Brief GI Update

I saw the GI doc. I like him and his nurse but not the way his office is run.
I don't seem to have lost weight. I came in at an even 100 lb. My blood pressure was 120/80. Since the only reason I'm not on an ACE inhibitor is that I've had a bunch of low blood pressure readings, and since the last few have been normal range, I'm wondering if I should start on one. I think not yet. I was in pain at the time so maybe the readings will drop back down if we successfully treat the pain.
The GI doc strongly suggested an upper endoscopy, which I scheduled for the 16th. He also suggested an MRI of my abdomen, which I'm holding off on for now.

Twelve years ago...

Late Friday night, after coming home from services, I sat in what used to be my younger brothers' bedroom reading. There are still toys of theirs and boxes of their stuff in the room. I read there for a while and then got up to find a more comfortable place to read. When I stood up, I felt something clamp around my foot, so I reached down and plucked off from my foot the top of a broken toy truck, the bed of which I'd stepped in.

I flopped down in the hallway outside the room and resumed reading. About a chapter later, absent mindedly running my hand over my foot, I felt with my hand a flap of skin hanging. I felt nothing on my foot.

Upon closer examination, I had a small cut on my heel, about a centimeter long, that had apparently bled quite a bit, with some swelling. I washed it and was relieved to feel some sting as I ran it under the hot water of the sink.

As I thought about it, I realized that:

Twelve years ago, when I was ten, I would have felt proud to not really feel the cut. My high tolerance from pain was a point of pride, particularly as the two brothers closest to my age both shrieked at the littlest things. Yes, my ten year old self would have strutted with pride.

Six years ago, when I was sixteen and had only recently gotten out of occupational therapy, I would have chalked up the lack of pain to sensory integration dysfunction. I was a mixture of proud and jealous of my sensory differences then, sometimes feeling secure in the knowledge that I was harder to hurt at one level, and other times afraid of all the things I was aware that my toddler brother could react to that I could not.

Now I am twenty two, over four years past diabetes diagnosis, and over a year past a neuropathy diagnosis. A wound on my foot that I cannot feel is a scary thing, although in a real sense it feels abstract. I see it- but I so much can't feel it that when I looked for it to describe when typing this, I looked first at the wrong foot. I don't know whether to chalk up my lack of feeling for the injury to neuropathy or not, to diabetes or not. I do know that I need to take care of it to prevent infection.

I've had an awful blood sugar day- bounce bounce bounce. I woke up to a graph that looked like I'd just fallen from 140 to LOW in the space of half an hour. It took about 50 minutes to come up and then I went up up up. And then down down down for an hour in the 40s. Unfortunately my brother's babysitter didn't show up so I ended up taking him out for the walk he'd anticipated having with her and I didn't wear the best foot gear and got my feet wet (oops).
I always figure that when you're bouncing up and down repeatedly the best thing to do is take it easy on corrections. Let the highs drop a little slower while you figure out what the heck is going on. So when I bounced up in the 200s about four hours ago I took only two units. And then waited and waited. And took two more units. And now I'm in the 300s.

I woke up with ???s this morning and took the sensor out. It itched anyways; it was in for sixteen days. Ate breakfast, took a bath, scrub scrub scrub, and put a new sensor in- upper left arm. It stung a bit but is working fine.

I talked to Guadalupe at Dexcom, who is putting through my "appeal" to insurance. I'm putting appeal in quotes because there was no original decision to appeal. She says I'll probably have coverage by next week- with the letter of medical necessity plus records from the use I've already had on Dexcom. I then have a $200 DME deductible, and am covered at 90% after that unless I spent a thousand on DME, after which I'm covered at 100%. What we already spent is probably not going to get reimbursed but she sent me a file with the record that I can try to print out and get reimbursement for. So that's good news.
And while I was on the phone anyways, I talked to tech support, which really just seems to send me replacements- so far they haven't offered much support- and told them that my case - the zippered one- has a big crack in the clear plastic part so they are sending me a new one.

I'm feeling better GI wise which makes it somewhat more difficult to figure out what to talk to the GI doc about. I have about four different abdominal pain issues, or at least four constellations of pain symptoms around my abdomen (and sometimes thorax). And I want to know what causes them, and if he can make them go away, and what my future holds. And I also want to know if I should be concerned about my weight. And if there's any kind of diet that might help.

Sensor Error 1?

So my 12th sensor is on its third week. I restarted it this morning. It was starting up fine, I went and took a bath and when I got out it had ??? showing. I took it with me to work, kind of ignored it, took a look at some point it was asking for blood. So I put in a reading- 87. It said ERROR 1. I put in another reading- 95- because I didn't know what else to do. It continued saying ERROR 1 and showing pictures of a sensor being inserted.
After about an hour and a half of that, I hit Stop Sensor and then Start Sensor and in two hours it let me start up with no problem.
Having come home and looked at what a Sensor 1 error is, I'm still confused. This is suppose to happen when the blood sugar is way off of what the Dexcom figures from the previous calibration- but this was the first calibration!

I just calibrated it again (about 8 hours since it started giving readings again) and the meter said 144 vs the Dexcom 178, which is significantly off but not all that bad- did not provoke any error readings at least. I think the test strips I'm using right now aren't so great and maybe I should use a different batch to see if I get better consistency.

And I have another (small) Dexcom problem, which is that I was planning on site rotation, arm to abdomen to arm. Sensor 10 went on my arm. My plan was that sensor 11 would go on the abdomen, and I'd stop using it a week or so before my GI visit, and then sensor 12 would go on my arm and be there during the GI visit.
But sensor 11 on the abdomen stayed only a night, and sensor 12 on my arm will be on its 22nd day if I wear it to the GI visit. So the question is, do I put sensor 13 in an arm and screw site rotation? Do I put sensor 13 in my abdomen and hope that doesn't bother the GI doc too much? Do I try and stretch sensor 12 past 21 days? Do I wear sensor 12 as long as it goes and then go without a sensor until after the GI consult? Do I try a sensor somewhere else, like my butt or my calves?

I'm hoping for insurance coverage to make the matter of sensor stretching less important (need to call people tomorrow about that). But that may or may not happen.
I'm hoping this sensor is going to last but I want to pull it out as soon as it becomes uncomfortable and to not worry about doing things that might make the adhesive come off.
I want to do site rotation- I'm concerned about the red bumpiness of my arms. But I'm worried about an abdomen site anyways because my abdomen is not very pinchable at the moment.
I want to reserve my butt for Lantus and my calves for injections in public places. But in the grand scheme of things, I'm not sure that either of those things is important.

James McManus, attitudes, and milk

Back in 2006 when I was a newly diagnosed diabetic, I read a book by James McManus, Going to the Sun. It had come up in my university's library catalog when I looked for information on diabetes and travel, and it was a fiction book, a first person story by a woman whose blood sugar goes to 20 on a first date in one of the first scenes, which at the time seemed very unrealistic to me (a few months later when my own blood sugar starting dropping to the 20s without symptoms or warnings it stopped seeming unrealistic). The protagonist is angry at life and very resentful about diabetes- the shots and blood sugar checks and the long term health prognosis. At the end of the book, it seems that she commits suicide.

I learned a bit more about the book later. Talking to a librarian who ran a discussion group that had read the book, I learned that McManus is a local author- he lives within a few miles from me- and that the ending of the book is more ambiguous than I thought, and whether the protagonist does or doesn't commit the suicide she is contemplating at the end of the book was a hot topic in the book discussion. McManus has a daughter with type 1 diabetes- she was diagnosed at the age of 4 and went to the same children's hospital that I did, twenty-some years before me. I thought I'd be pretty upset about having a father who wrote a book with someone like me as the protagonist if that protagonist committed suicide at the end of the book, and wondered about the stories behind it.

So when I realized that James McManus had written a nonfiction book about American healthcare, Physical I thought I'd take a look and see if it helped me figure that out. I thought it was relevant that McManus's son- a euglycemic sort of guy- had died in a possible suicide. But it also seemed that he and his daughter do think of diabetes as being pretty horrid (not without reason- she developed proliferative retinopathy as a teenager) and they focus a lot on the downs of diabetes and hope for a cure (in embryonic stem cell research specifically).

But what was catching my attention was what McManus attributed his daughter's diabetes to. Twice he says that "her immune system suddenly attacked the islets of Langerhans in her pancreas, mistaking them for bovine serum albumin in cow milk protein." I thought that was a bit odd- was there any diabetogenic antibody that was known to attack bovine serum albumin?

Milk has been proposed as a trigger for type 1 diabetes, and in March 1989- right around the time McManus's daughter was diagnosed- a paper was published entitled "Could bovine serum albumin be the initiating antigen ultimately responsible for the development of insulin dependent diabetes mellitus?" This theory had been thought of as early as the 1960s and in the late 1980s and early 1990s gained steam.

Evidence exists. Children who were breastfed, rather than getting milk based formulas, have roughly two-thirds the risk of developing diabetes compared to those who were formula fed- a significant but not extreme reduction in risk. Some studies found higher rates of bovine serum antibodies in type 1 diabetics- other studies didn't. Even when slightly higher rates were found in type 1 diabetics, some people argued that this didn't prove that the antibodies caused diabetes. Type 1 diabetics, after all, are more likely to have thyroid antibodies as well- it's because we are more likely to have antibodies generally, not because thyroid antibodies cause diabetes. Milk protein antibodies at some level are present in about half of American adults, most of whom (obviously) do not have type 1 diabetes. Therefore, even those people who felt that BSA antibodies might be diabetogenic sometimes argued that testing for them was not worthwhile- because too many people have them. You can't guess somebody's diabetes status very accurately from the test. As markers for diabetes, they were deemed "neither sensitive nor specific", which is to say that many diabetics don't have them, and many non-diabetics do.

While the milk theory has not been thrown out, I think the evidence points to milk as a minor player in the cause of diabetes, and not as a soloist causing diabetes.

I myself did receive milk based formula as an infant in addition to breast milk, because my mother was working full time. I became a vegan at the age of eleven years but was a faithful milk drinker prior to that, and I think that whatever caused my diabetes had probably been set in motion well before I became vegan- my first diabetes symptoms showed up when I was thirteen.

Technosphere Insulin, Updates

Remember I posted about an inhaled insulin that is being studied, Technosphere Inhaled Insulin? It is apparently being given another name, Afrezza, and it just got rejected by the FDA. Not like the FDA told it that it was no good, go home, but rather try again with a different inhaler.
The stock for the company started falling before the company released the news that they hadn't gotten FDA approval, which may mean some illegal stuff went on stock-trading wise, and ... I don't know.
Reading about the insulin made it sound like technosphere is actually expected to be more fast acting than any of the current insulins on the market, which is intriguing.
Here is the website of the company, Mannkind

In the Jonah news: I started teaching chess for the winter yesterday. The home share thing is moving slowly and I have an interview with the match making person in one week. I have an appointment with a GI doc for the last of the month and I'm trying to figure out what I want to ask. I have a hard knot on my leg that I at first assumed was from a shot but am now wondering if it could be a bug bite of some sort. I've been realizing lately that my I:C and ISFs were both too low (too much insulin) and that my carb guesstimates were tending to be low as well. So I need to count better and more often.

Effects of Testosterone on Insulin Sensitivity

Since there was a comment about wondering how the testosterone affected things:

I went on testosterone in November 2007 at a dose of 200mg per 2 weeks. My overall insulin needs increased in the following months, although gradually enough to keep up with them, by about 25%. In April 2008, I lowered the dose to 180 mg per 2 weeks because I wasn't liking the feeling of the dose; my doctor said it didn't matter.
In July 2008, blood tests revealed that my testosterone levels were well above the male range, and I dropped my dose from 180mg per two weeks, to 120 mg per two weeks. In the following weeks, my insulin needs fell dramatically. The Lantus needs dropped by more than half, and the Novolog needs decreased a little bit.
In January 2009, my testosterone levels appeared to be almost as elevated as before, and the dose was dropped to 80 mg per two weeks, and my insulin needs fell even further.
Since then, I've gone up and down on the testosterone. When I've gone off of it entirely at gallbladder times, I've seemed to need a little bit more insulin, but changing the dose within the range of 40-70 mg per two weeks doesn't seem to matter as far as my insulin needs go.
When my insulin needs change, the way my insulin needs have been higher in the past month, testosterone levels are something I wonder about as the culprit.

Among women, higher testosterone levels, as in diseases such as polycystic ovarian syndrome and adrenal hyperplasia, are associated strongly with insulin resistance (higher insulin needs).

Among men, testosterone levels in the upper normal range are associated with the most insulin sensitivity (lower insulin needs), and having testosterone in the bottom or below normal is strongly associated with type 2 diabetes. Having testosterone above the normal male range is also associated with insulin resistance.

My theory, then, is that there are two sweet spots in terms of testosterone levels that bodies like. Prior to taking testosterone, my levels were not in either the female nor the male normal ranges- my testosterone level was about twice the upper end of the female normal range, which still put it at less than a third the bottom of the male normal range. I assume that caused insulin resistance.
When I went on testosterone, I initially went from a testosterone level that was between the sweet spots, to one that was too far above the male range and therefore not much better as far as my health was concerned, but dropping the dose has landed me solidly in the upper end of the male range- an insulin sensitivity sweet spot.
But that's just a theory.

Changes

One of the harder things for me about living with diabetes is that my body is not consistent. I don't have the same insulin needs regularly. I don't digest my meals in the same speed or to the same extent twice, even if it's the same damn meal. My hormonal response, and therefore my blood sugar response, to various stressors vary a lot. So first of all, I have to look for patterns in numbers that are not usually very pattern like. And I have to be willing to make adjustments over and over and over and over again. And accept that my hard earned data will be worth less and less as time goes by.

So I find some patterns. I pick the carb ratio that looks like it would have worked best for the previous days. I pick the Lantus dose that looks like it would have worked best if I combine yesterday's insulin sensitivity and tomorrow's activity. I check and see what happened when I tried what, months back.

Things change on a day to day little scale. I have a really hard time answering questions about how much insulin I take. Some days in the past four years I've taken as little as three units of Lantus. On others I've taken as much as forty. Doses that actually were working for me varied from about four units to forty units. That's a huge spread.

And that does a wonderful job of masking the fact that things change for me in diabetes management both on a seasonal scale- I need more insulin in the winter- and simply as time goes by.

Some of the changes are fairly easy to notice. At least once per month I make a note of how much insulin I've been using. My Novolog use has varied from month to month, and it varied more initially, but not all that dramatically. Most months I've use 20-30 units of Novolog per day. The Lantus use has varied a lot more. Two things have clearly made a sharp difference. One was the testosterone dose- my Lantus needs but not much of the Novolog needs changed sharply with changes in testosterone dose- and the other was switching from AM Lantus to PM Lantus, which cut my Lantus needs by about a third (without raising my Novolog needs noticebly).
My current insulin use is lower than it was when I was diagnosed, which I attribute to having been diagnosed as a non-honeymooning teenager.

Some of the changes are harder to notice. One thing I've been wondering about lately is that exercise no longer seems to affect my blood sugar. It certainly doesn't make the dramatic difference in my overnight Lantus needs that it used to, but it also seems that most of the time it doesn't affect my blood sugar at the time. It used to be that taking a brisk walk or running would dramatically lower my blood sugar. Now it seems that it might maybe affect it a little bit. Sometimes. I tested this yesterday- I left at 5 PM with a blood sugar that was pretty stable at 226 on the Dexcom, with no Novolog or food taken in the previous three hours, and walked two and a half miles in snow in thirty five minutes. My blood sugar at that point per Dexcom was 209, which is a drop of 17 mg/dl. Not really impressive. My blood sugar another half hour later of sitting, per Dexcom, was 197. My blood sugar continued to drop during my meeting and was down to 165 two hours later when I decided to walk another two and a half miles, at the end of which walk I was up to 178. So that didn't really answer my question of whether exercise has been affecting my blood sugar, and I intend to be paying more attention to it soon.

Drinking

One of my goals for 2011 is to start drinking. Not, like, heavy, 22 year old drinking- but like a drink with a meal once a week or so. When I was diagnosed with diabetes and the myriads of doctors asked if I drank, I said I drank a couple of times per year. But in the years since I was diagnosed with diabetes, every time I've been just thinking about it, my blood sugar goes haywire and I reconsider.

On New Year's Day I started on it by accident. I was a guest in somebody's home and there was lots of wine and some grape juice, I thought I was being served grape juice but got wine. I noticed nothing in my blood sugar.

Friday evening when my brother brought home a bottle of wine and poured himself some, I passed him my cup. I drank about two ounces of wine. Since I thought it tasted terrible, I diluted it with a lot of water. It made great tasting water. I didn't really notice anything unusual about my blood sugar, although who knows?- it's not like my carb counts of the evening were accurate. My blood sugar was not particularly high or low that evening though.

One thing I am wondering about- there's no nutrition information on wine bottles. Just an alcohol %. So how am I supposed to figure out the carbs? From what I understand, not all of the sugars from the grape juice will be converted to alcohol, and grape juice has lots of sugar. And presumably different wines, with different alcohol levels, will have different amounts of sugar... right? I dunno.

The sensor, BTW, did not start working and I'm about to go call Dexcom.

Sensors 10 and 11

Sensor 10 on my left arm performed well in the first week, excellently in the second week, just as well in the third. The adhesive started getting bad and I think the sensor may even have come out of my arm before going back in at the very end of that week, and then I band-aided it on and started it for a fourth week. It continued to perform very well but it got itchy so I pulled it tonight, not quite at 24 days. I think it was probably high time as the area is swollen.

Then I took a bath and scrubbed, scrubbed, scrubbed, and then I had my mother help me put in sensor 11. I chose to put it in the left side of my abdomen. It was the first I put there- I was concerned about some scar tissue I have there, but I was thinking that it really isn't very much scar tissue- neither of the scars on my side there are as large as a thumbprint- so I could easily put the sensor someplace else on the abdomen. Then when I was actually trying to pick the site, and after I'd put the adhesive on but the needle wasn't in, I started to feel panicked about how little fat is there. I mean seriously, there's nothing to pinch there that I can't flex. But we went ahead and inserted the sensor, it didn't hurt really, I told the receiver to start sensor, and in 20 minutes I had a failed sensor. I tried telling it I put in a new sensor and this time it took 35 minutes for the sensor to be declared a failure.

I decided to wait until morning and try it again, and if it fails again, to call Dexcom and demand a replacement. I mean, how is this for irony- it's one of the few sensors I've worn in the recommended position and it's the quickest failure of the lot! But then, maybe it will work later.

Insurance Policy Change

My insurance changes its policies a lot from year to year and this year, as of the 1st, it has changed the CGMS coverage policy to include those of us under 25! Hey wow!
Unfortunately it still has a requirement that people have used a CGMS under doctor supervision, which may mean using an I-Pro. Which I can do if necessary. I will have to get the ball rolling and find out.

If you have a BCBS policy, and don't think you have coverage for CGMS usage, you might want to check again.

Here is the link: http://medicalpolicy.hcsc.net/medicalpolicy/home?ctype=POLICY&cat=DME&path=/templatedata/medpolicies/POLICY/data/DMEQUIPMENT/DME101.005_2011-01-01#hlink

Huh?

I just had to post- I calibrated the Dexcom and my meter said 118 and the Dexcom said 118 and when I told it that it immediately changed to 112.
I really don't get how the Dexcom is programmed.