So, we’re getting close to two weeks of this experiment — I’ve been counting each carb, measuring each insulin dose, and trying to figure out some scientific approach to diabetes management. I keep wanting to write a blog post about how I’ve had a breakthrough: that I’ve figured out how to bolus perfectly for a banana, or that I now know how to eat sandwich as long as I can tell how many carbohydrates there are in the bread. In other words, that I’ve rediscovered how to eat breakfast.
But I don’t. Yesterday I went to the doctor to ask about what I should do about my boluses, since I’ve spent more time high this week than over the previous month or so combined. I was thinking she’d probably want to bump up my bolus rates, since my incredibly reduced basals do seem to be holding me steady when I fast. But instead, she asked if I’d consider stopping Symlin.
Anyone who’s been following this blog knows how much I love Symlin. It replicates a human hormone called amylin and its main results are to slow the emptying of your stomach, and prevent your liver from dumping stored glucose into the blood. The result is that it smooths your blood sugar after meals. It also happens to have a pleasant side effect of making it much easier to lose weight — since I went on it in September, I’ve lost 10 pounds, no effort required.
I also have had, I thought, really good blood glucose control. Very few lows, no dramatic spikes (high blood sugars, sure, but not the jagged peaks that my body usually goes through on its own). My last A1c was excellent. So for a variety of reasons, I am very reluctant to give up on the Symlin (not the least of which is that I just spent a huge amount of money out of pocket on another three-month supply). I also already know what happens when I don’t take Symlin: my blood sugar starts peaking before I get up from the table. And then I’m hungry, and want to eat more.
But I did understand what she was saying: Symlin is an added variable in an already complex situation. Perhaps by taking it out for a while, we could establish some baselines to work from. And, to her great credit, she also told me that she wasn’t sure how long I wanted to keep doing these experiments for. I agree — I’m actually amazed by how long I’ve stuck with it. I think part of it is that I feel too paralyzed by uncertainty and confusion to go back to my former routine.
But anyway, yesterday I didn’t take Symlin for lunch. I also deliberately ate a meal with carbs — a sandwich from the hospital cafeteria that had 34 grams in its bread. (I know because I asked the guy at the panini counter if he could find the nutritional information for me — resulting in an misinterpretation where he thought the reason I wanted to know the carb count was because I had “washboard abs” [which I don’t, and which was a very unexpected question on his part.] It was a very odd exchange.) Anyway, I ate the sandwich, took 3.4 units just as I ate it, and then realized something unfortunate: I was still very hungry.
I couldn’t eat anything that didn’t have nutritional information, so I wandered around the hospital cafeteria for a while, totally clueless as to what else I could eat that had a measurable amount of carb and then stumbled on something I usually never would have given a second look: the vending machine. Oh yes, the land of sun chips and doritos and candy bars. Hell, even if I were NOT diabetic, I would never stop at the vending machine.
But yesterday I did. It probably had something to do with my frustration at having spent 10 days unable to eat my normal food, the hunger in my stomach, and the fact that I had been explicitly told to consume more carbohydrates. And, as could be expected when all those variables collide, I made what I knew even then was a very bad decision: I bought a bag of yogurt-covered pretzels.
You know what I’m talking about. The ones where “yogurt” is actually a euphemism for “frosting”? According to the bag, there were two servings (5 tiny pretzels each) for 42 grams of carb total. Again, usually I would have had one pretzel and stopped there. But yesterday, I decided to fuck it. I had no Symlin. I was hungry, frustrated, and angry. I felt resentful at the idea that I should be eating more carbohydrates. So I counted every pretzel in the bag to confirm serving size (there were 11 total) and then ate the whole thing, taking 4.2 units to cover it, thus dutifully following a 1:10 ratio.
In retrospect, it was a somewhat masochistic move, since I know full well that a bag full of frosting-covered pretzels is right up there with a gallon-sized Mai Tai in foods I should not be eating. And that hunch was quickly confirmed as I watched my blood sugar begin to rise. Within an hour and a half, my CGM said 249 with an upwards arrow; when I actually did a blood sugar test to check, it was actually in the 340s. Yes, the 340s. I never go into the 300s. This was bad. And it was making me feel sick.
I ended up taking a 3 unit correction bolus and walking around the block for 20 minutes which quickly began to work *too* well — I was 199 by the time I caught the bus back to downtown, and by dinner time, I had plummeted to 63. It was my husband’s farewell dinner from work so I didn’t have a good way to count carbs (yet another moment when life and diabetes collide). So I ate two glucose tablets, had two small slices of focaccia, and watched as my BS climbed back up to 202 by the time we sat down for dinner.
It was pretty awful. I managed to get things under control by the time I went to bed, but this morning has been no more encouraging: I ate my 6-ounce banana with peanut butter and no Symlin, took the recommended dose, and was 250 an hour and a half later. I’m still waiting to come back down (I’m trying not to take a correction bolus till lunch).
I really don’t know how much more of this I have left in me. I feel physically sick and emotionally exhausted. I’m also completely confused, and worried that whatever intuition I used to have is now gone, thanks to my newfound attempts to carb count on top of a drastically different basal regimen. (I do think my afternoon basals were too high, so I don’t want to just go entirely back to what I’m doing before.) I feel like it’s worse than when I was originally diagnosed — I mean, at least then you’re in your honeymoon period and have a bit more leeway about getting your doses perfectly right. I honestly feel like I cannot eat lunch. I have no idea how to do it. There is a tortilla sitting in front of me right now that I know has 28 grams of carbohydrate, and I am terrified to eat it. I also haven’t really exercised since last Monday, since it’s just screwing me up even more.
I’m very interested to hear other people’s thoughts and experiences on this. I’ve really appreciated your comments so far, and am particularly interested in what people find their own personal balance to be between intuition and calculation. I was worried I was relying too heavily on the former, but now that I’ve spent nearly two weeks being analytical, I feel like I’m going to revert back to a George W. Bush approach to diabetes care: relying on my gut.
Matt, the same thing happened to me! It was all so wonky and frustrating at the time and it drove me nuts that I would have to rip out the site in order to even see if that was the problem or not. Find me a way to detect kinks without having to remove the site! I find that my body is pretty resistant to site changes and I have to put the site in (but not connect to it) the night before to allow the immune response to die down. Same strategy that kind of works with DexCom sensors. … Read more »
Hmm. Well, that does sound like a plausible theory about pre-dinner lows. Those persistent highs are so weird, though. One other possibility that you might consider is whether there could be some relatively mechanical issues with your infusion sites, because with your highs it almost seems like you’re not getting insulin delivery at all at times. At one point a year or two ago, I had been using Minimed Quick-sets for a few years and had been pretty pleased overall. They have a 90-degree insertion angle. But suddenly I began developing a crazy number of persistent highs, along with more… Read more »
I’m another Symlin fan (though I can’t quite use it consistently for lower-carb lunches and dinners, it’s a must at breakfast and in fact is the only thing that has ever solved breakfast for me) and I’m wondering if you’re going to put Symlin back into the equation. Personally I would have been inclined to run the whole experiment using my new, Symlin-normalized digestive process, not take away the Symlin and try to make the numbers work with my broken, spiky system… I’m curious how experienced docs like yours present the “Go forth and eat more carbs” suggestion to someone… Read more »
Matt, Thanks so much for such a thoughtful comment. I’m in the process of doing what you suggested — I’m taking some of their suggestions into account and trying to recreate my own bolus rates based on those. To answer your question, my basals right now (post-change) are running between .25 (in the afternoon) to .45 in the morning. Previously, I believe the lowest was .4 and I was spending most of the day/afternoon at either .8 or .9. Having examined my typical afternoons more closely, I think the doctor was right: I tended to get stuck high after lunch… Read more »
Catherine, I’ve been reading your posts about this experience and want to thank you for writing about it. It captures in words much of the frustration and unconscious energy that we all spend in struggling between control and detachment. Thanks for the good writing and your courage in sharing it. My self-care is always moving back and forth on the spectrum of calculation and intuition. I’m almost convinced that there’s no other solution. The problem of diabetes management is too complex to be solved, so the best I can expect of myself is to have times when I’m very focused… Read more »
Wow. That fucking sucks. I have to say my first thought is pretty simple, which is – after 10 days of experimentation hell, it seems like you should go right back to your routine before. There are so many carefully balanced variables in the diabetes equation. Messing with any one of them can be tricky, but in your case you (understandably, and with good intentions, obviously) have changed basals and now symlin. Maybe that’s too much at once. I have to wonder about the basal change to begin with. If you said that you’ve had decent A1cs at the… Read more »