Monday, December 26, 2011

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

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.

Sunday, December 25, 2011

The Gutenberg Project

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!

Thursday, December 22, 2011

Sorry, Mr. Southerland

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

Saturday, December 17, 2011

On Progress and Smells

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.

Sunday, December 11, 2011

A Stupid CDC and ICD code

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

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.

Monday, December 05, 2011

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.

Sunday, December 04, 2011

Rookie Sensor Mistake

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?

Saturday, December 03, 2011

My Parents May Have Saved My Life Today

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.

Thursday, December 01, 2011

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.