and NPH. No difference.
Review of large numbers of studies comparing NPH and Levemir finds Levemir reduces A1c by statistically significant amounts- 0.05. That is, about half of people with an A1c reading of 7.7 would get a 7.6 instead. http://www.ncbi.nlm.nih.gov/pubmed/22046606

A List of Interesting Blood Sugar Monitors

2011-11-11T15:23:00.004-06:00

The Accu Chek Voicemate-this discontinued meter currently sells for over a thousand dollars (originally it sold for about five hundred dollars). In addition to talking, it had the unusual feature of reading off and identifying insulin types! It was intended for blind users and incorporated the Accu Chek
It used 4 microliters of blood and couldn't operate in cool (less than 50 degrees Fahrenheit) weather or in very hot (over 104 degrees Fahrenheit) weather.
The newer model of this meter, the Accu Chek Voicemate plus takes 1.5 microliters of blood but still can't deal with bad weather. The Accu Chek Voicemate Plus is not available in the US.

The Nova Max- this underrated meter uses two kinds of test strips- one for measuring blood sugar, one for measuring blood ketones. As a blood sugar meter, it uses the smallest blood sample of any meter- 0.3 microliters- but is not known for being especially accurate (although it meets FDA standards). As a blood ketone meter, it uses 0.6 microliters of blood. The Novamax is for sale currently (I use it as a ketone meter only). Insertion of strips into the meter is somewhat more difficult than standard.

The Accu Chek Aviva- my current meter. This is a larger clunkier version of the Accu Chek Nano- they both use Accu Chek Aviva test strips, which use 0.6 microliters of blood. The Nano is smaller and has a backlight but is not available in the United States. These strips incorporate numerous filters and checks and are known for being more accurate than most.

One Touch- the one touch line of meters includes the One Touch, One Toucher 2, One Touch Ultra Mini (in many colors), and One Touch Ultra. The use either of two different types of test strips- currenly one with blue stripes which advertises that it double checks its own results. They use 1 microliter of blood. The One Touch Ultra communicates with Dexcom and Minimed CGMs for automatic calibrations (which may or may not be desired).

The Accu Chek Compact is an all in one meter that stores a drum of test strips inside the meter, and has a detachable lancing device on the side. I don't like it because it uses 1.2 microliters of blood and the lancing device is a softclix and I prefer a multiclix.

The Glucowatch was the major precursor to CGMs. In fact, it was a continuous glucose monitor. Launched in 2002, the glucowatch was worn like a wristwatch and included two electrodes. It was moderately accurate- roughly as accurate as modern CGMs, which is to say that it had problems but was pretty good. Unfortunately, it caused skin problems for most users- including burns- and it cost a lot. Like the modern CGMs, it needed calibrations, incorporated a warm up period, and needed replacement sensors. Although three different models were released- the original Glucowatch, Glucowatch Biographer, and Glucowatch Biographer II- it was discontinued in 2007 and sales of sensors stopped in 2008.

There are many blood sugar meters for sale currently, because it is a high profit industry. I am aware of dozens of companies making meters- most of the companies that make meters make more than one. The things to look for in a meter, in my opinion, are test strip cost, accuracy, and blood sample size requirements (0.3 microliters is the smallest you can currently get and 0.3 to 1.5 is about the range. It matters more for some people than others). Extras that some people like are memory and averaging features, communication with a pump or CGMS, backlight, incorporated lancing devices or test strips, size, color and skins (stickers that go over the meter), display, and talking.

Diabetes on Mt Everest

2011-11-10T23:30:00.000-06:00

My CDE in the hospital where I went in the weeks following my diagnosis had a poster on her wall (or maybe it was on the door) of a guy climbing a mountain. She pointed it out to me to have a little discussion about how to deal with diabetes in extreme temperatures, because if insulin freezes, it's not good anymore. And as you may know, it's kinda cold on a mountain. According to my CDE, this type 1 guy climbed Mount Everest with his insulin taped to his skin to keep it warm.

I was sitting out in the cold today, getting ready to do a shot. My insulin was plenty warm, but I wasn't. And it occurred to me that the real question is, how did he safely bare his skin for the shot?

So, today's post is about the Everest climbers I can find who've climbed with diabetes.

First, the guy on my CDE's poster was probably Will Cross. As if being a high school principal wasn't enough adventure, Will Cross has attempted to climb Mount Everest numerous times. He didn't go all the way in 2004 or 2005; in 2007 he made it to the top. Will Cross was diagnosed with diabetes when he was nine; it was about thirty years later that he climbed Everest. He was sponsored by Novo-Nordisk, and was using Novolog and described as using Novolin-N (the NPH made by Novo-Nordisk) on his first couple climbs. He is described in the 2007 articles as wearing an insulin pump as well as using a NovoFlexPen. Some of the articles about his climb claim that he couldn't check his blood sugar, but he clearly says he did check his blood sugar- my guess is that the meter didn't always work when he wanted it to. He has a wife and six kids. He is an American.

Geri Winkler, also a teacher, was diagnosed with diabetes when he was 28 years old, in 1984. In 2006, he became the first diabetic to get to the top of Mount Everest. He was sponsored by Bayer, which makes a blood sugar meter and A1c now kits. He is from Austria.

Sébastien Sasseville first got to the summit of Everest in the year before he was diagnosed with type 1 diabetes. He climbed it again seven years later. He raised money for JDRF on the second climb. He is also affiliated with CWD and triabetes. He is Canadian.

There are a number of posts from John Jackson claiming that he and his son, Dan Jackson, were going to climb Everest earlier this year. His son is 17 and was diagnosed with diabetes + celiac aged 2. But I don't know what happened with that. They are British, and Dan uses a minimed pump. They were trying to raise money.

I thought it was interesting that all three (or four) diabetic Everest climbers used diabetes to help fund their expeditions. Also, that there are three or four type 1s climbing Everest- I think that means that, statistically and humorously speaking, being a type 1 diabetic is a risk factor for climbing Mount Everest!

Smoking and Diabetes

2011-11-09T22:49:00.002-06:00

It was getting late and I was short on ideas that interested me. Fortunately, I just so happened to pick up a trivia book my brother left around. The book is called Your Pinkie is More Powerful than Your Thumb: And 388 Other Surprising Facts That Will Make You Wealthier, Healthier, and Smarter Than Everyone Else and the author is Mark Di Vincenzo. The "facts" in the book seem to be hypotheses based on a studies. But one (on page 23) gave me an idea.
The book says: In the diabetes study, researchers followed 10,892 middle aged smokers who did not have diabetes from 1987 to 1989. Those who quit increased increased by 70 percent their risk of developing diabetes for the first six years after they quit [compared to people who'd never smoked]. Those who continued to smoke also increase their risk for developing diabetes- but by only 30 percent.

I looked for this study. I don't see it, but I did find another study (a Japanese one), of thirty thousand people, roughly 900 of whom reported quiting smoking between the first measurement and the second, who did not report resumed smoking. It followed all of these people for a few years. The fasting blood sugar of those who quit was significantly higher the next year, and the year after that, but then it began to go down. http://www.jstage.jst.go.jp/article/jea/21/6/21_431/_article

So: smoking increases diabetes risk and quitting smoking will, at least temporarily, make the risk a little worse.

If you already have diabetes, there are plenty of reasons to quit smoking, even if you are convinced you will die too young to worry about lung cancer.
Smoking messes with circulation; so does diabetes. Diabetic smokers have higher risks for a variety of complications compared to nonsmoking diabetics.

For instance, in the Wisconsin Epidemiology Study, which has been following 943 people diagnosed in a particular part of Wisconsin with type 1 diabetes under the age of 30, for about thirty years, the risk of having a toe, foot, or leg amputated after 25 years with diabetes was roughly 10%. Not exactly a small risk, IMHO, but the majority of participants had A1cs above 9%. The biggest risk factor for an amputation (in this group) was being a guy (triple the risk compared to women). The next biggest risk factor was smoking. People who had quit smoking had an intermediate risk. A1c was a significant risk; the people writing this up did not rank it as a higher risk factor than smoking and sex because they were looking at how much a difference in A1c mattered if you had an A1c of 8% vs 11%, which didn't matter as much as the difference between 11% and 15%. Running a crazy high A1c like 15% will run you into all kinds of trouble.The Article
BTW, not so fun fact (cited in article above) if you compare type 1 and type 2 diabetes with the same diabetes duration, the type 2 diabetics are at higher risk of having something amputated.
In the same population, smokers were two and a half times more likely than non smokers to have had severe hypoglycemic episodes in the previous year- either because smokers don't take care of themselves generally, or because smoking makes your hypoglycemia awareness worse. Severe hypoglycemia was hypoglycemia that made them pass out or have an overnight hospital stay (or both).

Who Pays For Diabetes Research?

2011-11-08T18:49:00.003-06:00

It's hard to look at the shifting trends in topics about diabetes being studied without wondering what drives them. Who does diabetes research? Who pays for it? Who approves it? Why?

I can only begin to answer those questions. Some diabetes research is, clearly, paid for entirely by drug companies who are hoping that the results will help them sell their product or improve their odds of getting the product past the FDA or other regulatory bodies. Some small research is done by individual physicians who simply wish to share their observations or to study something that makes them curious, or by graduate students looking to write papers. Some research is funded and driven by well known diabetes names- the JDRF, the ADA, or the Iaccoca Foundation- that get money from donations from individuals, corporations, and sometimes governments. The ADA and JDRF often fund research done by drug companies (if you look up research by grant type on the ADA website, you'll notice that four of the grants are named after drug companies- Novo Nordisk, Takeda, and Merck).

A tremendous amount of diabetes research however is funded by tax monies. The United States Government has pledged $150 million per fiscal year for type 1 diabetes research for the past few and upcoming two years. The money is given to researchers and organizers after approval from the NIDDK. This money has gone to fund well known projects, such as trialnet (which two of my siblings participated in) as well as lesser known projects.
To compare these monies, the American Diabetes Association reported, for the fiscal year ending in 2009, income of $261 million, $141 million of which went to programs, which I think includes research.
The JDRF reported $198 million dollars income for a recent year, $156 million of which was spent on programs, which, again I think includes research. (Source: Charity Navigator)

A search on pubmed brings up 115 articles in which the authors acknowledge receipt of JDRF monies. Of these, 6 were published in the past year. Of these, one was a survey on quality of life in type 1 diabetics. One was about inflammation but otherwise was medical gobbledygook to me. One was a report of laboratory research that might translate into a prevention/treatment of diabetic kidney disease. One was a triggr follow up, which is a study of siblings and offspring of type 1 diabetics looking to find anything that might be responsible for triggering type 1 diabetes. In this case they are looking to see if a hypoallergenic formula might prevent diabetes. Another was a study on preventing kidney disease in diabetic rats. The last was a study looking to see how certain medications used to treat type 2 diabetes affect beta cells.
A search on pubmed brings up 149,792 articles in which the authors acknowledge connection to the NIDDK. Most do not have to do with diabetes. Out of the most recent three hundred articles, all published since this summer, twenty four were about diabetes, nine of the twenty four being clearly relevant to autoimmune type 1 diabetes, one being about HIV related diabetes, one being about the creation of the monogenic diabetes register, and thirteen stating that they were about type 2 diabetes or insulin resistance. A lot of research was done on transplantation.
Searching for ADA funded research is a little harder, because I keep getting articles done by people named Ada. Also, I get articles not funded by the ADA that cite "ADA guidelines"

Diabetes research done outside the United States has a lot in common with US research when it comes to drug industry funded research. However, other countries have other interesting slants and focuses. For instance, researches in various European countries have countrywide health databases to mine data from. Researchers in some places with standardized medicine do research looking to find that it's safe to reuse needles, for instance, or to promote cheaper ways of dealing with diabetes. Certain Asian and South American publications try to compare their populations' diabetes to that of Americans (the Japanese publish quite about about fulminant diabetes in the elderly).

Genetic Drift and Type 1 Diabetes

2011-11-07T22:53:00.000-06:00

Almost all types of diabetes have a known genetic component. A very small number of diabetes types are determined by one gene- you got the gene, you got the diabetes. A much larger portion of diabetes types and cases are multifactorial in cause, but also in the specific genetic cause.

Meaning, as a type 1A diabetic, that my likelihood of developing diabetes was strongly impacted by MULTIPLE genes in the region of the genetic code where there is more variability in genetics, but that some factors other than my genetics certainly impacted the fact that I got diabetes- if type 1A diabetes was totally genetic, identical twins would always both have it or both not, and that's not how it goes.

Anyways, one of the interesting things about the genetics of type 1 diabetes is that the highest risk genes are heterozygous. That means that, unlike in straight up genetic diseases where having two parents carrying the same faulty allele (carriers) resulting in an increased chance of the disease, in type 1 diabetes, the highest risk comes for people who have combinations of different high risk alleles, not two of the same high risk allele (an allele makes up one parent's contribution towards a gene). If this paragraph didn't make sense to you, don't worry about it. Do ask me to clarify if you know how to get me to word it better though.

Anyways. One of the more unusual explanations for increases and decreases in disease are based on which genes are becoming more and less common. This is based partly on who has how many kids (that determines allele frequency), but also on who people have their kids with. It should be obvious that certain diseases (like the above mentioned recessive genetic disorders) are less common if people are having their kids with people who are not their fourth cousins, etc. With more complex genetically influenced diseases (including most autoimmune diseases), it's a little harder to predict what population mobility will do to disease patterns.

However, one of the things that seems to be happening is that, more so than in previous generations, people are choosing to have children with partners whose alleles in the areas that code for the immune system are complementary- they are picking to have kids with people whose immune systems are different from their own. This is mostly a good thing (at least according to theory) but it is resulting in more people of my generation and below who have the high risk genes for developing type 1 diabetes.

Unfortunately, this theory is not supported by the American evidence, which says that among those diagnosed with diabetes as kids in the last many years, fewer these days have the high risk immune system genes. I was looking for the article on which I based most of this post, and found instead some studies comparing the frequency of the highest type 1 diabetes risk genes in the US and saying that it's gone down, and now I sort of feel like erasing what I wrote, but I won't. Instead I'll give you a link to this excellent article and count the fact of the day to be as follows:
The portion of children diagnosed with diabetes in the United States whose diabetes can be attributed to high genetic risk declined between 1965 and 2005.

Who Makes Insulin?

2011-11-06T21:19:00.002-06:00

In the United States today, there are four companies selling insulin.

In the United States, three companies produce the seven insulins for sale for human use (there's also vetsulin).
The seven insulins, in rough order from slowest to fastest are:

Lantus- marketed as a 24 hour steady rate insulin, often the first insulin type 2 diabetics are put on because it is usually given once per day. In type 1 diabetics, it is often used as the basal part of basal-bolus regimens. It has a low ph level that makes it sting. In actual studies, the time that it lasts in a person can be as short as 10 hours, and it hasn't been studied past the first 24 hours, when it's usually still active, and so works for some unknown length of time greater than 24 hours in most people. Also, many users find that it is a little stronger 4-8 hours after injection. Made by Sanofi (formerly known as Sanofi Aventis).

Levemir- marketed originally as a Lantus imitator, which doesn't sting. It seems to last 24 hours somewhat less often, but is for the most part used as though it was just like Lantus. Somewhat more frequently than Lantus, given twice daily. Made by Novo Nordisk.

NPH (Neutral Protamine Hagedorn) - a recipe of insulin plus additives developed in 1946. Its original charm was in being longer lasting than regular. It is visibly identifiable as the cloudy insulin, and most users take it twice a day. It peaks too strongly to be used only as a basal insulin for many people and takes too long to use for bolus; it is something of a combination insulin whereby it provides the background insulin for the day plus the lunchtime insulin. The main drawback of NPH is that users need to eat on schedule. The main advantage is that it is cheap. NPH is available for sale internationally under a variety of names. In the United States, it is sold as Humulin N by Eli Lilly, and as Novolin N by Novo Nordisk.

Regular- this is insulin made by genetically engineered e coli, molecularly identical to human insulin. It is (for most people) the slowest of the insulins used to bolus for meals, for some people not kicking in until an hour after injection and having a tail of action lasting as long as 8 hours. It's cheap. It is sold as Humulin R by Eli Lilly and as Novolin R by Novo Nordisk. It is also available as a concentrated insulin.
I recently switched over to this insulin and was surprised to find that it kicks in for me in under 15 minutes and does not have a tail past four hours (well, maybe five).

Humalog- this insulin has been altered to work a little faster than Regular, and it is almost the same as Novolog. Kicks in in 5-15 minutes, lasts four hours or less. It is used as a bolus insulin. It is made by Eli Lilly.

Novolog- the first of the insulin analogues, this insulin is molecularly altered with the goal of making it work faster than Regular. For most people, it does- kicking in in 5-15 minutes and finishing the job in 4 hours or less, typically. It is manufactured by Novo Nordisk. It is also available as a diluted insulin.

Apidra- the newest of the insulins on the market in the US, marketed as the most speedy insulin for insulin pump users especially. Manufactured by Sanofi (formerly Sanofi Aventis).

Also available are a variety of combinations involving NPH. All of the insulins with numbers in their names are a combination of NPH with something. Novolin 70/30, for example, is 70% NPH with 30% Regular. Humalog Mix 75/25 is 75% NPH based on Humalog with 25% Humalog. There are no real advantages to a premixed insulin and a number of huge disadvantages. The biggest of these is that it's much harder to correct a high blood sugar if you don't have a fast acting insulin that's not attached to NPH.

Eli Lilly has the distinction of having been in the insulin manufacturing business the longest; the company was actually started for the purpose of making insulin within a year of the discovery of insulin. It is based in Indianapolis, Indiana (HQ is visible from the greyhound bus riding in and out of Indianapolis) but insulin is no longer its focus; it is the maker of prozac and cialis, among other drugs. It reported more than 5 billion dollars of profits last year, and has a little under 40,000 employees.

Novo Nordisk is based in Denmark and somehow the artwork on my Novo Nordisk stuff really seems to show that. Nordisk has been in the insulin business almost as long as Eli Lilly (it was started in the same year for the same purpose for the European market) and is the inventor of NPH. Annual profits are over 2 billion dollars and it has roughly 30,000 employees.

Sanofi Aventis is based in Germany, and apparently changed its name to plain old Sanofi more recently than the boxes in the stores reflect. It has over 100,000 employees, and makes more than 6 billion dollars in profits a year.

All three companies have been involved in really shady medical/business practices, including hiding important information for regulatory bodies in ways that probably or definitely resulted in people's deaths. Eli Lilly and Novo Nordisk both have programs in place that provide insulin (among other things) to people living in poverty.

Vetsulin, the insulin marketed for dogs (although probably most diabetic dogs on insulin are being given one of the insulins above) has the distinction of being the only animal (pig) derived insulin still being sold in the US. It is made by Merck and Company, and oddly enough, it's not cheaper than NPH or Regular. It is sold at a more diluted strength.
Merck is headquartered in the US, where it was founded in 1891. It grosses roughly 5 billion dollars per year, with about 1 and a half billion being profit. It has roughly 94,000 employees.

What's a Sugar, Anyways?

2011-11-05T20:09:00.003-05:00

A carbohydrate is basically water plus carbon. Somehow I managed not to learn this until I was in earth system science, a class that I took mostly for fun, where all but one of my classmates were majoring in earth science, physics, chemistry or biology (the other outsider was majoring in journalism). My classmates all knew the following stuff already, but it was new and fascinating to me- maybe it will be to you too.

Anyways- when plants use photosynthesis, they take six carbon dioxide molecules (1 carbon atom plus two oxygen atoms) and six water molecules(two hydrogen atoms plus one oxygen atom) and turn that into six carbohydrate molecules (each with one carbon atom plus two hydrogen atoms plus one oxygen atoms) plus six oxygen molecules (each with two oxygen atoms). The chemical formula looks like this: 6H₂O (water) + 6C0₂ (carbon dioxide) -> 6CH₂O (carbohydrate) + 6O₂ (oxygen)

Animals do the reverse in respiration. We take carbohydrates and oxygen and turn that into carbon dioxide and water. That literally means that we need carbohydrates in order to breath.

That is also why we need sugar in our blood; because this respiratory process, by which we get energy, requires carbohydrates and oxygen.

I really wanted to write about types of sugar. I was thinking about all those things that end in -ose: dextrose, glucose, fructose, lactose, maltose, etc. I was hoping to find a definition of sugar and to be able to list them all. Apparently sugar is not a scientific term, so I can't do this.

So instead let me tell you what the wikipedia article on carbohydrates tells me.
First, there are four general types of carbohydrates. Monosaccharides are usually the sorts called sugars, and then are in the formula of C_aH_2aO_a. Monosaccharides include glucose (which is the same as dextrose- I had no idea they were the same thing!), fructose, galactose, and others I never heard of.
Disaccharides are two monosaccharides smushed together minus a water molecule. They are often also called sugars. Disacharides include sucrose (table sugar- and it is made up of fructose plus glucose), maltose (made of two glucoses) and lactose (the sugar in milk- it is made of galactose and glucose).
Oligosaccharides are more monosaccharides smushed together. While we eat some oligosaccharides, others are in our bodies because of broken down polysaccharides.
Polysaccharides are lots and lots of monosaccharides smushed together (like hundreds). They include starch (as in the stuff you eat) and glycogen (as in the way the liver stores carbohydrates before turning into glucose).

So basically a sugar is a monosaccharide or a disaccharide, and a complex carbohydrate is an oligosaccharide or polysaccharide. And the reason that sugars raise your blood sugar faster is that your body has to convert these things into glucose- a monosaccharide- before it can be blood sugar. Phew!

Diabetes in Your Hair

2011-11-04T11:28:00.002-05:00

So far this month I've mentioned three places where diabetics can have more sugar.
More sugar in your blood (high blood sugar); more sugar attached to the proteins in your blood (high A1c); more sugar in your pee.

But those are not the only places where you can have more sugar. Diabetics' hair has been known since the 1960s to have different levels of sugar and trace minerals. In this article, 46 diabetics(27 of them type 1) and 50 nondiabetics got a haircut. The hair was analyzed for the presence of fructosamine (a product of fructose- a type of sugar- plus either ammonia or protein- I think). There was fructosamine in all of the hair samples; there was roughly twice as much fructosamine in the hair of the diabetics. The diabetics with higher A1cs tended to have higher levels of fructosamine in their hair.

Other studies with online abstracts or results:
Comparing type 1 diabetic women, women with gestational diabetes, and normal women.
Comparing correlations in hair to A1c, fructosamine over different lengths of time
A study of 41 type 2 diabetics comparing hair fructosamine to fructosamine values at the time and over the course of the year

Analyzing hair has been suggested as useful in finding average blood sugar in diabetics, but also in seeing differences in blood sugar over a long period of time, since a single hair may have been growing for over a year and may provide a record of blood sugar over a longer period of time than an A1c. This would be useful for many reasons, including assessing risk of complications, letting your doctor know if it's really true that it's just in the last two weeks your blood sugar's been wonky, and figuring out if diabetes in a pregnant woman is merely gestational diabetes.

But the idea must have been forgotten by the medical community. I have never met a person whose hair was used for a test like this, and I have seen no articles on the topic published in the last ten years. Too bad. I think I might prefer a haircut to a blood draw- wouldn't you?

Alcohol and Diabetes

2011-11-03T22:25:00.002-05:00

Risk of death for diabetics has not been something that has gotten better and better over time, but I was not really pleased when I read this study some time back. It looked at records of people in Finland who had been diagnosed with type 1 diabetes between 1970 and 1999, below age 30. It then divided them into twelve groups. First, it sorted them into a group diagnosed at ages 0-14, and a group diagnosed ages 15-29, which it called early and late onset. It then divided each of those groups into six groups based on the year of diagnosis; diagnosed in 1970-1974, 1975-1979, 1980-1984, 1985-1989, 1990-1994,1995-1999. Then it looked at risk of death within various lengths of time from diagnosis in each group, hoping to see that the risk had gone down for those diagnosed in later years. And that is what it found- for those in the "early onset" group. That is not what it found for those in the later onset group. The risk of death doubled between the earliest time period group and the later.

I was somewhat reassured to find that the extra deaths could mostly be explained by something that I am not at risk of dying from. That something? Alcohol and drugs. The total number of deaths in the total groups were reassuringly small. However, when looking only at the twenty years after diagnosis, and looking only at those diagnosed in 1970-1989 (so that twenty years have passed), 83 out of 273 deaths in the older onset cohort and 63 out of 230 deaths in the younger cohort were due to alcohol or drugs. The rate increased over time in the late diagnosed group and decreased in the early diagnosed group- I suspect the decrease in the early diagnosed group is related to the percentage in that group that were diagnosed towards the younger end within the 0-14 age range (that is, there are more people diagnosed at age 2, who are not as likely to die from alcohol by age 22, and less people diagnosed age 10, who are more likely to be dying from alcohol by age 30).
So anyways: in the 20 years after diagnosis, the percentage of deaths from alcohol in the older cohort, who were all between ages 15 and 50 when they died, was very close to 25%. That's 1/4 of all deaths in that group.
In contrast, in Finnish people who died in 1999-2007 between ages 15 and 50, 15% of all deaths were from alcohol related causes- and the incidence of alcohol related deaths in Finns is on the rise, so I think it's safe to say that risk of death from alcohol is considerably higher if you are a young adult with type 1 diabetes. Source

It is possible that diabetics are simply more likely to drink than are other Finnish people, and maybe that's the reason they die of alcohol related causes more often. I don't think that's the whole reason though. I think the reason is that being drunk and diabetic is dangerous.

And that fits well with the warning label that is on all insulin boxes sold in the United States. The warning says: Do Not Drink Alcoholic Beverages While Taking This Medicine.

But it doesn't really jive with several very large studies done here in the US. This study quotes studies that point out that moderate drinking is associated with a lower risk of developing type 2 diabetes compared to both no drinking and heavy drinking (heavy drinking directly impairs pancreatic function) but this study itself looked at a huge group of diabetic adults, mostly type 2 but also type 1, and looked at how drinking correlated with A1c. It found A1cs of that were .5% lower (like the difference between an A1c of 9.2% and 8.7%) in those who had 2-3 drinks per day v those who never drank. However, this study had so few type 1s that we almost disappear from the data, and it definitely didn't look at death rates- it was a survey, meaning that you had to be alive to participate. It didn't even look at complication rates. However, similar studies have found lower complication rates (SLIGHTLY lower) in type 2 diabetics who consume alcohol.

The reason for this is actually not hard to find. Alcohol (in all sorts of people) impairs liver function for up to twelve hours. The liver releases sugars. Impairing the liver therefore reduces blood sugar for some time after alcohol consumption. When you drink with a meal, you may be reducing or even preventing your mealtime blood sugar spike.

Despite this potential long term benefit to drinking with diabetes, and despite the fact that most people with either type of diabetes who drink never have a health problem from drinking, there are some clear risks to drinking that are even more important for diabetics. Here they are:
-Drinking and being drunk makes it hard to make good decisions. Diabetes demands good decisions.
-Short term having the liver not release sugar can cause hypoglycemia for hours after drinking. Unfortunately, drinking makes it more likely that a person will become hypoglycemic and also decreases people's ability to feel hypoglycemia.
-Short term having he liver not release sugar causes a rise in ketone levels in all sorts of people. In type 1 diabetics this rise is more problematic, especially for those who run blood sugar high enough to put them at risk for ketoacidosis anyways.
-Long term risks of alcoholism are especially dangerous when you are diabetic. Although diabetes is the most common cause of ketoacidosis in the United States, alcohol withdrawal is the second most common cause. You also do not want to develop alcoholic liver or pancreas disease (OUCH).

The American Diabetes Association recommends that diabetics not drink heavily; frankly, nobody really should be drinking heavily.
I think the following things are the most important to remember around diabetes and drinking:
1. It's safe to abstain from drinking.
2. It's very possible to drink with diabetes without problems.
3. Drinking with diabetes may make you hypoglycemic for up to twelve hours later, and glucagon will not help if your liver is impaired.
4. You are less likely to feel your hypos if you are intoxicated, so check your blood sugar more, and maybe correct a teeny bit less.
5. Don't drink alone.
6. Don't drink enough to pass out; that way people can assume that if you are passed out, it's from diabetes.

Delineating Diabetes

2011-11-02T22:11:00.002-05:00

So, okay, diabetes (mellitus) is a disease (or maybe a group of diseases) where there is too much sugar. Fine.

Now the question is, how much sugar is too much? This is a question that is relevant for many reasons, and this question actually contains many questions. Here are some of the questions it contains:
1. What is the lowest blood sugar that is dangerous?
2. Is high blood sugar dangerous if it's just for a little while?
3. Is the dangerous part an average high blood sugar or time spent above a certain value?
4. Or is the danger actually in the thing that causes high blood sugar and not in high blood sugar itself?
5. Or maybe it's not high blood sugar, but unstable blood sugar that's dangerous?
6. Is blood sugar that's within the mathematically normal range necessarily good for you?
7. At what threshhold of high blood sugar (or urine sugar) is treatment a good thing?
8. Are different blood sugar levels normal or safe for some people compared to others?

Pretty much none of these questions have been fully answered (although some we are well on our way to answering) although they are important. These questions matter when we try to decide:
1. If we are diabetic, what blood sugar level do we correct highs at?
2. If we are doctors, what blood sugars do we call "controlled"?
3. How do we define diabetes?
4. At what point do we start or change treatment for diabetes?
5. Can you use anything other than blood sugar to diagnose diabetes?
6. If a person's blood sugar is measured as being high just once, is the person diabetic?
7. If a person has no symptoms, is the person diabetic?

Therefore, the definition of diabetes (and pre-diabetes!) has been and is different in different times and places.

Currently, the most common diagnostic criteria say that diabetes is diagnosed if:
1. One or both of these things happen at least twice:
a)A person has a fasting blood sugar (a blood sugar after nothing has been eaten in six hours) taken with a venous blood draw, that is 127 mg/dl or higher.
b)A person has a blood sugar at any time that is over 200 mg/dl- especially if it is in an oral glucose tolerance test.

Side note: The oral glucose tolerance test was developed and introduced as a way to diagnose diabetes in 1917. In the oral glucose tolerance test most commonly used, a person comes in fasting, has blood sugar checked, drinks a glucose solution (like flat soda) and then has blood sugar measured every half hour or hour for two to four hours. Diabetes or impaired glucose tolerance is diagnosed when any readings are high, or in a four hour test when the readings don't go back down. An intravenous glucose tolerance test has also been proposed (more than once), wherein a person is injected with glucose (or dextrose) into the vein, and time until the body gets a normal blood sugar back is measured. Source

2. Or the person's A1c is 6.5% or greater. This is a bit controversial because there are things that artificially elevate the Hemoglobin A1c reading, and when I was diagnosed, a scant five years ago, this was not considered good enough to diagnose diabetes- but now it is. The change was made in July 2009. Source

3.If a person is in ketoacidosis or a hyperosmolar coma, only one blood sugar reading above 200 is needed to diagnose diabetes.

Note: The cut-off value of 200 is arbitrary and has been set and reset over time. In some places a cut-off of 180 or 220 is used instead.

The American Diabetes Association also says that a person can be in remission from diabetes. If the person does not take any diabetes medication at all, and hasn't taken any in over a year, and has an A1c below 6%. Previously it has a definition of remission that said a person could have either normal fasting blood sugar or an A1c below 6% to be termed in remission.

Many places currently diagnose type 2 diabetes either by criteria 1 or 2, rather than both, and seem to see the 2009 change as having the A1c replace the blood sugar criteria instead of being in addition to it- a definition I see as problematic, given that a person can have very high blood sugar without a high A1c, in cases of quick onset diabetes. My mother (an MD) says she has seen patients in DKA whose A1cs were below 6%- although everybody does consider DKA diagnostic of diabetes (DKA is defined as acidosis- meaning venous pH < 7.3 with blood sugar above 200).

Although all of the common definitions of diabetes call it chronic, a person does not have to have a history of high blood sugar to be called diabetic- newborns can be diagnosed with diabetes.

Much of the controversy over borderline diabetes has been settled in recent years by calling people who have blood sugar and A1c levels that may or may not be problematic "pre-diabetic". Despite the term, people with pre-diabetes sometimes do develop ill effects of chronic hyperglycemia.

Sources: Remission

I think the most interesting fact in here is that the oral glucose tolerance test was developed in 1917.

Glycosuria

2011-11-01T19:51:00.004-05:00

The American Heritage Dictionary has an entry under diabetes, under diabetes mellitus, and under diabetes insipidus.
It defines di a be tes as Any of several metabolic disorders marked by excessive discharge of urine an persistent thirst, especially one of the two types of diabetes mellitus.
It provides a word history for diabetes, which I won't give here (you can look it up) but notes in the history that the first use of the word diabete in English was in a medical text in 1425.

The dictionary does not give entirely correct definitions of diabetes insipidus (where the extra peeing is because the body doesn't concentrate the pee correctly), and I think it's a bit off the mark with its definition of diabetes mellitus, especially it's characterization of type 2 as necessarily mild. I'll share that definition anyways:
diabetes mel li tus1. A severe, chronic form of diabetes caused by insufficient production of insulin and resulting in abnormal metabolism of carbohydrates, fats, and proteins. The disease, which typically appears in childhood or adolescence, is characterized by increased sugar levels in the blood and urine, excessive thirst, frequent urination, acidosis, and wasting. Also called insulin-dependent diabetes, type 1 diabetes.2. A mild form of diabetes that typically appears first in adulthood and is exacerbated by obesity and an inactive lifestyle. This disease often has no symptoms, is usually diagnosed by tests that indicate glucose intolerance, and is treated with changes in diet and an exercise regimen. Also called non-insulin dependent diabetes, type 2 diabetes. From New Latin diabetes mellitus: Latin diabetes + Latin mellitus, honey sweet.

I think my dictionary kind of jumps the gun by declining to say what makes a thing diabetes to begin with. Yes, yes- it is a metabolic disorder characterized by sweet pee. Great. But as the definition of type 2 hints at, you may have high blood sugar without having pee in your sugar. Rarely, you may even have sugar in your pee without having diabetes.

Which makes it time for another definition:
gly co su ri a Excess sugar in the urine, often associated with diabetes mellitus.

Fact: Glycosuria causes some of the most easily early and classic signs of untreate diabetes and was historically its hallmark.

Coming next: delineating diabetes

--------------------------------

And on another topic- a sensor of mine failed yesterday morning (well in the night- I woke up to a failed sensor) on day four, so I called Dexcom to have it replaced, and for the first time I got asked if I'd been wearing it on the abdomen (the only approved spot). As it happens, I was not (the first failed one that I asked them to replace that wasn't on the abdomen) and I said so. They are replacing it anyways.

D'You Want to Be Profiled?

2011-10-31T19:09:00.002-05:00

Last year in my month of diabetes posts, I profiled some of the lesser known well known diabetics- Jackie Robinson (as well as his brothers Mack and Edgar), Ann Rice , Sonia Sotomayer and Leonard Thompson.

This year I would like to profile another few interesting diabetics. If you are on insulin and would like to be profiled and you have some interesting accomplishments (which most people do) then let me know.

What's Luck Got To Do With It?

2011-10-25T19:18:00.003-05:00

Towards the beginning of July 2011, a miracle happened. My blood sugar went below 200... and it stayed below 200 for FIVE DAYS. It was the first time since 2008 that I had stayed below 200 for more than one day. I had previously stayed under 200 on less than five days in 2011. I had averaged less than one day per month in which I'd stayed under 200 for all of my months I'd been monitoring my blood sugar.
And the thing was, I wasn't doing anything any differently than I'd been doing it for months.
I had an endo visit with an A1c in June 2011. My A1c then was 7.0%. About a week later, my blood sugar mysteriously got much more stable and easy to control. Although I certainly see highs and lows (some of them very high and very low), and especially at night, often my blood sugar has been stable. It is amazing. I have no idea why it is happening. It takes days off (the last three have been bouncy) but has been back to stability enough that when the line seems straight, I trust it to stay straight while I (for instance) change my sensor. And my A1c last week was 6.1%. If this keeps up, my next A1c might easily be under 6%.

When I talked to my endo and told him that my blood sugar was much more stable- that I now often see straight lines on my Dexcom, some for as long as TWELVE HOURS!, he asked me if it was because I had figured stuff out, if my long experience has been paying off. The answer is no, or at least, not really- because my blood sugar is still, without a doubt, willing to go very high if I eat out of proportion to the insulin I take, an it sometimes plunges for no reason and would do worse if I didn't react promptly- but overall, the answer is no.

So I've been thinking about the variation in my blood sugar control over the past five years. My A1c hasn't actually varied by a lot- from 6.1 at its lowest to 7.2 at its highest- but it has varied. The question in my mind is: how much of that variability has been due to the variability in the intensity of my diabetes management?

It very clearly has mattered whether I do something v nothing- a missed meal shot means a blood sugar of over 400 usually, and my A1c at diagnosis was over 16%. And there was one A1c rise that happened when I was guessing at all of my carb counts (that's the 7.0 in March 2008). And my A1c did fall right when I went on the Dexcom.
But my A1c rose when I went on the Guardian, and the recent drop in my A1c had nothing to do with my efforts, and the facts of my diabetes itself have nothing to do with my efforts.

Without my efforts, the A1c of 6.1 would be impossible. And the fact that my A1c has not been back up to my pre-dx levels, I take credit for. If I was lax about taking shots, I would have regain an A1c of 16% if I didn't die first. But the difference between my A1c of 6.1 and 7.2 does not reflect any difference in my effort, and I don't think it reflects a difference in the insulins I've used or my blood sugar monitoring. It just is.

And that is why I am more motivated by reading about diabetes in the abstract than my own meter. Diabetes facts to honor diabetes month to start on Tuesday.

Update that should to be triumphant

2011-10-22T20:09:00.003-05:00

I got a new Dexcom system- I'm happy to say they included a box of sensors with it. Unfortunately, the down button is sluggish, but otherwise it is working well.

I had an endo visit on Wednesday. My A1c is 6.1%. They've moved the upper limit of normal down to 5.6% (guidelines in the past few years have decided that upper 5s are pre-diabetic). Here's a graph of my A1c history:

My weight came in at 100 lb exactly, which is higher than I've seen it in a while (that's a good thing). I got a prescription for a higher dose of Regular, which will let me go off of the Novolog. My pulse was 80 (probably the excitement of the visit) and my blood pressure was was 107/80.
The A1c is like I said above, 6.1%. That's the lowest I've ever seen it although to be honest there was a little part of me that was hoping for lower.
The endo must have forgotten to tell me my blood sugar, 'cause he said that would be in the blood draw, and I did a check right then to compare. He drew for blood chemistries and they were mostly normal- normal creatinine, BUN, nitrogen, potassium, sodium, hemoglobin, ast, alt, bilirubin.
My cholesterol level were on the low side- they always are. The total cholesterol was 103, LDL was 52 and HDL was 41. I'm not sure if I should be concerned about the HDL, but my feeling is that I'm already active, a nonsmoker, and skinny, and my blood sugar is as good as I can get it so there's not much more I can do.
My serum calcium level is slightly elevated: 10.5 with a normal range of 8.7 to 10.2. I told the endo I thought this might be the case and he pooh-poohed me and now that he's saying not to worry about it I'm not reassured. I feel reasonably certain that, in combination with the elevated prolactin and vitamin D levels from May, this is evidence of disease. Probably sarcoidosis. From what reading I've done, it doesn't seem to me that a serum calcium level of 10.5 in a 23 year old man (22 at the time of the blood draw... ;-)) is at all normal.

So even though I feel like the 6.1 should be something to celebrate, especially since I'm feeling pretty good physically, I'm really pretty bummed about the calcium level (and I have a conflicting urge for and against saying "TOLD YOU SO" to the endo).

Dexcom Death Knell- A Story With Picture

2011-10-10T00:02:00.007-05:00

I was sitting at my computer last night, when all of a sudden my Dexcom made a loud short high BEEP sound. I picked it up and pressed the buttons- no response.

I put it down, saddened. A couple of minutes later, the Dexcom produced two long very loud, low beeps, and shook as long as it beeped. It initialized and turned on.

It allowed me to look at data for a few minutes

and then went to the shrill beep, the blank screen, and a couple of minutes later, initialized again.

I got the webcam set up in the expectation that this would happen again, but when the third five minute period went by, I instead got a shrill beep and then:

It would allow me to turn it on to view the error code, and that was all. I decided to hit the reset button to see what would happen. The reset button is on the back of the dexcom and you can reach it by inserting a stiff thin wire... or a needle.

It beeped when I hit the button in back with the needle, but other than that there was no immediate result. However, after a minute it initialized... but then went straight to the error screen:

After repeating this a couple of times, I gave up.

I tried it again in the morning, and this time, after initializing, it gave readings for about twenty minutes before showing the error screen briefly, and then became totally nonresponsive. I can't get it to turn on, to beep.... nothing.
I called in to order Dex The Fourth this morning.

This Dexcom died very much in a way similar to my first Dexcom, except that that one did the whole initializing, working for a while, then spontaneously initializing, for a week or two before dying.

2011-10-09T20:25:00.003-05:00

I got ready for a rough Yom Kippur fast because all of my fasts in the previous year had been rough. There was Yom Kippur 2010, in which I developed very large urine ketones and wasn't sure what I should do because it had never happened before. There was T'isha B'Av, where my blood sugar behaved itself but my stomach didn't and the nausea persisted for two weeks post-fast. There was the nonreligious personal fast of June 2nd in which I drank water but developed large ketones anyways. There was Ta'anis Ester, on which really high blood sugar forced me to correct and the correction brought me low and ended my fast in under six hours. And on the fast just the week before Yom Kippur, my stomach cramped badly enough that I gave it up and ate before it could get worse.

So, the night of Yom Kippur, I dropped the Lantus dose from 10 units to 6 units. I stayed home to minimize exertion the day of the fast. I corrected conservatively for highs but nonetheless ended up taking four correction shots before I went to sleep for the night. I woke up with a blood sugar of roughly 170 in the morning. I bounced a little bit after waking up, and then spent the next six hours with Dexcom readings in an almost perfect straight line at 160. Because I was feeling so well with only an hour and a half left of the fast, I checked my blood sugar; the meter said 148 to the Dexcom's 161. I walked to the synagogue (about 1 and 3/4 miles) with no discernible change in the line.
Yom Kippur was the easiest fast I've had in the past thirteen months.

Unfortunately, I forgot to prebolus before breaking the fast (I mean, I injected just as I started eating) and I spike to the 290s before coming down. I took nine units that night, which kept me right on the edge of low, and spiked very dramatically when I ate a small roll for breakfast this morning. In fact, you can see me coming down from that spike (keep in mind I was 70 half an hour before the beginning of this 24 hour graph) and having a roller coaster-y day.

I am posting this Dexcom graph because, on diabetes art day a month ago, somebody put a picture entitled glucoaster, a word that I assume means to have blood sugars very high and very low in close proximity, so that he graph looks like a roller coaster. But the graph in the picture was a dream! Yeah, it went up and down- but not very high or very low. I would like to show you something a little closer to a real coaster (though not my most dramatic works, I'm afraid). I'm also posting this sort of as a response to Reyna's comment on my last post, about how stable my blood sugar looked. My blood sugar is a lot more stable in the past year than I've been accustomed to. But I don't have a typical day. And there was a day last week in which I spent more than 10 hours below 60, a lot of that time below 50- stable, yes, but not the good kind. My A1cs in the last five years have ranged from 6.1 to 7.2 and they are not accomplished by any small amount of effort or tweaking.
I do not experience some of the challenges that other D folks do- I don't really have dramatic exercise drops, for instance, and I usually escape mealtime spikes. But I very rarely spend a night in range (in range meaning 60 to 180) and I see both 30s and 300s on a regular basis. Anyways, here's today:

Forgive Me

2011-10-07T14:13:00.003-05:00

Well, if I'm not supposed to write about... that... today, then there's another obvious thing to write about because today is erev Yom Kippur. I guess that Day of Atonement Eve in English, but that really doesn't sound the same to my ears. I've decided to spend the day at home praying this year to maximize my odds of a successful fast. I hope that's how it works out.

Anyways, one of the traditional things we Jews do at this time of year (well, actually, I'm a bit late- probably should have done this a couple weeks ago) is to try and find out if we've been offending anybody, if we have anything to apologize for (if?), and then to apologize. So, uh... it seems likely that I've offended somebody. I'm sorry. If there's anything I've been saying that's been secretly bugging you all year, let me know. You can leave a comment. You can even send me an email. For the next few weeks I will check email at twerpchicago at hotmail dot com (not my regular email address).

To all the Jews reading this, I hope you have a meaningful Yom Kippur, an easy fast, and a good year.

Dexcom Graph Interpretation

2011-10-04T22:00:00.002-05:00

It's been so long since I published a post with a picture or video of me, I figure none of my current readers were reading the blog then. So, here I am. I wanted to show how I'm wearing the sensor in a more forward part of my arm than usual. I also wanted to show why; that the backs of my arm are all red and bumpy, but the sensitivity on the webcam was frustrating me so I didn't. I guess it's not that bad but every time I ask my parents where to put a new sensor they let me know that the part of my arm that's hard to see still looks really irritated. But this location is feeling fine so far, despite being a place where I generally wouldn't even do a shot on account of it is not exactly fatty.
Anyway. I also wanted to illustrate how the Dexcom graph looks. The current sensor was inserted pretty close to 24 hours before the picture was taken. So you can see a little area where there's no data in the warm up period. You can see the overnight data, which doesn't make the most perfect of lines- the trace is not really good at the beginning. Those little horns on the top of the mountain blood sugar at the beginning are probably the Dex's imagination. When I got up at 6 AM, the Dexcom read 226 and my accu-chek aviva said 202, which is in the ballpark and not too shabby. The trace for the rest of the day is much better with no weird shapes or sudden bumps. I next tested my blood sugar just over twelve hours later, when the Dexcom had already been telling me that I was low for close to an hour and I was a little suspicious. Dexcom said 57; my accu-chek aviva said 52. Once again, about 10% off.
This graph is interesting for a third reason. When I woke up in the morning with a high blood sugar, I thought maybe my Lantus dose was too low. But a review of the graph suggested to me that that hadn't been the problem. Because right around 1 AM, when I was asleep (I went to sleep within half an hour of the initial calibration), there's a low, and then within that hour, there's a rise in my blood sugar of about 150 mg/dl. That may indicate a rebound (that fabled beast which some claim is only a story) or it could be the last of my supper or something; in any case, it's not basal drift. If I had no Lantus whatsoever on board, my blood sugar wouldn't rise that quickly (if I have no Lantus at all for the night, my blood sugar rises about 50 mg/dl/hr). So I didn't raise the Lantus dose tonight- thank you, Dexcom.

By the way, in the picture I'm wearing a purple t-shirt that says BYC for Broadway Youth Center, which is one of the only spaces for queer youth in Chicago. It particularly caters to street youth, and offers stuff like showers and toiletries as well as a drop in center and programs. I've been going there for six years. However, almost nobody has seen me in this shirt because I almost always wear long sleeves in public.

2011-10-03T19:47:00.002-05:00

In my first year on the Dexcom, I wore about fifteen sensors on my arms, exactly four on my legs, about ten on my stomach, and only two on my butt. The two I'd worn on my butt weren't stellar in terms of performance or longevity, but they did both last a week, and I figured I'd give the location another two tries.
Those two tries were my most recent two sensors. The first one was, from the get go, not so great; it kept being off and having ???s. It also started hurting after the third day. But it got to the end of the week still working, not being quite off enough to cause errors, and since I was out and didn't want to change sensors, I restarted it. It went to ??? within a few hours and I pulled it after 8 days of wear. Oddly enough, I had a brownish-purple bruise under the plastic part of the sensor.
The most recent one worked well from the beginning. It sometimes overstated or understated a low or high but wasn't wrong about whether I was high or low, had no ??? episodes, and didn't hurt, except when I caught it on door knobs (my butt is at door knob height, apparently). It was a no-brainer to try to restart it today when it hit the one week mark, but it failed to restart; the initial calibration caused a SENSOR ERROR 1 and it didn't change its mind about that even after six hours, so I pulled it. It's not the first sensor that seemed to have been working well that wouldn't restart.
My general feeling about sensors on my butt is that they are less likely to work well than sensors on my arm or abdomen but are probably worthwhile just for the sake of site rotation. Certainly, I don't mind moving the Lantus shots to my abdomen while wearing the sensors on my butt.

But thinking about the last few sensors has made me wonder about how to rate sensors on quality instead of longevity. Minimed's software uploads allowed a really easy comparison so you could see how the sensors were doing in terms of accuracy. The closest Dexcom comes to offering a quality evaluation of itself is to show how many data points I got on a given day and while that's certainly interesting, it's not enough to show quality, since a data point could be missing for many reasons other than ??? or sensor error, and a data point that's present doesn't prove it was any good.

This may also be an opportune time to point out, for those of you reading this through a feed, that I have some about me pages at the top of this blog. I had three and have just added a fourth, about the Dexcom sensors.

Hyperglycemia Sensitivity

2011-09-26T22:55:00.003-05:00

I woke up around 2 am, felt fine, went back to sleep without checking bg (BIG OOPS). I woke up again at 4:15 am. My mouth was very dry and my stomach hurt bad. My blood sugar was 275 mg/dl. I decided to take slightly more insulin than I thought I'd need for a correction, on the theory that it'd still take hours to come down, this would speed it up, and then I could have soymilk (I was thirsty- soymilk was on my mind). I drank three cups of water, throwing up a bit after the second cup. I then tried going back to sleep, but the pain in my stomach made it difficult. I was still awake at 5 AM. At this point, my bg was down to 196, and I was feeling much better. I fell asleep. By the time I woke up, my blood sugar was below 40 (tested after I treated, the meter read 36 mg/dl).

One thing I've been noticing is that I'm having more episodes of stomach pain while my blood sugar is high, and they seem to go away as I come down into range. This is particularly true when I wake up high. I think the highs are causing the pain and not the other way around.

This was making me think about something that anybody who spends much time reading the writings of adult type 1s online will notice; that while most type 1s have minimal symptoms while high - often nothing at all but even when there are symptoms, nothing more than thirst, dehydration, dry mouth, maybe blurry vision- others feel really bad- whether it's just plain exhaustion or vomiting. I'm talking about blood sugars in the 140 to 340 range. I often wonder what makes the difference between the groups. In my case, I suspect that the pancreatitis gets aggravated by highs, since I didn't used to have this issue. In some cases, where the person says they feel bad when they're outside a range that's tighter than most nondiabetics have, I figure the person is attributing to blood sugar something that's not really blood sugar related. Some of it, I suspect, may be an unconscious triggering of nausea from past association. But I really don't know and it seems important. I don't know if there's a name for it.

Insurance's Money

2011-09-23T13:49:00.002-05:00

My Dexcom system is a month out of its one year warranty.

So when a Dexcom sales person called and asked me if I needed new sensors (I don't, I have three unopened ones), I told her that I wanted to know what would happen if my current Dexcom broke- would I need to buy the whole new system, would we need to go through the whole process with insurance again, what?

So she said she'd have somebody do an investigation of benefits and call me back. The next day I got home from work to find a message on my answering machine that said good news, I was covered at 100%, and she'd gotten all the paper work, and my new system was ready to ship.

Only problem? I don't need a new system now. And I'm not interested in wasting money- not mine, not my insurance company's. So this morning I spent nine and a half minutes (seemed longer than it looks typed) arguing with the sales person at Dexcom, who was trying to convince me that the system was free to me, that it would be worth it to insurance for me to have a backup so as not to go a day without a system because I would be hospitalized without it (yeah, fucking, right- not). She said I couldn't know if my transmitter was failing. She also tried to convince me it was worth having my insurance company pay for a new system now because I would get a new case for the Dexcom. She emailed me a picture. It's a nice case. It also would cost a mere ten dollars if I want to buy it, whereas insurance would be paying in the neighborhood of a thousand dollars.
In the end, I managed to insist that I don't need a new system now and that I'll call when I do (or in December, so I don't have to do the process all over again).

It got me thinking about something, which I don't believe I've written directly about, but which is often on my mind. I believe in spending the insurance company's money as if it were my own, and I don't waste my own money, so I'm not going to waste theirs. If I wouldn't be willing to buy a particular thing for a person in my position if the money was mine, I'm not going to ask insurance to pay for it for me. I think that's the most moral position to take.

My best friend doesn't share my morals (frankly, nobody shares all of my moral values). He argues that insurance companies are for-profit companies, trying to squeeze me for my last dollar, and that they wouldn't hesitate to cheat me- so I should cheat back. Sometimes, particularly when I was being denied CGMS coverage entirely on the basis of my age, this made some sense to me. But I've never believed that I should lie when I am talking to a liar, and I don't see a value in cheating a cheater. I prize my honesty, what I've got of it.
Secondarily, the way I see it, some of the costs of whatever I use will trickle down to me, sooner or later. If insuring me costs more, perhaps I will pay more for insurance later on- and if I don't, well, the cost of insurance in general will have to be higher if people buy more medical things with it.

In real life, this has translated to being part of why I didn't use a pump four and a half years ago, although at this point I see more reasons. It's a part of why regular is so appealing to me. It's also something that sets me a bit apart from a lot of the diabetes community- because I have never ever seen this desire to save insurance money mentioned. Not once.

Invisible Illness Meme

2011-09-16T10:17:00.002-05:00

1. The illness I live with is: ooh, tough one. I'm a diabetic. But I also live with chronic abdominal pain, dementia, and other stuff.
2. I was diagnosed with it in the year: I was diagnosed with diabetes in 2006. I was diagnosed with gallstones in 2008. I was diagnosed with thyroiditis in 2008.
3. But I had symptoms since: I started having symptoms of diabetes in the 2001-2002 schoolyear. I don't remember which year it was. I started having acute abdominal pain in early 1999. I first showed signs of autism within a month or so of my birth, in 1988. I was first tested because of signs of thyroid disease in 1998.
4. The biggest adjustment I've had to make is: For diabetes, dealing with electronics on the sabbath, staying inside the boundries on the sabbath. For the memory problems, writing everything down because I don't remember them, accepting that I don't remember things. For the pain... learning to live with pain, I guess.
5. Most people assume: That how I'm functioning today is a good indication of how I will function tomorrow.
6. The hardest part about mornings are: Most of my mornings are not hard.
7. My favorite medical TV show is: I am terrified of TVs and have never watched a medical show on TV.
8. A gadget I couldn't live without is: I could survive without gadgets, I think. Unless a needle counts as a gadget.
9. The hardest part about nights are: losing sleep to night terrors, hypoglycemia, and hyperglycemia.
10. Each day I take _ pills & vitamins: I take no pills and no vitamins. I take 2-12 shots of insulin, 0-1 shots of testosterone, 0-1 new sensors, 2-12 blood sugar checks, and okay, some glucose.
11. Regarding alternative treatments: The placebo effect is powerful.
12. If I had to choose between an invisible illness or visible I would choose: When my differences are too invisible, and people tell me I don't look like I have them, I seethe. And when I tell people, and they've already guessed, I also seethe. I wish I could come out when I want to and have people always believe me... and diabetes is the only one of my issues for which that usually is how it happens.
13. Regarding working and career: My illnesses make it hard to plan, and my memory and energy problems have made it hard, too. I had real difficulties student teaching because I got overwhelmed, my visual processing stopped working, and I couldn't see anything at all for minutes at a time during class. But I'm currently working numerous part time jobs and have high hopes for a career.
14. People would be surprised to know: that I don't really mind this.
15. The hardest thing to accept about my new reality has been: that I have no memory of the "old" reality. (Quote from Kerri but true for me too)
16. Something I never thought I could do with my illness that I did was: I never thought it would certainly stop me from anything.
17. The commercials about my illness: usually are for things I don't need.
18. Something I really miss doing since I was diagnosed is: Taking long sabbath walks.
19. It was really hard to have to give up: My desire for total self sufficiency.
20. A new hobby I have taken up since my diagnosis is: Searching pubmed.
21. If I could have one day of feeling normal again I would: I think I do have days of feeling normal, lots of them.
22. My illness has taught me: To let go.
23. One thing people say that gets under my skin is: "I could never do that." Like I have a choice! Like I should choose to die! I also hate, "I know how you feel." No, you don't. Not even if you had all of my diagnoses, you wouldn't.
24. But I love it when people: Ask good questions.
25. My favorite motto, scripture, quote that gets me through tough times is: Psalm 23, verse 4: Gam ki elech, b'gai szalmavet, lo eera ra, ki ata imadi / And though I pass in the valley of death's shade, I will not fear bad, for you are with me.
26. When someone is diagnosed I'd like to tell them: You got questions, I got pubmed.
27. Something that has surprised me about living with an illness is: That it's really not a one-per-customer kind of deal. I kind of thought once I had diabetes, diabetes was gonna be the main illness in my life, for life. Not so.
28. The nicest thing someone did for me when I wasn't feeling well was: Visit me in the hospital.
29. I'm involved with Invisible Illness Week because: I wanted to blog something and Kerri of sixuntilme posted this meme
30. The fact that you read this list makes me feel: A little exposed.

A Year of Sensors

2011-09-11T12:17:00.003-05:00

Well, in one year on the Dexcom, I started 32 sensors. I just finished that 32nd one today. I think the summer sensors were not as hardy- a lot more err1s recently. The most recent one didn't quite fail but after working almost perfectly for two weeks, the very last calibration was really off- the Dexcom said something like 140 and the meter said 281 (295 on recheck). So I pulled it. Sensor number 33 is off to a bad start- it's been in for about two and a half hours but has been showing ??? for the last hour.
In one year, I had two sensors actually replaced, because they never worked. Both were placed in my right abdomen, were I've had surgery, although I did my best to stay away from the scars. The first one I waited about 12 hours for with no luck; the second one I gave up on after only four hours because it was the day I was going to leave for a weeklong trip and I wanted to leave with a good sensor.
The receivers I've had replaced twice, meaning I'm on the third one. One had to be replaced because it totally stopped working; the other simply stopped beeping. Interestingly enough, none of the three have had accurate internal clocks. The first two simply kept losing time- I'd set them to the right time but they'd be off by a minute after a week or so, and in a month they'd be off by three minutes. The current one seems to both lose and gain a minute here and there.
I'm still on the original transmitter. I think it transmits a bit less further than it did six months ago, but I'm not really sure.

Anyway, here's how long I wore each sensor:

Sensor 1 left arm, inserted Sept 1 removed Sept 17 due to itchiness
Sensor 2 left abdomen, inserted Sept 19 removed Oct 2 removed because it failed
Sensor 3- left leg, inserted Oct 2, ripped out Oct 4
Sensor 4- left leg, inserted Oct 4, failed Oct 14
Sensor 5- left arm, inserted Oct 14 removed Nov 4
Sensor 6- left abdomen, inserted Nov 4 removed Nov 20
Sensor 7- right leg, inserted Nov 20 ripped out Nov 22
Sensor 8- right arm inserted Nov 23 removed Dec 10 due to itchiness
Sensor 9- right leg, inserted Dec 10 failed Dec 15
Sensor 10- inserted Dec 15, removed Jan 8th due to itchiness
Sensor 11- inserted on Jan 8th, removed Jan 9th because it didn't work at all
Sensor 12- right arm, inserted Jan 10th removed Jan 26th (itchy and ???)
Sensor 13- left arm, inserted Jan 26, removed Feb 2
Sensor 14- left abdomen, inserted Feb 2, took out Feb 13
Sensor 15- right arm, inserted on Feb 13, pulled Feb 22- the Dexcom receiver broke while I was wearing this sensor and I had to take the transmitter off while wearing the sensor in order to read the number on in, and the adhesive was just not sticking well- this was not a good sensor experience
Sensor 16- left arm, inserted on Feb 22, pulled Mar 5
Sensor 17- left upper abdomen, started on Mar 5, pulled on Mar 19
Sensor 18- right arm, started on Mar 20, pulled on the 31st due to itchiness
Sensor 19- left arm, started on Mar 31st, pulled April 21st at the three week mark- didn't think it was worth a restart because of ??? episodes a false low the previous night
Sensor 20- right arm, started on April 21, pulled it May 6 because of poor function
Sensor 21- left hip, started on May 8, pulled in May 23 due to itchiness.
Sensor 22- right hip, started May 26, pulled June 2 due to error 1.
Sensor 23- right arm, started June 3, pulled June 10 due to err 1 on restart.
Sensor 24- right arm?, started June 10, pulled June 19 due to itchiness and inaccuracy.
Sensor 25- right abdomen, started June 19 pulled July 3
Sensor 26- left abdomen, started July 3 pulled July 17 because the adhesive wasn't holding and it was itchy
Sensor 27- left arm, started July 17, pulled July 26
Sensor 28- right arm? started July 26 pulled August 7
Sensor 29- right abdomen, started August 7, didn't work at all, pulled August 7
Sensor 30- right abdomen, started August 7, pulled August 17 due to Err 1
Sensor 31- left abdomen, started August 17, pulled August 28
Sensor 32- left arm, started August 28, pulled Sept 11 due to itchiness and sudden inaccuracy

Days per sensor:
arm sites: 16, 21, 17, 24, 16, 7, 9, 11, 11, 21, 15, 7, 9, 9, 12, 14
abdomen sites: 13, 16, 1, 11, 14, 14, 14, 0, 10, 11
leg sites: 2, 10, 2, 5
hip sites: 15, 7

Why I pulled them:
Itchiness (usually combined with other reasons) - 10
Failed Sensor - 8 (Includes 2 that never worked, one that worked but failed in under a week, and five that failed after a week)
I didn't pull it, it pulled itself- 2 (both leg sites)
An old sensor doing worse that had not failed -6
It was just an old sensor and I was afraid to wear it past x days- 1
Did not write down reason- 8

Finished: One Vial Regular

2011-09-09T10:08:00.003-05:00

I woke up a couple of weeks ago with a Dexcom reading of 362, and my Accu Chek aviva concurred with a 361. Since I clearly had some time to wait before my blood sugar would be in a breakfast worthy state, I decided to log my blood sugar on the hour, as well as when and how much carbs I ate, after taking my breakfast shot of regular. I'd been wanting to figure out exactly how potent Regular was, by itself and in comparison to Novolog.

I constructed a formula for retroactively finding my insulin sensitivity/carb ratio for a particular shot.
For the times that I did this, I computed my retroactive insulin to carb ratio like this: I took the blood sugar reading right when I did the shot (I counted a Dexcom reading as a blood sugar reading, usually). I took the blood sugar reading exactly four hours later. I counted all of the carbs eaten in those four hours, including hypo treatments. I assumed a BCR of 5.
Then my retroactive I:C was as follows- ((Starting BG - Ending BG)/5 + carbs)/units injected.

I did not include any times if I had to give another shot within the four hour period, if I had eaten in the hour before the shot, or taken another shot in the four hours prior or if I just didn't document all the stuff above.

I ended up doing this computation for eight breakfasts with regular. The retroactive four hour I:Cs were: 6.06, 6.5, 6.63, 7.7, 8.5, 6.0, 6.375, and 6.5.
This is much more consistent than expected and the standard deviation is small enough that I should be able to compare this to Novolog fairly confidently. The consistency suggests to me that I picked the right BCR.

I only did this computation for three lunches, partly because I often don't take insulin for lunch or don't eat lunch. The retroactive I:Cs for those were 16.4, 11, and 22. Clearly all higher than breakfast, but that's about all I can say.

Dinners I almost never did this for because I tend to eat foods for dinner where I can't get a good carb count but I suspect the numbers would have been very variable. The only dinner I did do this for, I got a 14.4.

I sort of kept an eye on how this worked for corrections and my feeling is that for morning corrections, the morning ISF of 30 (which is the same as an I:C of 6 if my BCR of 5 is correct) worked well. For the rest of the day I used an ISF of 75 (which translates to a I:C of 15) and that was usually a bit stronger than I needed, but sometimes in the evenings it wasn't enough.

Yesterday the vial of Regular ran out and I'm back to Novolog. I intend to collect data on the Novolog too, to see if it works at the same strength as Regular. I suspect that the Novolog will prove to be slightly stronger. I think next time I go back to Regular (which I plan to do in October) I'm going to try to look at the 5 hour data as well, but that will be harder because spacing shots that far apart and also it introduces more of the basal variability.

P.S. After posting, I decided this was not very easy to understand. So let me give an example.
At 8 AM on Tuesday morning, my blood sugar was 138. I took 12 units of Regular, and ate 38 grams of carbohydrate. At 9 AM my blood sugar was 125. At 10 AM my blood sugar was 117 and I ate another 38 grams of carbohydrate. At 11 AM my blood sugar was 117 again and at noon my blood sugar was 103.
In a four hour period, my blood sugar fell 35 mg/dl, and I ate 76 grams of carbohydrate. To have kept my blood sugar totally stable, I would have needed to eat enough to stop the 35 mg/dl fall. I assume one gram of carbohydrate raises my blood sugar by 5 mg/dl, so I would have needed to eat 7 more grams. 76+7= 83. I would have needed to eat 83 grams of carbohydrate to have stayed stable with the 12 units of Regular I took. Pretending that basal issues don't exist, that means that to stay stable, I needed 12 units per 83 carbs, which is 1 unit for every 6.916 grams of carbohydrate.
So my retroactive I:C for that four hour period would have been 6.916.
I could also calculate that as a retroactive insulin sensitivity factor just by multiplying by 5, since I'm assuming one gram of carbohydrate raises me 5 mg/dl. Then I would assume one unit would have lowered my blood sugar by 34.583 mg/dl that morning.

Looking Back, Looking Forward

2011-09-01T23:10:00.004-05:00

On this day in 2006, I was diagnosed with diabetes, and I received exogenous insulin for the first time.
In 2007, 2008, 2009, and 2010, on this day, I remembered and commemorated that day. I felt the feelings that I had felt that first day, and I knew how far I had come, and how far I hadn't.

This year is different. This year, I don't remember being diagnosed with diabetes. I don't remember what it felt like to be in DKA. I don't remember what it felt like to have an IV in each arm. I don't remember the thirst. I don't remember the beeps. I don't remember how I felt.

That's not to say that I can't tell you how it felt or what it was like- I can. I know it like a favorite poem that I've performed a hundred times. But I don't know it like it happened to me.

Some of this, I think, is just normal fading of memory. Some of it is not. Between roughly July 2006 and July 2007, I lost the vividness of all of my memories. I lost the entirety of a lot of my memories. I lost the ability to bring up the knowledge that I wanted at will, which destroyed a lot of my function. I lost the ability to orient myself and was continually, perpetually lost. Then I started recovering. I recovered the ability to play chess. I improved a lot in my ability to recall things. I improved in my perception of time. My spelling recovered, and I was able to read books again. I wasn't as tired.

Today, I remember yesterday, vividly. I remember bits and pieces of things from the past fifteen months or so, some things that stand out. Everything else that I remember is just knowledge- I remember it like I read it, like it happened to somebody on TV. But boy, I do know a lot!

On this day in 2010, I started on the Dexcom system. I hope tomorrow to set it up with an amplifier. The Dexcom may or may not have really improved my over all blood sugar control.
In my 1st year on insulin, my A1cs were 16+%, 6.5%, 6.3%, and 6.3%
In my 2nd year on insulin, my A1cs were 6.4%, 7.0%, and 6.3%
In my 3rd year on insulin, my A1cs were 6.6%, 6.9%, 7.2%, and 6.4% (the rise occurred on the Guardian- I also had my gallbladder removed and had thyroiditis in this year).
In my 4th year on insulin, my A1cs were 7.1%, 7.0%, 7.0% and 6.6% (I had acute pancreatitis in this year- also had tendinitis that prevented me from walking).
In my 5th year on insulin, my A1cs were 6.2%, 6.6% and 7.0% (I also had a 6.1% fingerstick A1c towards the beginning of the year- I had less severe abdominal issues in this year).

This summer, my blood sugar stabilized a lot, for no reason I can be certain of, and I expect my next A1c to be below 6.5 for sure, maybe a lot below 6.5.

Some other things I did differently this year, or that I did for the first time in my diabetes management, include a new insulin that is only new to me- Regular, using a Bayer A1c, using 4mm pen needles, using the ketodiastix, using a blood ketone meter (NovaMax).

This was a pretty good year for me in terms of medical issues, compared to the past few years. I continue to have stomach problems, but they are not as bad as in past years. I had some testing done but no diagnosis. My weight this year was below 100 pounds the entire year, but it never measured lower than 96 pounds, so that's pretty stable, although the skinniest I've been since September 2006. I had a number of bizarre blood test results (think prolactin, vitamin D), but nothing that required me to do anything. I had no inpatient hospitalizations.

Going into my sixth year on insulin, I am more worried about fasting. I have been dramatically more ketone prone this year. I am less worried about my kidneys- my renal threshhold seems to have gone up sometime between the fall of 2007, when I tested it as being around 155, and now, when it seems to be around 190. I am more concerned about insulin absorption and scarring. I'd like to improve my injection technique.
I am hoping to break into the 5% club (people with A1cs between 5 an 6 percent) but would be reasonably satisfied with a year that sets no new personal records- no A1cs above 7.2%, no lows below 22, no diabetes related hospitalizations.
I am hoping to use the amplifier to wake up in the nights with my highs and lows, especially because waking up above 300 now means that I also wake up ketotic, in pain, and sometimes vomiting.
I am going to continue experimenting with both Novolog and Regular. By the end of the year, I will probably have decided that I like one or the other better. So far, just taking notes to help with my experimenting is improving my understanding of how the insulins work in my body.
I don't know if I will stay on the Dexcom. I think that I will, because my insurance is now covering it, and I don't expect the new minimed sensors to be available in the US anytime soon, and Abbot is officially removing the Navigator from the market. Also, my fingers swell up if I check my blood sugar much.

Today is also diabetes art day. The past few months I've been playing with the idea of characters inside a Dexcom illustrating glucoasters. One such drawing is on this blog a couple months back. But I haven't developed anything I want to post today. Sorry.

And now it's a bit past midnight... five years ago I was in an ambulance being transported from one hospital to another. Tonight I'm sitting in my own living room. Five years ago I was getting my insulin by an IV drip (regular, I think, at about 2u/ hr). Today, I took three only three shots of insulin- 14 units Regular with breakfast, none with lunch, 10 units Regular with supper, and 9 units Lantus. Five years ago, my lowest blood sugar of the day was about 260 mg/dl, after seven hours on insulin. Today, my highest blood sugar was about 260- a brief I-started-breakfast-before-injecting spike.

This past year was true to life- a mixture of healthy and not so much, conscientious and not so much, happy and not so much, peaceful and not so much. May the next year bring much.

A Life of Control - Book Review

2011-07-31T21:54:00.002-05:00

A Life of Control: Stories of Living With Diabetes
by Alan Graber, Anne Brown and Kathleen Wolff
First of all, you've gotta admit that's an awesome title. A life of control, I want that. Second, it's got an awesome cover. The title is inscribed in the screen of a One Touch Ultra (not a mini). Third, it's got a pretty impressive variety of diabetic stories inside, from the blind diabetic running a small store to the marathoner who runs only a half marathon the year she's diagnosed.
But despite all of that, this is not a great book. It is a compilation of stories of people with diabetes with the opinions of the authors interjected here and there, and in their interjections, they mess up the flow of the book, introduce numerous logical inconsistencies, while failing to offer insight or criticisms more sophisticated than someone entirely uneducated about diabetes could come up with.
I would not recommend this book to anybody who doesn't already know that weight control is not crucial to blood sugar control, pump users don't have more severe diabetes, sugar for diabetics is not akin to alcohol for alcoholics, and doctors can be judgmental idiots.
I would recommend this book to people who are secure in their knowledge about diabetes and are merely curious to see a wide range of other diabetics, including some you're unlikely to find online.

Feeding the Insulin

2011-07-29T00:11:00.002-05:00

I was trying to figure out my insulin to carb ratios in order to write them down in an "in case I am unconscious" script, and it got me thinking about why I no longer know or really care about my insulin to carb ratio. My stomach stopped hurting (baruch Hashem! as we say in my community) about a month ago, and since then I've been doing something I haven't done in a loong time. It is what I call feed the insulin, and it is definitely part of why my blood sugar average is down by 20 mg/dl from June.

Here's how a typical breakfast or supper goes for me, if my blood sugar is in the 80 to 180 range before I eat:

Step 1: I take a lotta Novolog (or Regular). Somewhere in the range of 8 to 15 units.

Step 2: I wait 10 to 20 minutes.

Step 3: I eat about forty grams of carbohydrates over the course of about twenty minutes.

Step 4: I wait ten minutes and see what my Dexcom shows my blood sugar as doing or not doing.

Step 5: . If blood sugar is level, I eat more. If blood sugar is falling, I eat lots more If blood sugar is rising or high, I don't eat.

Step 6: About two hours after I took the insulin, I take a look to see if I need more insulin or more food. Usually after breakfast, it's more food, and after supper it's been more insulin.

Tada! For the record, when I do count the carbs, it appears that my breakfast ratio is about 1 unit to 8 grams of carbohydrates. I haven't counted enough suppers lately to have a good idea as to what my ratio is in that department.

Feeding the insulin has generally gotten a bad rap in diabetes history. It's often associated with fixed dose insulin regimens, particularly ones based off of NPH. The most widely touted advantage of the basal bolus regimen is that you don't feed the insulin; the insulin feeds you. But I think feeding the insulin has gotten the short shift.

If I decide how much insulin to take- I say I'm 5 units of hungry or 15 units of hungry- and then watch the monitor to find out how hungry that really is, I get much more stable blood sugars than if I decide I'm 75 carbs worth of hungry and then use yesterday's formula to find out how much insulin that is.
And if it turns out that I'm more than 5 or 15 units of hungry, well, I can inject again.

I continue to have more problems with my overnight blood sugars than my daytime ones. Too bad I don't stay up all night eating.
;-/

2011-07-12T22:25:00.002-05:00

My brother Tree is home for the summer. And, I just realized, he has a Windows laptop! Now, you may be thinking, Jonah is a Windows fan?! but it's not that. It's worse. I'm a Dexcom user. Dexcom only lets you review data (other than the past 24 hours' graph) on the computer (or print outs). And Dexcom software is designed to only run on Windows. And I really wanted to look at my averages.

The good news is, my July average so far is 132, which is a huge drop from my June average which was 158. I had been dreaming that it would be lower, but oh well. It was informative for me to look at the hourly trend chart of the past couple of weeks. My blood sugar is apparently hitting a high at midnight- there's a sharp rise in the hours coming up to midnight- and then it falls until by 6 am I'm typically low. So I think I need to take it easier on the Lantus.

The Regular so far isn't really doing what I meant it to- it seems to be kicking in at roughly the same speed as Novolog and also it's not lasting as long as I hoped. Frankly, it seems a lot like Novolog.I guess it's worth knowing if Regular does act just like Novolog for me, since Regular is cheaper, but it's not what I hoped to find.

I'm already thinking about what to write about when I do November facts this year (if you don't know what I'm talking about, read the archives for November 2010). For sure I want to write about lipodystrophy. I also want to look at trends in complications. If there's anything diabetes fact related you'd like me to write an essay on, let me know between now and halfway through November.

New Shipment of Diabetes Stuff

2011-07-08T17:21:00.007-05:00

When I started getting Accu-Chek aviva test strips, they send me boxes that each had one canister of 50 strips. A few years ago, they switched to sending me boxes that each had two canisters of 50 strips each, the practical difference being that I got half as many code chips. In this shipment, they've gone back to boxes with one canister of fifty strips.

I'm switching from mini pen needles, which are 5mm and 31G, to nano pen needles, which are 4mm and 32G.

As a math teacher, I was really struck and not at all happy to see the major mathematical error on the back of the Nano needles' box. It has a picture comparing a Nano needle to a short needle. The caption says "BD Ultra-Fine Nano is 50% shorter & 8% thinner!" and underneath, written on the pictures of the needles, it says 4mm² an 8mm² on the green one. But the dimension being described is length, not area. The difference is between 4mm and 8mm, not mm². This is a crucial difference.

The opticlick Lantus pen cartridges have been discontinued, so the pharmacy called my doctor and asked for a prescription for a different form of Lantus. I expected to get vials, but to my surprise I got these Solostar disposable pens:

Unfortunately, although I wanted syringes with half unit increment markings, I once again got the ones with whole units. The box with the half unit increment markings is from almost a year ago.

Ordering Insulins

2011-07-03T00:17:00.002-05:00

I've been getting most of my diabetes prescriptions through Prime Mail pharmaceutics but I'm starting to rethink that. It's been a big hassle, dealing with them. They have sent me the wrong stuff or called because they couldn't figure out what I wanted or insisted that my doctor rewrite a prescription or called my parents instead of me and also they haven't changed my sex in their system, I don't know why, so every time they call they want to talk to "Ms. Jonah" and I tell them no can do but you can talk to me, "Mr. Jonah" and they get kind of flustered and ask for my date of birth but they must not be making a note of it because I have to listen to the same thing over and over.

Anyways, on Friday they called a few times. First they called my parents' number but I wasn't there. Next they called my number. They wanted to know something about the credit card. It's my father's credit card, so I went over to my parents' and gave my phone to my mother to deal with that.
They called a little later in the morning to say that the Novolin R prescription (that's Regular, FYI) had been written as a one month prescription and therefore they couldn't fill it, so they wanted me to call my doctor and get a new prescription for a larger amount of Novolin R. I tried unsuccessfully to make the point that the one vial of Novolin R was in fact intended for a three month supply, and that you could tell this from how my doctor wrote the prescription (he wrote Novolin R, one vial, three to six units per day, refills: 2). As six units per day for three months is still less than a thousand units, and since the refills are generally meant to written so that the doctor won't have to rewrite the prescription for a year, I thought it was totally obvious that my doctor meant it to be a three month supply, but apparently not.

So then I hit upon the bright idea of taking the prescription to a local pharmacy. The reason I use prime mail is cost. So I asked them how much it would cost. The website had indicated 17 dollars; the woman on the phone said it would be 20 dollars if it was written as a one month supply, or 46 dollars if written as a two months supply. Keeping this in mind, I went to walgreen's. I had walgreens call Prime Mail and get my prescription. Within a couple of hours (I went out and came back) I had my vial of Novolin R. I paid $17.64 and insurance made up the remaining $51.34. Not too bad!

My parents have been getting a bunch of automated calls for me about my Lantus; apparently the opticlick cartridges are being discontinued, so they want me to take Lantus from vials, and they need a different prescription from the endo, but he hasn't gotten back to them yet so they want me to pester him.

Unfortunately my blood sugar was doing funky things already so it might not have been the best day to introduce the regular but I took three units of regular (combined in a syringe with nine units of Novolog) at supper time. I also dropped that night's lantus dose. I woke up in the morning with a nice blood sugar (88 mg/dl) but the night looks to have been bumpy. I took three units of regular again with my supper a few hours ago. I'm not sure what my bg is doing right now- it looks like it's jerking up and down by itself but maybe it's just my sensor dying.

Stick Figure In a Dexcom, 1

2011-06-26T20:34:00.002-05:00

P.S. Click on it to see a bigger picture, and then you'll still have to look sideways.

2011-06-25T22:54:00.002-05:00

The good news is, the prolactin and calcium are normal now. The vitamin D is low but I refuse to supplement- not when I've had two unexplained high vitamin D levels. My endo says if it was him, he'd try supplementing with the a low dose of vitamin D but I'm not willing to do even that.

My A1c is up to 7.0% which I am not at all happy about even though I'm not surprised. I know in studies on people with diabetes, people often have drops in A1c when something new is added or something is changed- whether it's a pump being added or an insulin changed- and that most of the time, the A1cs go back to what they were after a year or so. I assume that this is because of how much diabetes control is affected by the thought and effort that goes into it, and changing things up both causes us to think more about what we're doing, and motivates us to do what we know we ought to.

Nonetheless, when I got my lowest ever recorded A1cs so soon after starting on the Dexcom, I really thought I would be able to keep those A1cs down. So it's especially disappointing to me to see them go up.
Nonetheless, there are times that the Dexcom really helps. For example, today I didn't measure carbs. I just took a lot of insulin and then ate more when I started getting low. My daytime highest number was 178 (I went over 200 around 11 PM), and I took about 50 units of Novolog today- which at a 1:10 ratio suggests I ate an awful lot of carbohydrates. I'm not really sure what my ratio really is though- I've been sick for three weeks and I've been insulin resistant.

Anyways. Maybe the Regular will help. It's certainly cheaper than the Dex.

Tomorrow I'm going to post a diabetes cartoon I drew. I've been meaning to scan it and upload it for a while but now that I've said I will, I'll have to.

2011-06-22T14:53:00.002-05:00

I went to see my endo because my other doctor thought I should see a specialist. I spent awhile getting stuff together for the visit but somehow I don't feel like it went well because I don't think we really communicated. My endo doesn't know of anything that would cause the blood abnormalities I had and is inclined to dismiss them as a non-issue. I am not similarly inclined. Anyways, I had a blood draw. I'll have an A1c soon, among other things.
And I got my diabetes prescriptions:

BD Pen Needles- the new 4mm ones. 2 per day.

Lantus Cartridges. 10-15 u/day

U100 BD Insulin Syringes w/ultra fine needles 0.3 cc, 8mm, 31G, #270. 3 per day.

Glucagon Emergency Kit (still haven't used one)

Accu Chek Aviva Test strips 4-5 /day (lowered use due to Dexcom)

Novolin R insulin 1 vial (this is new- I wanted to try adding some Regular to my Novolog at supper to see if I could curb the late night highs)

and that's it because I got a Novolog prescription earlier when I was running out, and I have a stockpile of lancets.

ERR 1 on restart

2011-06-10T15:25:00.003-05:00

My last sensor I pulled after an ERR 1 episode.

This sensor performed very well for one week, so of course I tried to restart it. I waited through the two hour warm up period, entered in a bg (196) and it said ERR 1. I entered a second bg anyway (224). Err 1. I waited an hour and a half and entered another bg (117). ERR 1. I hit end sensor, start new sensor. I waited through the start up, then entered two calibrations (88 and 92). It displayed two readings before going to ERR 1.

According to Dexcom, ERR 1 is a calibration error and the correct response is to wait about an hour and then try giving it a new calibration. In the past, I've had a few ERR 1 episodes and all of them cleared up within a few hours. I wish I knew how to predict what would make it clear up. I don't see why a sensor that's performing perfectly for a week would go ERR 1 on restart.

I put together my high prolactin and high vitamin d (1alpha 25OHD 2) level and I think I have sarcoidosis although the doctor hasn't gotten back to me yet.

I'm sick and took the day off of work today, partly because I don't feel good, partly because I might get somebody else sick, and mostly because I sound so awful that I'm sure everybody would blame me if they did get sick. I've been having a hard time getting out full sentences without either speaking in a mickey mouse voice or else not being able to make any sound at all, and at best I sound hoarse. My experience with gender dysphoria makes me feel pretty tolerant of the times when my voice is wonky, but not necessarily tolerant with the times when my voice won't come out at all.

2011-06-07T19:27:00.002-05:00

My newest weird test result is a high vitamin D level- 92 point something at a lab that goes up to 75. And I'm not even supplementing! The doctor left a message but it's too late to get back to her today.

I finally have insurance coverage for my Dexcom sensors, which is great. I got sent an invoice about a week ago that at first I thought was amusing, but the more I look at it, the less amused I am.

To review: if you are buying Dexcom sensors, you will be told the price for a box is 319 dollars per box, unless you are willing to buy at least six boxes in a twelve month period, in which case the price is 289 dollars per box.

On this invoice, it says that the list price is 460 dollars per box, but that my insurance (BCBS-IL) has contracted with Dexcom and received the lower price of $261.52 per box, and that for the two boxes I just got, the price is therefore $523.04 of which I paid $52.30 and insurance is expected to make up the difference.

And, just, I don't get it. Why does Dexcom have a list price of $460? Why contract with my insurance for $261.52 when uninsured patients, who require less paperwork and processing (though probably use the Dexcom less continuously) pay 289 plus shipping and handling?

2011-06-06T18:04:00.002-05:00

On Thursday I walked about ten miles. Took a water bottle, was good with hydration, nary a high blood sugar all day (it did bump up to about 160). I didn't eat much, but... whatever. I got home and tested for urine ketones because they've tended to be running trace a lot of the time in the past nine months or so. The color changed really quickly to moderate, I put the strip down, picked it back up and it was the color of very large ketones. Whoa! So, I took out the Nova Max meter and tested blood ketones and got a result of 0.4, which is the upper end of normal, and is supposed to correspond with negative or maybe trace ketones.
So... if I were to just test blood ketones, I think I'd find normal, normal, normal, ketone levels. But on urine ketone levels, I've seen trace to small ketones the majority of the times I've tested in the past year.
While a negative blood ketone test is somewhat reassuring, the fact of the matter is that even moderate urine ketone levels strongly imply that something is going on. The fact that I developed a high urine ketone load while hydrated and euglycemic (unless you think 160 is ketogenic) makes me wonder if either exercise or lack of calories could be responsible and if it is safe for me to eat small breakfasts and lunches.

I also wonder if the blood ketone meter's demarcation of normal is correct, since I've read other people claiming that they typically have lower blood ketone levels and don't see numbers like 0.4 unless they are sick.

I pulled that second hip sensor when it missed a low, I tried calibrating with the low (bg of 62 vs sg 140 or something like that) and it said Error 1 and didn't recover. I now have a sensor in my arm and it is working beautifully.

Sensor Quandry

2011-06-01T01:11:00.002-05:00

Let's say you're wearing (or a person in your charge is wearing) a sensor and it's not performing well. How do you decide to pull it or leave it in?

I'm wearing a sensor. It's on day 5. It has been showing some really erratic numbers. A few times it's been spot on and mostly the direction of the trends are correct but the magnitude of the trend is not. Also, every time I take a walk it shows me plunging low within 20 minutes, very dramatically proving that it is on body, but in reality my blood sugar doesn't seem to have been low at all. At first I thought it was just warming up and would get better but at this point I'm not so sure.

A small mystery- Prolactin

2011-05-28T23:57:00.003-05:00

I had an appointment with my general practitioner on Tuesday. I was long overdue. My weight came in at 97 lb which at my height is okay but not great, and which is not the highest or lowest weigh in I've had in the past year. We talked for a while, about GI issues mostly but also about testosterone and general chit chat. I gave her a study I printed out, got another prescription for testosterone, had lots of blood drawn.
She called Thursday to say that everything was normal except for my blood sugar, which was 192 (very close to the accu chek which had said 193) and the prolactin. She said she tested prolactin because, after I'd left, she'd had the sudden thought that a way high prolactin level would explain lots of my symptoms. My prolactin level did not come in way high- definitely not high enough to be causing problems. But it is slightly high, and that is a symptom of a variety of diseases. She said maybe it was the high blood sugar.

So I went looking online to find conditions that would cause a slightly elevated prolactin level. The first culprit I looked for was diabetes. I did not find any studies linking high prolactin levels to diabetes but I'm not sure if I just didn't look in the right places. I did find some pieces on prolactin being slightly high in hypothyroidism. I don't really have any symptoms of hypothyroidism at the moment but I do have a history of thyroid disease, so it's possible.

It probably occurred to her to test prolactin because she sees a lot of transgender patients and, when starting a trans person on hormones, medical practitioners are required to screen for prolactinomas, which can be exacerbated by hormone use.
Prolactin is a hormone made by the pituitary gland. It is mostly known for making women lactate, which is to say, have milk for babies. It goes up during pregnancy and while women breastfeed. For women who are neither breast feeding nor pregnant, normal is roughly the same as for men. Prolactin has some other jobs in the body as well, including helping the body to use insulin. Prolactin levels are slightly abnormal in a lot of different medical conditions, but are very dramatically off when people get prolactinomas, which are tumors secreting prolactin.
It has occurred to me that I should maybe do more research on the relationship between prolactin and diabetes and write a post but so far I'm still confused. Maybe prolactin will show up in my November line up of obscure diabetes facts.

P.S. In case it's not clear in my post, I want to stress that my prolactin level itself is not a problem, I already have enough symptoms that an indication that I have something else going on is not bad news, and this particular bit of medical information is mostly just intriguing to me.

Dexcom Data (in the Butt)

2011-05-26T21:58:00.003-05:00

I wore my 21st sensor on my left hip/buttcheek. It lasted 15 days before I pulled it due to itchiness. It was actually not functioning all that well by then but I didn't have any other sensors, so. It was surprisingly not in the way while I was doing anything but trying to go to sleep. Unfortunately, I tend to roll around a lot while trying to fall asleep- doesn't work with a sensor on the edge of my butt.
It pretty much didn't hurt until on day 4 all of a sudden I had a pretty intense muscle type pain, and after that it was sort of sore for a while. I had just been sitting on the bus and all of a sudden it really hurt.
I thought it was a reasonable success.

I received word that I'd gotten insurance approval for CGMS wear yesterday and got a couple of boxes of sensors shipped; they arrived this morning and sensor 22 is now on my other hip. So far it's been okay except it went to ??? about an hour ago, but I think that's just because it's the first day.

In sum, my sensor experiences to date:

Sensor 1 left arm, inserted Sept 1 removed Sept 17 due to itchiness
Sensor 2 left abdomen, inserted Sept 19 removed Oct 2 removed because it failed
Sensor 3- left leg, inserted Oct 2, ripped out Oct 4
Sensor 4- left leg, inserted Oct 4, failed Oct 14
Sensor 5- left arm, inserted Oct 14 removed Nov 4
Sensor 6- left abdomen, inserted Nov 4 removed Nov 20
Sensor 7- right leg, inserted Nov 20 ripped out Nov 22
Sensor 8- right arm inserted Nov 23 removed Dec 10 due to itchiness
Sensor 9- right leg, inserted Dec 10 failed Dec 15
Sensor 10- inserted Dec 15, removed Jan 8th due to itchiness
Sensor 11- inserted on Jan 8th, removed Jan 9th because it didn't work at all
Sensor 12- right arm, inserted Jan 10th removed Jan 26th (itchy and ???)
Sensor 13- left arm, inserted Jan 26, removed Feb 2
Sensor 14- left abdomen, inserted Feb 2, took out Feb 13
Sensor 15- right arm, inserted on Feb 13, pulled Feb 22- the Dexcom receiver broke while I was wearing this sensor and I had to take the transmitter off while wearing the sensor in order to read the number on in, and the adhesive was just not sticking well- this was not a good sensor experience
Sensor 16- left arm, inserted on Feb 22, pulled Mar 5
Sensor 17- left upper abdomen, started on Mar 5, pulled on Mar 19
Sensor 18- right arm, started on Mar 20, pulled on the 31st due to itchiness
Sensor 19- left arm, started on Mar 31st, pulled April 21st at the three week mark- didn't think it was worth a restart because of ??? episodes a false low the previous night
Sensor 20- right arm, started on April 21, pulled it May 6 because of poor function
Sensor 21- left hip, started on May 8, pulled in May 23 due to itchiness.
Sensor 22- right hip, started May 26 and still in.

Days left in per
arm sites: 16, 21, 17, 24, 16, 7, 9, 11, 11, 21, 15 ; out of 11 sensors, the average is a bit over 15 days, and the middle sensor made it 16 days. This is a great place for sensors.
stomach sites: 13, 16, 1, 11, 14 ; out of five sensors, the average is 11 days and the middle is 13 days. The This is a pretty good place for sensors. The one sensor that did not work was placed on the side of my abdomen where I've had surgery.
leg sites: 2, 10, 2, 5 ; out of four sensors, the average is under 5 days and only one made it past a week. This is not a good enough place for sensors.
hip sites: 15; the only hip site sensor made it 15 days. I am still considering this experimental.

Why I pulled them:
Itchiness (usually combined with other reasons) - 7
Failed Sensor - 4
I didn't pull it, it pulled itself- 2 (both leg sites)
An old sensor doing worse that had not failed -2
It was just an old sensor and I was afraid to wear it past x days- 1
Did not write down reason- 5

2011-05-20T01:13:00.003-05:00

I'm feeling crabby about the blogger breakdown, and particularly about the fact that at least five of the comments that I know were left on my posts are not back. Sorry.

I finally got my Dexcom data to upload, after attempts on three different days, on Wednesday. I was not thrilled by my numbers, particularly since my overall fluctuations lately haven't been too bad. Particularly when I put together the sheets that Dexcom wanted me to send to insurance (we're hoping I'll have coverage next week), I was struck by the fact that I've left the field blank in the notes area.

One of the weaknesses of Dexcom is that you can enter in "events," but without a computer, you can't access them. If I enter in how many units of insulin I took, it might be useful to know a month later while looking at logs, true- but it will be WAY more useful in half an hour, when I'm trying to remember how many grams of carbohydrate I should each. So I don't have much motivation to enter in "events" even when I do take a careful note of them.

But I haven't been taking a careful enough note of them. In recent months, I have frequently injected and then ate more or less than I injected for, because I either didn't count the carbs that I ate, or I forgot how much I injected (oh man, I do that a lot), or I got hungry but didn't do an extra shot, or I injected for how much I would like to be hungry for, but wasn't actually anywhere close to being that hungry.

So, anyways. Today after I bought a lot of bananas, I figured out a carb ratio. Yes, I figured out. The problem is that the ratios I could find were for bananas without skins- but I want to write the ratios on the banana skins, without peeling the bananas first. So I peeled one banana and compared the weight before and after (I was hypo anyways). I figured if the weight: carb ratio of a peeled banana is 100:21, and the weight of the banana I peeled had a ratio of 160:90 unpeeled vs peeled, then I just had to weigh the other bananas (with peels) and multiply the weight in grams by (90 times 21)/(160 times 100). So I did.

My favorite carb counting website, carb-counter.com, appears to have been redesigned and it's not my favorite anymore. It doesn't give the carb counts by weight! What The Fructose, I say.

Dr. Bernstein recommends the Accu Chek Aviva and I continue being frustrated with Accu Chek Aviva. I'm also having trouble getting my fingers to bleed.

This is turning into a too long post. Sorry!

10 Things I Love About Diabetes

2011-05-13T17:53:00.003-05:00

Believe it or not, I'm having a hard time picking my favorite thing about diabetes. But here are a few:

Studying diabetes means studying almost EVERYTHING. Within the realm of medicine, I learn about genes, nerves, veins, blood, insulin, the entire digestive system, the immune system, and so forth, with a brief foray into veterinary medicine. Within the world of politics, diabetes prompts me to learn about business, congress, the FDA and CDC, the history of medicine, drug laws, international trade and relations, diseases endemic to other places, life expectancy in general, and the list could go on forever. Within the blogosphere, diabetes prompts me to learn about social interaction, grief processes, fighting schools, the insurance appeals process, how to use the internet, etc. Learning about managing diabetes means learning about diabetes products (scores of them), nutrition, and how to understand what I read. Figuring out how to understand what I read requires learning about statistics, logic, probability, and lots of vocabulary. I could learn forever.

The lived experience of type 1 diabetes is something you can't choose. It has to choose you. I felt pretty special and lucky after I was diagnosed with diabetes.

There are always options within diabetes management. A gazillion of them!

The DOC.

The real life diabetes community.

Because of diabetes, I have an endocrinologist. Because my endocrinologist is really really awesome, I got diagnosed with gallstones after a decade of gallstone symptoms.

Diabetes got me over my fear of needles, and pushed me past my prejudices about medications. Without diabetes, I would probably have taken longer to decide to go on testosterone- and that would have been awful.

Diabetes gave me the experience and the confidence to know how to interact with the medical system when I needed it for other things.

Diabetes pushed me to think harder and deeper about what it means to be mortal.

Diabetes lets me win arguments about when to eat.

10 Things I Hate About Diabetes

2011-05-12T09:53:00.000-05:00

In no particular order

Bruises, scars, and trying to find a place to stick my needles. Especially with a CGMS. Ugh!

The cost, and feeling like I am a cost to society on account of being more expensive to keep alive.

Being immediately accountable for things I do.

Being held accountable for things I didn't do.

It kills people.

It orphans people.

It emphasizes class differences.

Sleep deprivation.

The necessity (?) of animal testing and use in making insulin and other diabetes medications.

The things it prompts me to wonder about my future.

A Bloody Friendship

2011-05-11T21:26:00.000-05:00

I met my best friend when we were in high school. I was 13, and diabetes, as far as I knew, was something like an allergy to sugar.

Nevertheless, I knew some things about blood. I was ALWAYS bleeding. Between chapped lips, fingers, and feet, nosebleeds, menstruation, and the blood inevitably showed up in my phlegm when I got sick, I saw blood every day. My friend thought it was pretty gross.
We'd be talking about something, the war that was breaking out in Iraq perhaps, and he'd interrupt to tell me that I was bleeding and I'd tell him he was being soft and that it was no big deal.

Although I was overall bleeding less by 17, diabetes gave me a new reason to bleed.

I was impressed a few months after my diagnosis, when he asked to see how I checked my blood sugar.

I took out a strip and put it in the meter. I took out my lancing device, changed the needle, poked my finger, told him it was no big deal, just a little blood, squeezed- and the blood went squirting! To add insult to injury, it continued to bleed for about five minutes. Argh!

Dear Stranger,

2011-05-10T09:48:00.003-05:00

I have diabetes.

If you see me with a needle, give me the benefit of the benefit of the doubt- I didn't choose a need for needles.

If you see me acting drunk or passed out, give me the benefit of the doubt- I'm probably not drunk and I'd like you to try to talk to me. If I don't respond, call an ambulance.

If you see me eating, give me the benefit of the doubt- I can eat that.

If you have diabetes too, give me the benefit of the doubt- come up and talk to me.

Thanks,
Jonah

Bernstein Minus Diet

2011-05-08T19:27:00.002-05:00

I checked out Dr. Bernstein's book last week mostly because somebody had asked me something about it, but also because I've been intrigued by mentions here and there to some of Bernstein's ideas. The most famous part of his diabetes advice is a very low carb diet, which I believe I've already written about why I don't believe in.

But mentions of his other ideas have interested me. Here are some of the other ideas that have interested me:

- Injecting for protein. I heard about this from somebody who was not a follower of his, but who was giving her daughter insulin based on a calculation of all of the carbs minus fiber plus 1/4 of the protein in each meal. I gave that a try at the time and it didn't work but I think that was probably because I didn't get my equation right; it does make good sense that you would need to cover your protein, and I have noticed that I go high if I inject only for the carbs in very high protein foods, if I eat a lot of them (especially nuts).

- Splitting basal shots into two shots in order to get a more consistent dose. This makes good sense, I just don't feel like taking more shots. But maybe I should. This may be part of why doing a morning and evening dose of Lantus helps some people.

- Injecting correction doses into muscle. I'd actually heard that Dr. Bernstein injected insulin intravenously for quick corrections, but his book specifically says intramuscular. I know people who have come up with that idea on their own. Me, I think a lot of my Novolog shots end up being intramuscular just because I have very limited stores of fat. And from what I understand, whether or not an intramuscular injection will actually get absorbed faster depends on a lot of variables- it simply won't absorb as reliably.

- The Blood to Carb Ratio per weight given in Dr. Bernstein's book does not agree with the ones given in Think Like a Pancreas. This makes me very very curious as to why they disagree.

- Dr. Bernstein recommends some glucose meters I've never heard of. There's a phone number to call and find out which one he is recommending after the book's publication, and next time I'm home during the day (Tuesday) I think I'll call.

- He also recommends checking blood sugar on the backs and sides of the fingers. This sounded great to me but when I tried I didn't get much blood. If you have used his method for checking blood sugar, and it worked for you, please leave a comment.

Changing topics- I pulled the 20th sensor on Friday and took almost a 48 hour break from sensors. I put the 21st on the upper outer part of my butt. I think I'm gonna have to sleep on my stomach for a while, if I can.

Short Update

2011-05-05T22:17:00.002-05:00

I was extremely surprised to find a message on my machine from the nurse saying that my gastric emptying study was normal. I don't believe it. I watched the screen and I didn't digest anything for the first hour. No way that's normal.

Globe's A1c dropped to 5.3%, which probably means that his slightly high blood sugars were caused by something that has gone away. Unfortunately, his mania has returned full force and then some.

I restarted this sensor so it's on the third week but I probably shouldn't've. Too many ???s. But I still don't have coverage (they want more a more recent upload, they say, which they would have had if the paperwork had been processed in a timely fashion)!

I'm having this Dexcom receiver replaced. It still works, but the alarms are vibrates only. It'd been vibrating less and less. So I'm gonna keep using this monitor until I take out this sensor, and then use the one that's in the mail now for the next sensor. The annoying thing is, the software assumes I'm different patients if I have different monitors.

The Gastric Emptying Scan

2011-05-02T11:56:00.003-05:00

I took a reduced dose of Lantus last night (went down to 9 units from 10- but a single unit does a lot these day) and set the alarm for 3 AM. Woke up at 3 AM with an SG of 269 and bg of 298, feeling moderately dehydrated. Took 1 1/2 units of Novolog by syringe and drank some water, reset alarm for 6 AM, went back to sleep.
Got up at 6 AM, made a lunch, packed, had to think for a bit about what to wear because the nurse practitioner had asked me not to wear metal- no pants with zippers, no belt. So I found my sweatpants and then realized I'd look kind of silly with my usual dress shirts and sweatpants. Anyways.

Took a couple buses, arrived at the Nuclear Medicine Department at 7:40. Tried to use the bathroom, couldn't. Sat around being bouncy. Got called in at 8:05. Followed the nurse to a room with a lot of equiptment and a tray with a cup of water and a cup with about a half cup of oatmeal (labeled oatmeal with sulfer something), also a fork. The nurse was not happy when I asked for the carb count, but she got it (18 grams). I took a unit of Novolog by syringe (I hope- the syringe had a zero marking that didn't look like zero). Asked if it mattered whether I drank the water or ate the oatmeal first; she said no, but eat fast. My stomach started hurting a quarter way through the cup of water, which is unfortunately something I expect when I drink more than an ounce of water. I had trouble getting all of the oatmeal with the fork, so I scooped some with a finger. The nurse was not pleased with me when she saw that, on account of me having gotten radioactivity on my fingers. So I washed my hands.

I took off my sandals and laid down on the bed sort of thing. I had a pillow or two under my head and a pillow under my knees. The nurse asked if I wanted a blanket. I didn't. She said to lie still and not to put my hands over my stomach. I asked what we'd do if my blood sugar went low. She said it's never happened and she'd figure it out if it did. So the bed moved under (and apparently over) cameras, and I was in a tight space, two hours beginning to count down.

The cool part: I watched the screens for two hours. The first hour, nothing happened except for a count down. The white blob of pixels stayed at the top right and top left of the screens resepctively(one screen showed the picture taken from above me, one showed the picture taken from below me). There was a very faint outline of white elsewhere- on the back screen it looked sort of like a loop. In the first ten minutes of the second hour, the pictures changed dramatically. Blobs solidified lower on the screen, and over the second hour, the pictures took the shape of two fat bottles with the original blobs as stoppers and the lower blobs like liquid at the bottom of the bottles.
The scan ended after two hours- BEEP BEEP BEEP and the nurse came in and let me out which was good and bad- good because I needed to go pee and bad because the scan was supposed to go for longer. She said my doctor should have the results tomorrow.

The thing that made me most annoyed was that I had spoken on the phone with a nurse practitioner on Friday. She'd told me they were in the process of going from one protocol to another, and that we'd be doing the latter. I am very much in favor of the latter protocol. But the first protocol is what was used. The nurse said that firstly, an attending who was out of town would have to sign off for the second protocol to be used, and secondly, the second protocol had not yet been adapted for a diet like mine- it had eggs and, horror of horrors- strawberry jam! I refrained from mentioning that my diet does in fact include strawberry jam on occasion.

My blood sugar (or at least what Dexcom displayed) was excellent through the test. It showed 126 with a downward drift at the beginning, an initial "spike" to 135, a continued downward drift to 93, and then a very slow small rise in the second hour. My stomach hurt a lot and at some points I wanted to bolt up and rock, which is unfortunately fairly typical for me, both after meals and at some random times. I think my digestion was impaired both by the speed that I ate with, and by lying down. After big meals if I nap, I always wake up with vomit in my mouth.

I am curious about whether this scan will be read as being normal, and if not, abnormal in what ways. I'm not sure what part of the screen I was watching was showing my stomach- whether gastric emptying time is the time it takes to go from that blob in the top corner of the screens, or whether it's the time until all of the food is off screen or dispersed. If it's the first of the two, I think it was delayed because there was almost nothing doing the first hour, and still quite a large blob at the end of the second hour. If it's the latter, it was definitely delayed. So maybe I do have gastroparesis.
The diagnosis code the doctor used was GERD. I couldn't find an online reference about gastric emptying scans that confirmed the use of a gastric emptying scan in diagnosing GERD, but I would say that the scan showed that nothing was moving upwards, and that anyways my history should prove I don't have GERD- I've now been on three medications that treat GERD and none of them made me feel any better.

Tomorrow I should have a better idea.

Sorry I am late with that medical logic scenario I promised. I still don't have time as I am on a public computer- I just wanted to type up what happened with the scan while the memory is still really clear in my head.

2011-04-29T18:36:00.002-05:00

It's been a heckuva day. I woke up this morning to a Dexcom reading of 46. So I ate about 12g of taffies in bed, tried to convince myself to get up. Half an hour later, I'm still in bed, Dexcom says LOW. I test on my meter, it says 42. Okay, that's not exactly "Under 40" but it's within 10%. I eat some more taffy, head to the fridge and finish up the almond milk (low carb but high glycemic index- usually shoots my blood sugar right up).

I head over to my parents' for breakfast, eat about a quarter of a large pineapple, a roll, and some mints. I take three units of Novolog. My blood sugar is trending upwards when I leave the house for work. My breakfast spike, such as it was, is over by the time I get to work, at 88 with a down arrow. I eat taffies all morning. At lunchtime, Dexcom says 48 and the meter says 66. I eat all 40 grams of carbohydrate lunch (a muffin and a cucumber) and don't take any insulin. Dexcom shows my blood sugar hitting 90 as I leave work. My meter says 110. I go hypo on the way home. Two more taffies (each 6 grams of carbohydrate) fail to get my blood sugar over 100. Once home, I eat more taffies. No dice.

So I was particularly gratified to find a message on my machine from a nurse practitioner working in the nuclear medicine department of Northwestern. She wanted to go over protocol and specifics for my gastric emptying study, which is scheduled for Monday morning. I called and left her a message and even though it was after hours, she got back to me within a few minutes.
She said that actually, I could eat until 4 AM the morning of the test, not just to midnight. She said that their new protocol, which they are transitioning to now, says that they want blood sugar under 200 at the time of the test (this is a very good thing IMHO- the test is not really meaningful at high blood sugar because many people have delayed gastric emptying with hyperglycemia but not with euglycemia), and that if the blood sugar is slightly higher they might go ahead anyway. She went over the food issues, said to bring my meter and insulins (as if I would come without them!) and was responsive to my comments.

The gastric emptying test in diabetes is actually a pretty perfect example of why logic matters in medicine. But I have to get off the computer now, so I'll type up the question tomorrow.

Consider Data Collection Biases

2011-04-28T10:29:00.003-05:00

I am thinking about writing a series of posts in which each post illustrates how I look critically at scientific/medical data.

For instance, for each of the years 1999-2007 inclusive, the CDC has published a long document that says how many death certificates issued in that year were for people of each year of age, as well as what race and sex were put down for those people. Here is the link: http://www.cdc.gov/nchs/nvss/mortality/gmwk310.htm

Now, there is lots of data to be found in those tables. One thing that struck me was that 68 people are listed as having died at ages 115 or older in that 9 year period. OK, so far so good. Out of those 68, only 18 had their race listed as white. Only 11 out of the 68 had a recorded sex of male, with three recorded as white male.

Since roughly 85% of all deaths were in white people, and roughly 50% of all deaths were in male people, this means that if recorded age at death didn't have to do with sex or race, you'd expect that 57 or 58, rather than 18, of the people who died at age 115 or higher would be white. You'd also expect that about 34, rather than 11, would be male. So in fact, being white or male cut down the odds of making it to age 115 on the death certificate by two thirds.
Looking only at rates of people who've made it to 100, the picture warps further. In people whose death is recorded at age 100 or greater, men make up about 1 in 6, so that there being 11/68 of them 115 or older is not at all surprising. White people, however, make up about 10/11 of people with death recorded at 100 or greater, making their absence in the group of people 115 or greater even stranger.

Okay, good, now let's step back from the data for a moment. If you were a newspaper journalist and you wanted to report on the statistics above, you could choose a lot of different slants.
You could claim, "African Americans Weather Last Years Better, says CDC."
You could claim, "Whites Unlikely to Be Longest Lived."
You could claim, "Minorities Reach Majority at age 112."

Or you could be a little less certain. The death rates as I see them do prove something. They prove that in the United States during the period 1999-2007, White persons were less likely to have an age greater than 112 written on their death certificates. We could be reasonably certain that this also translates to a similar expectation for 2008, 2009, and 2010, since the trend was not really changing, and the margin was very muchly significant.

What we couldn't know, however, is whether those records represent the actual ages at which people died. Maybe, for some reason, a gene that makes death less likely in the eleventh and twelfth decade of life is more common in non-white populations, or non-whites do a better job with elder care, or something. Maybe the CDC statistics do represent that. I like to think that's so, just because it's kind of a cool possibility.
But the other possibility is that age is reported differently based on race (or based on something that is statistically different in different racial groups). Maybe, a hundred years ago, white people were more likely to have accurate birth certificates. Maybe for cultural or other reasons, non-white persons are more likely to have their ages misrepresented on their death certificates. Maybe, particularly since these people were born in the era before social security numbers, Black people were more likely to claim to be older than they were when applying for such things. Maybe doctors are sloppier when writing up death certificates for non-white persons.

Which leads to another tenet of mine: if data can support more than one conclusion... look for more data!
In this case, I don't have access to the other data that would help, but the kind of data I'd like to see are survival rates to age 115 or older in a variety of other countries. Do countries with better or worse record keeping have similar or different results? Will this trend in death tables continue past the years where all people dying were likely to have gotten social security numbers at birth? If we look at the people with no age written on American death certificates, will we find a racial bias? Will it be enough bias to explain our data away?
What will CDC data show in twenty or thirty years, when we can expect that the data collection at the births of our oldest citizens will have been much improved?

Not at all D-related: I have a kindergarten chess class on Wednesdays and yesterday in class, one of the students came up and tattled, "Nico said the B-word."
So I look, kind of dubiously, at Nico, who is looking teary eyed. And the kid insists, "He did! He said, 'Sit on your...'" and the kid leaned in and whispered, "butt".
It was all I could do not to laugh.

Evaluating Medical Claims

2011-04-26T23:43:00.002-05:00

Today I was talking to an almost-doctor (graduates med school in two weeks) I know in a social/religious context. We were talking about various things and he said he'd like to see more of me and I said if he wanted to set up a schedule to do some studying, I'd be open to that- what would he like to study? I was intending for him to name a religious topic.
But he said he'd like it if we could be medical chevrusas*, maybe, if he has time for regular get togethers, which he isn't sure he does. If we could pick a medical topic and then both of us read up on it, and get together to discuss it.

And then I started thinking about ground rules for discussion of medical topics (I also started thinking about medical topics that might be interesting to discuss- the major ones that come to mind are issues of debate such as chronic pain management). That struck me as being relevant to a comment I got many posts back when I wrote about the credibility of the big pharma and the medical establishment. I was asked what I thought of alternative medicine. So here are my thoughts.

1. Speculation is interesting but takes a back seat to evidence.

2. The only evidence that counts is data, not theories, not what a doctor says, and not a textbook recommendation. If somebody doesn't tell you how he knows something, he doesn't know it. Evidence that I consider relevant is practically everything: animal and human studies, case studies, molecular studies, studies on the disease in question and on related diseases, and epidemiological data. Especially epidemiological data.

3. Evidence never proves anything other than that it exists. It suggests many things. When considering evidence, look for the data source, not the researchers' interpretation of it, and always keep the limitations in mind. For instance, the time and place, type of research subjects if any, lab norms if any, data not given, placebo effect, and other variables.

4. The placebo affect should always always always be considered in human studies, particularly case studies. This is why you will get testimonials that something works when it doesn't. People think they got better because of the pills when actually it was their belief in the pills.

5. The related phenomenon is false attribution, for instance, if a doctor (or patient) claims the patient got better because of the medication, whereas the patient got better just because he happened to get better.

6. Understand the values or motivations of researchers when evaluating their advice.

Medical studies or advice is often based on a value system, sometimes more obvious than other times. A recommendation to take a medication may stem from the belief on the part of the doctor or researcher that the disease is worse than the side effects of the medication. Identifying these values is important because many researchers and some doctors are not even aware that there are other value options.
For instance, your doctor may believe that it is better to take fewer shots even if this raises your A1c a bit, because he thinks that taking shots lowers your quality of life. You may or may not agree.
In a less obvious scenario, a study came out a few months ago claiming that obesity lowered life expectancy even more than previous studies said. Upon closer inspection, this was because the doctors were looking at quality of life years- and they had decided that quality of life with certain obesity related diseases was even
worse than other researchers thought. The issue was not life expectancy- it was researchers' opinions about how much fat people could enjoy life.

7. Understand the definitions of the people or diagnoses being studied.
I'm sure all of my readers can understand what happens when rule 7 is not followed- you get people talking to you about a diabetes that isn't the one you or your kid has.
When you know who was included in a study, you have a better idea of who it is relevant to, and what it means.

8. Understand sample bias. When looking at any study, it helps to understand how certain people came to be participating in the study. People included in a study on "natural medicine" are likely to be people who like the idea of natural medicine.

9. Sometimes people lie.
Mostly in looking at medical research, this is (hopefully) an accident where the conclusion doesn't really match the data. Sometimes however, doctors and scientists have been known to falsify data. In case studies, there is often a possibility that things didn't go exactly the way the patient or parent says they did. And when doctors or other people administer surveys with multiple choice questions or even open ended questions, there is a HUGE potential for misunderstanding.

10. Nobody is average about everything.
If a study shows that a medications lasts for 26 days in the average subject, that doesn't mean that it can't last 96 days in you. Or 2 days, for that matter.

11. Nothing affects just one thing.

12. If A and B happen in a given relationship every time, your researcher will often assume A causes B. The logical possibilities however are:
A causes B
B causes A
C causes A and B
the researcher didn't really test enough to be sure about every time and it was chance

*Chevrusa is a Hebrew word that refers to a study partner- typically a study partner with whom one studies a religious topic.

2011-04-24T15:17:00.002-05:00

On Thursday morning, sensor 19 having been in for a full three weeks and starting to act up (???s and false lows), I pulled it, took a bath, and put in sensor 20. One thing I hate about changing sensors- I change sensors in no small part because the old sensor is not working really well and I want fewer ??? episodes and better accuracy. So I put on a new sensor, and for the next two days I might get better numbers, but more often than not, I get less accurate numbers and sometimes ???s. At first I tend to wonder if the sensor is a bust or if I misremembered how accurate the previous sensor was.
This sensor took a few days to shape up in terms of accuracy and is now doing pretty well, although overacting a bit to lows and highs (it claimed I was LOW when I woke up this morning, whereas my meter said 46).

As you know, my insurance policy changed to cover CGMS usage in people in my demographic (under 25s with type 1 diabetes, intense blood sugar control efforts, and labile blood sugars) on Jan 1, 2011. I called Dexcom to ask them to get me coverage in light of this new policy and they confirmed that I ought to be covered on Jan 18th. Dexcom then sat on its ass. On March 23, my doctor and I filled out all of the forms that Dexcom could want and the doctor faxed them over while I waited in his office. No word from Dexcom.
Last week I called to bug the rep who said she would get me coverage. I left her an irate message, and an hour or so later got a call from the person who apparently replace her. The new person didn't know anything other than that she'd just been forwarded some of the paperwork from my doctor, on which a diagnosis code was missing, so she called to talk about what we could do if I had a miscellaneous form of diabetes (I don't). I filled her in, she said she thought she could get me coverage within a week but would update me within a week in any case.
It's been a week, and I did get an update. Apparently my insurance might cover without pre-authorization, she wanted to know if I wanted to place an order now or get pre-authorization first. Of course I want pre-authorization, I already HAVE sensors!!! So hopefully next week I'll have authorization aka coverage.

I'm thinking about placing the next sensor on my butt. I was trying to figure out where on my butt a sensor would go. I'm thinking maybe to the side? Where do people place sensors and infusion sets when they wear them on their butts?

Oh! And I drank about three cups of low alcohol (about 3%) Rashi wine on the first night of passover. I then took a little less insulin for the meal as well as for the overnight. I went high after the meal, came down really smoothly and had a great blood sugar night.
The second night I didn't drink any wine (different household, different wines available) and had a similar meal time blood sugar experience. That night I forgot the Lantus (!!!) so I really can't compare it to the previous night. On the plus side, I didn't get ketotic.

I've been thinking a lot lately about life expectancies in various contexts and what people expect from life when childhood mortality is low. About how most Americans assume that their kids will grow up, that it is an outrage that one kid might die... but in many countries, kids die as a matter of course. Malnutrition is among the leading causes of childhood death in South Africa, a country in which life expectancy is in the 50s, and a quarter of deaths in 2000 were related to HIV. More than a dozen countries have a mortality rate for children under of five years of 1 in 6 or higher.

On Being a Medical Geek

2011-04-17T00:18:00.002-05:00

I have Asperger Syndrome. One of the hallmark features of Asperger Syndrome is interests that are unusual in intensity or focus. Personally, I'm something of a polymath- I like to learn about everything. I have never been interested in one thing to the exclusion of all other things. But it is clear to anybody who has ever engaged me on certain topics that there are some topics that just get me going. And going and going and going.

I have always been fascinated by disability. Before I was diagnosed with diabetes, I focused more on the ways that disabled people function in society, self-perception, etc. I had already just so happened to have read two nonfiction autobiographies by type 1 diabetes (unfortunately this left me with the misconception that diabetics couldn't have any sugar). After I was diagnosed with diabetes, my fascination with disability very slowly morphed into a more medical fascination.

Being fascinated with disability is all and fine, but it has a major problem. Namely, disability exists only in the context of people. And while disabled people have many different takes on disability- whether they want to be referred to as disabled, a person with a disability, or forget the labels entirely, whether it matters to them or not, whether they are interested in others with their conditions or not, to what extent they see disability as desirable or otherwise, their political views on disability, and their level of education and interest about their conditions- they almost universally do not want to be seen as their disability.
I understand that.

I have taken to heart one of the pieces of advice I read for how to be a good ally / how to react to transgender people. It recommended that allies not ask the person to explain everything- that they not ask voyeuristic questions- but instead do their own research.

For the most part, I am not tempted to ask people rude questions about their medical conditions and/or disabilities. I don't usually make incorrect assumptions, and for most medical conditions, I know enough that I'm not that curious. For instance, when talking to a friend with cerebral palsy, I'll definitely be paying attention if the person talks about something medical- but I feel like I already know enough about cerebral palsy that I have no inclination to steer the topic in that direction. If the person does mention something I find interesting- for instance, one of my friends with cerebral palsy has an implanted pump made my medtronic- I'll comment (Hey, medtronic is a big maker of insulin pumps- do you know if they're connected?), file the information away for later, and then research it myself.

Occasionally, however, I run into a situation where I'm not sure where the boundaries lie. As a general rule, I don't initiate conversations with strangers about their medical issues (although, since I very frequently initiate conversations with strangers, I often do end up learning about their medical issues). The exception to that is if I guess that a person has diabetes- then I'll mention that I'm diabetic and whatever I noticed that makes me think they are too.
Anyways, I also know that even when somebody else initiates the conversation, various things are off limits. In particular- I don't make any comments on sexual function or development, I tend to assume that asking people about if they had behavioral risk factors will offend, and I do my best to avoid judgments.

But sometimes, particularly online but sometimes in person, a person will ask for my medical advice. And if that person has a disease or disability combination that strikes me as very exciting, and especially if I've no prior knowledge of the person, I have a hard time keeping the disease in the perspective of the person. I know that this disease is not a happy occurrence... but I get excited anyways. And the more I think about, the more excited I get. I know I've helped people to understand their situation medically and some people have even told me that my advice has helped them get diagnoses or improved blood sugar control. That helps- but I still have the problem of the glee. I still have the basic problem of not relating to people. Online, I don't think that usually matters too much since people can easily find somebody else's shoulder to cry on- that can't so easily find somebody to translate medicalese and look up the issues they've got. IRL, I'm not so sure. Should I just say, "This is my Asperger's, I'm not good at supporting people," and move on?

The other problem I have with being a medical geek are feelings of guilt and a sense of not belonging. Why? Because among my reactions to being diagnosed with diabetes was that this was really really cool! I was overwhelmed, scared... but excited! Unlike Asperger Syndrome, which is the sort of thing without a really solid definition, and which people sometimes disbelieve me about having (although other times they guess it even when I don't want them to), diabetes is a well defined enough condition that I can prove that I am diabetic. Although I expected people to disbelieve that I had diabetes in the same way that people react to me saying that I have Asperger Syndrome, this has never happened. The most dramatic reaction people have is to comment on my skinniness in relation to the diabetes- they never really object when I say I have diabetes.
Instead, I found, for a long while, myself objecting. I kept having the feeling that I was an imposter. Any one or two day string of low or normal blood sugars would make me anxious and I'd be somewhat relieved when I had a high reading again.
It took years before I stopped expecting somebody to challenge my diabetes (I think mostly it was time that helped but also the extra things I've had in the past few years). I'm wondering as I type if anybody will challenge me on the basis of this post- I'd guess not.

Recently a woman whose child has a combination of medical diagnoses and unexplained symptoms that fascinate me told me that she wished she was me- she wishes she could read and understand the medical literature like I do. I'm not sure how to respond. I'm not sure it's a good thing to wish for. Not that I'm really, at the end of the day, sorry that this is who I am and what I do- out of the various perseverations I might have had, this one at least can be useful. But it's not a little thing. It's not some small facet of who I am. It's something that makes me very very careful about what I say to her. I know too much and too little, at the same time.

Other Health Issues with Diabetes

2011-04-13T09:51:00.003-05:00

On Thursday night I had one of those evenings that had better have been teaching me something 'cause it was awful.
As I got home anticipating supper, Dexcom showed 98 with a downwards drift- perfect for supper, right? My folks had already eaten a lot of supper but there were some wonderful leftovers left. I injected and began eating the apple crisp my mother had made. Once I finished the last piece, I started licking the dish.

Then I choked. Now, I have been choking almost on a daily basis for as long as I remember. And usually, like that night, I choke on liquids. But usually it's choke, cough and swallow and then I'm fine. This time? Well, I coughed and coughed and coughed. When my mother asked if I was okay, I couldn't get any words out to say that I was. I drooled all over myself because I couldn't close my mouth while coughing. I threw up a little bit from the force of the coughing. And then... it was over. I could breathe again. My chest was sore, there was vomit in my mouth, but I was breathing.
I felt pretty done with supper, KWIM?

Unfortunately, Dexcom went of right then UNDER 90 showing an 88 angled down. Just lovely. So I sit down and start eating. Half an hour later, my stomach hurts. A lot. My sensor is showing something in the 50s and I'm feeling hypo. Oh boy, I hate this.

Another hour and probably a hundred carbs later, I'm sitting in the 40s with a massive stomach ache. I don't want to ever eat again, thank you very much. My blood sugar begins to rise. It rises by about 1-2 mg/dl per five minutes. That is very slow when your blood sugar is 48 and you've been trying to treat as hypo everything under 90.

My blood sugar continued to rise very slowly until many hours later it was high. I took a couple of units of Novolog and went to bed. I slept through the high alarms. I woke up in the morning feeling stuffed and dehydrated with a blood sugar that was in the mid 300s- apparently it had peaked around 390 at 5 AM. No sharp rises. Just a very slowly digested meal.

In retrospect, I think I should have used a miniglucagon injection.

Speaking of slowly digested meals, I have been on the lansoprazole(prevacid) long enough that if it's not working, it's not going to. So my doctor sent the nuclear medicine department (I remember them- that's where I had my iodine uptake scan and everybody else in the waiting room had cancer) an order for me to have a gastric emptying study. The diagnosis is GERD, which surprised me. I called and asked if they could accommodate a vegan diet- they said yes. I scheduled the study for 8 AM Monday, May 2nd.

Tracking Changes (how I think day to day)

2011-04-05T00:14:00.002-05:00

I've had some really rough numbers the last couple of weeks. I spent a few hours under 40 during the daytime despite treating the numbers and even signed out of work early for one nasty hypo, and my Dexcom read HIGH for the first time in months (it may have been exaggerating though). My nights were being really erratic.

So I decided to do three things. One, take a laid back approach- don't over react to numbers. Two, switch Lantus injection location. Three, log.

Taking a laid back approach isn't a real change.

Switching Lantus injection location is. When I went on Lantus, the ped endo said it had to be injected in my butt, which idea for some reason made me pretty uncomfortable. But at this point, I've been putting a Lantus injection into my right buttcheek on odd days of the month and into the left buttcheek on even days of the month for 98% of days for about 54 months. Which is a long time. In that time, my butt has kinda disappeared.
I decided to inject the Lantus into my stomach, which is the only other location with a chance of working; my arms get a sort of white lump if I inject more than about two units of Lantus into them at a time (I know this from when I tried splitting the dose), I don't have any place on my legs that I can keep hold of a pinch on while flexing a muscle, and despite my fondness for injecting Novolog into my boobs, I don't make the mistake of thinking that I'm actually injecting into fat there (testosterone took care of that).
I'm giving my butt a break as an injection site for a month. If at that point I want to stick with putting the Lantus into my stomach, I guess I'll start injecting Novolog there, or maybe I'll try wearing a sensor there.

Logging is something I've sort of fallen out of the habit of doing, particularly logging meals, and my current planner doesn't lend itself to it. I'm going to log exhaustively for a week and then give it up again. Hopefully this will lend itself to better ratios. Here's the log:

Saturday evening I injected 10 units glargine.

Overnight I had a hypo that I treated with cookie crumbs (probably about 15 grams of carbohydrate).
At 9 AM my bg was 4.1 mmol (I'm using an mmol meter and a mg/dl Dexcom right now), and I drank an once of apple juice with my lansoprazole.
At 10 AM, sg was 81, I took 6 units aspart and ate 52 grams of flatbread (I estimated that was 25 grams of carbohydrate) with 2 tbsp of hummus (3 grams carbohydrate) and 76 grams of sweet roll which I guessed was 40-50 grams of carbohydrate.
At noon, I was low took three swallows honey.
At 1 PM, I was 71, drank a coconut water box (14 grams of carbohydrate)
At 3 PM, sg was 246, I took one unit aspart
At 5:30 PM, sg was 192 and droppping, took 5 units aspart and ate 23 carbohydrate grams of cake and 92 grams of pizza which I guessed was about 45 grams of carbohydrate.
At 8 PM, sg was 210, ate 202 grams of pizza (estimated this was 100 grams carbohydrate).
At 10 PM, I took 10 units glargine.
At 11 PM, sg was 200, I took one unit Aspart.

At 1 AM, still sg 200, took 1 unit aspart and went to bed.
Overnight, the Dexcom showed a drop to 120 at 5 AM followed by an upwards drift.
Got up at 9 AM to an sg reading 147 and a bg of 7.3 ( = 131.4) had some broccoli with cooking water which I estimated to be about 5 grams carbohydrate. This resulted in a sharp rise.
At 9:40 AM, sg 171 with a 45 degree up arrow, I took 1 unit aspart. Blood sugar peaked around 185 and then dropped.
At 1:40 PM, sg 126 ->, I took 2 units aspart and ate a piece of pizza which I estimated to be 20 grams of carbohydrate. My sensor showed no spike at all but a very gentle rise, and I went high (above 160) at 4 PM.
At 4:35 PM, sg 171 rising, I took 5 units aspart.
At 5:25 PM, sg 161 with an arrow straight down, I ate about 40 grams carbohydrate of cinnamon bread and sweet roll. My blood sugar dropped to about 100, banked, rose to 140, fell gently.
At 8:25 PM, bg 6.8 (122) I took 6 units aspart and ate 3 cups of beans (about 24 grams carbohydrate), 3/4 cups of couscous (about 30 grams carbohydrate), and five frozen strawberries.
At 10:15 PM, I took 11 units of glargine because the trend seemed to have been upwards.

Right now it's half past midnight on Tuesday and my sensor is saying 157-> but showing a slight rise. I'm contemplating taking a unit aspart (Novolog).

Book Review: After the Diagnosis

2011-03-31T22:12:00.002-05:00

Last week I checked out After the Diagnosis: Transcending Chronic Illness by Julian Seifter, a nephrologist who developed T1 D during his internship, and by Betst Seifter, his wife who I guess is more of a writer. The title and the cover made it look like a self help book, and I've read enough of those before, but I decided to try this one on account of the guy having diabetes.
And it was an interesting book. It was full of anecdotes about patients (with kidney diseases, of course) as well as a bit about Julian Seifter's history with type 1 diabetes (he wasn't interested in taking care of himself more than he needed to function day to day and currently has lost the vision in one eye, is losing the vision in another eye, and has macroalbuminuria) and his speculations about what it takes to live happily with chronic illness.
I kind of thought the book contained a lot of denial- even more than the author takes claim to. But I still liked reading it. It was fun and light reading with some food for thought (particularly about why people make the choices they make).

Bloodwork Results

2011-03-24T20:40:00.003-05:00

No surprises.
The A1c was up exactly as much as I guessed it would be: to 6.7%. In December it was 6.2%.
The TSH was good, 1.1.
The blood sugar they got was 53; the meter in the less than a minute before the blood draw gave readings of 58 and 59. Not nearly as bad as last time.
The vitamin D was 28.4. This is slightly lower than ideal, and my doctor's message kind of went back and forth before recommending a supplement. However, I don't think I'm going to take that advice, because it is the beginning of spring and I assume I'll be getting a lot more sunlight in the next three months than in the previous three months, and because of what happened last time I supplemented (to wit: I overdosed on vitamin D).

I asked my endocrinologist what he thought about Globe's numbers and he recommended taking Globe to a pediatric endocrinologist. So my mother will be taking Globe to a pediatric endocrinologist (Globe is in middle school). Because we want to know if he's developing any type of diabetes and if he is, what type and what to do about it.

Dexcom Upload and Endo Visit

2011-03-23T15:19:00.002-05:00

Before my 10:30 appointment with the endocrinologist today, I went to upload my Dexcom data and look at reports.

This was harder than expected because I opened the Dexcom software and got error after error after error. I had to go into the controls to force quit the program. After that I tried downloading a new copy of the dexcom software and- presto magico!- it gave me the option of repairing the version I had, and did that ably. So then I uploaded my data. I had to pretend to be a new patient because the Dexcom software refuses to believe that one patient might have worn two different monitors.

The data itself was pretty disappointing. In February, I was in my target range less than half of the time (49%). My average for September was 136, October 130, November 137, December was 148, January was 148, February 160, March to date 143.
Part of that increase was probably because I started treating my blood sugar as low at 90 instead of 65. My endocrinologist said that for me, preventing those lows is worth it, assuming my A1c rose the half point I expect that it did, and not a point and a half.

My weight at the endo's was actually the same as it was in December (99 lb), so that was okay. Blood pressure was also good at 104/60. We talked about various things. In fact, we talked for about 45 minutes. I like my endo! He drew blood for TSH, A1c, Vitamin D, and probably CBC. I tested my blood sugar on my meter right before the blood draw so we could get a comparison.

2011-03-20T20:33:00.002-05:00

Globe says it's okay to tell people in general terms. So, a month ago, he started having weird behaviors and physical symptoms, it got worse, we tested him for a bunch of things neurological and physical that came back normal or close to normal (except for blood pressure- high (like 140/90), pulse- high (mostly over a hundred), and blood sugar- slightly high). He was put in a pediatric psych hospital and diagnosed with manic depression, with psychosis. He is currently both manic and psychotic. His two high fasting blood sugars (110 and 104) were followed by an A1c of 5.7%, which is a little high for a nondiabetic.
He's also totally ravenous, both because he's on an antipsychotic that causes increased hunger, and probably also because he lost some weight during the weeks that he had no appetite.

I just had the most symptomatic hypo I've had in at least six months. I had just put in a new sensor and it was in the warm up period. I felt a little funny. I tested. Blood sugar 32 mg/dl. Whoa! Okay, so I ate a bit (like 20 carbs) and went back online. About twenty minutes later, I was having trouble reading and my vision was swimming. I tested my blood sugar again. 29 mg/dl. Oops. I made my way over to my parents' place (up four flights of stairs) and let my father give me lemonade. While I was sitting there, the sweat began rolling down my sides and it actually dripped off of me! Literally.
Fortunately this sensor was on my arm and I really only got very sweaty in the trunk area, so the sensor adhesive was not affected and I didn't get all itchy the way I do when a sensor gets sweaty.
Unfortunately, it occurred only about three hours after I corrected for a blood sugar of over 300. It seems that I'm more insulin sensitive and that it has a longer duration of action than I'm used to. Hope I have no more days like this for a while. I hate days where my blood sugars actually vary by an order of magnitude!

2011-03-18T17:50:00.002-05:00

There's a fast day that usually comes on the day before Purim in the Jewish calendar, but it was moved earlier this year because Purim is right after the sabbath and you only fast on the sabbath if it's Yom Kippur (or medically necessary).
So I was hoping to fast. I had a dose of 8 Lantus that was working for me, so I took 7 units the night before the fast. At 4 AM when I woke up, my Dexcom said 318 and my meter concurred with a 322. Oops. The fast didn't begin until after 5 AM, so I bolused and ate an early breakfast. At 8 AM I was still up at 280, so I corrected with 2 units. By 1 PM I was low. So I ate lunch. Didn't feel like much of a fast!

Globe came home on Thursday after two weeks in the hospital. He is not at all back to normal but the hospital wasn't doing him any good.

What "Preventable" Means To Me

2011-03-12T20:11:00.003-06:00

Among the many things people with type 1 diabetes and their families are often told that I consider to be out and out false is the claim that type 1 diabetes is not preventable.

Why?

Well, if they knew that diabetes was totally genetic, they could say that. If they knew that the risks of type 1 diabetes were... well, nonexistent, they could say that.

But type 1 diabetes is not wholly genetic- there are lots of people out there who have an identical twin with type 1 but are themselves unaffected.
And there are risk factors, and continuing studies looking at more risk factors.
Also, if the rate of type 1 diabetes is not stable (and it does not appear to be) that suggests a nongenetic cause. And yes, I am aware that genetic diseases' frequency can change over time- but not as rapidly as the incidence of type 1 diabetes appears to be changing.

So I think it would be a lot more honest for a doctor to say that although it may preventable, he doesn't know how. Although I think some of the theories on the topic are worth mentioning (on that topic: Don't move to Finland, and don't introduce non-breastmilk foods to your babies any earlier than you have to).

Anyways. One of the things I find interesting about the topic of disease development is how people (particularly parents but also others) get very emotionally invested in their theories and feel personally attacked by the idea that something they or their child had might have been preventable. I don't really understand why.

I mean, let's say that people with certain genes have a 1 in 100 chance of developing type 1 diabetes if they live in the Salt Lake City vs a 1 in 1000 chance of developing type 1 diabetes if they live in rural Siberia (this is actually not a totally ridiculous assumption but it is certainly not a fact, so please don't ask me for a study). That would mean that if you had those genes and you lived in Salt Lake City and developed type 1 diabetes, there would be a 90% chance your diabetes could have been prevented.
I would feel pretty justified, in this hypothetical case, in saying that your diabetes probably could have been prevented- but I would not blame you or your parents for not preventing it. Why?
First of all, it's not very likely that you or your parents knew that you were genetically at a higher risk for diabetes (where high risk means 1% odds or greater). So you didn't know. Fewer than 20% (probably a lot fewer) of people with type 1 diabetes knew that they have any genetic or family risk factors prior to diagnosis.
Second, moving to Siberia would be a pretty drastic step to take to prevent something that has only a 1% chance of happening if you don't move to Siberia. Would you move your family to rural Siberia if there was a 1 in 110 chance that moving to Siberia would prevent one particular disease in a family member who probably wouldn't get the disease anyways? Probably not, since moving to Siberia would in fact lower your entire family's risk of asthma and lung disease, and you haven't moved there yet.
Third, there is no known way to prevent 100% of cases of type 1 diabetes (although theoretically, genetic screening of couples or killing everybody at risk before they develop it would work- I don't think these are likely to happen). So even if you knew all about your risk, and you actually were offered a nice job in Siberia, I don't know that you wouldn't have been one of the 1 in 1000 in Siberia. There's a 10% chance that you would have been, in this hypothetical scenario.
Fourth, what's done is done. Prevention does not mean that it is at all possible to reverse type 1 diabetes.

Also, not covered in my above scenarios, it's quite possible that risks for type 1 diabetes were not ones you could have avoided- for instance, if a diabetogenic virus happened to trigger your diabetes.

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You may have noticed I went longer than usual between posts. My brother Globe has been in the hospital for ten days now. It's not diabetes. I am pretty stressed out. I might tell you all about it, if he gives me permission.

Support

2011-03-02T00:27:00.003-06:00

My father's big contribution to my diabetes care has always been getting me supplies. I'm insured under him, which is huge, but also he's the guy in the family whose responsibility it is to order and reorder the prescriptions that go through the insurance's mail in pharmacy (who aren't always the funnest to work with).

About a month ago, I realized that I was at the point at which I would usually re-order supplies. Not down to my last vial of insulin or anything like that, but down to a bit over a month's worth of one particular item if I used it at twice the normal speed (this is not the same as a two month supply due to the issue of expiration dates). So I mentioned this to my father but somehow I didn't get him the exact information about what needed reordering.

And a few days later he mentioned that we should reorder and a few days later I said we should but we didn't.

Saturday night we finally placed the reorder, after I opened my last vial of Novolog. It was the first time I remember ever getting that close to running out of an insulin, but I wasn't worried. My prescription says I use 20-25 units of Novolog per day. Typically I'm much closer to 20 than 25. The vials contain 300 units and last for me for about 12-15 days. The insulin typically arrives about 4 days after we order it (there was one exception when we ordered around christmastime- memo to all the mail-order noobs- NEVER ORDER PERISHABLE SUPPLIES AT CHRISTMASTIME). Anyways. I wasn't worried.

Then I developed the insulin resistance from a cold. Somehow or another, the vial of 300 units that I opened sometime on Saturday is down to 120 units left. Right- I'm using Novolog at a rate of about 45 units per day and I have 120 units left!
FedEx came today, probably with my insulin, and left a note that they couldn't deliver it 'cause we weren't home.

So I mentioned to my father that with the unusual rate that I'm using insulin, I'm gonna need more insulin soon, or else I'm going to have to go low carb or up the Lantus a lot or something (speaking of which, I upped the Lantus- 15 units didn't cut it last night but maybe tonight it will since I seem to be on the mend).
Since I'm feeling stupid and chastened and guilty over not having ordered the insulin sooner, and cutting it so close (can you imagine not having any short acting insulin?! Aaaaaaaaa (imagine the sound of a person falling off a cliff).

But my father didn't say, "That was stupid, not ordering the insulin."
And my father didn't say, "So why are you eating a sandwich now?"
And my father didn't say, "You'll have to be more responsible."

My father said, "It's a good thing you manage your own diabetes, because I can't imagine doing such a good job managing it."