Goals

Well, at least I think it’s not H1N1 (swine flu), but it sure knocked me for a loop. I’d like to think it was more than a little cold that would do that, but I think that’s all it was - plus being run down generally. Kids and germs go hand in hand, it’s true. And infections throw blood sugar off course. Mostly, I think, it’s because I look, watery-eyed, at my meter and, with an equally bleary mind, think "200? That’s okay,” instead of “Wait, why is it 200? Oh, because I miscalculated how many carbs were in that muffin.” Infection is also supposed to increase blood sugar in itself, and I’ve experienced that, too. I think that happens partly when I’m overexerting myself when I should be resting, and my body kicks in adrenaline to keep up; and then I crash and I’m more sedentary than normal, so my blood sugar rises even higher (if I let it).

So, I’m slowly (it seems) getting back on track. Which leads me to thinking about goals. For doctors, the A1c (hemoglobin A1c) is the goal, because that’s what they can most easily measure. Generally, the goal is below 7.0 for most people with type 1, according to the ADA (higher if you have hypoglycemia unawareness or other concerns). As with most things health-wise, there’s a cost/benefit ratio, in that the lower you go, using insulin, the more likely you are to have potentially life-threatening lows. But you want to keep it low enough to avoid long-term complications. One place to find their discussion of this goal: http://www.diabetes.org/for-media/pr-ada-statement-related-to-accord-trail-announcement-020608.jsp. It’s about a clinical trial comparing patients who had A1cs between 7 and 7.9, and those with A1cs below 6. It turned out that those below 6 had an increased risk for death compared to those with the higher levels, and it had nothing to do with having more hypoglycemia (they’re not sure what it was related to). But apparently, the study participants were all middle-aged and older and had other cardiovascular risk factors, so the findings might not apply to, well, me, or folks like me (just as most of the studies of statins in people with diabetes are in middle-aged and older adults - but that’s another diatribe!).

The problem with the general goal is that it leaves both patients and doctors without much guidance. It also ignores the fact that technology - insulin pumps and continuous glucose monitors - can help us aim lower with fewer risks. But how do doctors judge how to advise their patients? My own, for example, says that around 6.5 is “fine.” And that’s where I’ve been for quite a while. But my experience with pregnancy -- when the goal was lower, around 6.0 or even lower, if possible -- made me realize that I can aim lower. I was at 5.8 for much of the pregnancy (it went up to around 6.3 right at the end). Now, all the experts say that I was just extra-motivated, and that might have played a small part. But it was also the extra help I had, mostly from my excellent pregnancy endocrinologist at the Joslin, Dr. Florence Brown (full disclosure: She wrote the foreword to the book I mentioned before, When You’re a Parent with Diabetes). She helped me figure out how to adjust the pump settings based on my readings, in a way that I’d never had before. Basically, the constant changes of pregnancy provided an intensive training opportunity, and she deftly helped me sail that high sea.

The biggest piece of the puzzle came from using a continuous glucose monitor. The monitor detected lows (with some technical glitches, in a now-outdated version), which was crucial because I had developed temporary hypoglycemia unawareness. But most important, it showed me what was in the “black box” of the night - what my blood sugar was doing while I slept. Traditionally, no one does much examination of that period, yet it’s always been a problem for me, and I bet it is for a lot of people, just because it’s a long stretch of time that we never examine. Before I went on the pump (around 2000), I would go low overnight a couple of times a week. I would always wake up, but maybe that was worse, because I’d eat and then end up with a high in the morning. Once I went on the pump, I no longer had lows overnight, but I still had trouble with highs in the morning, though not quite as high.

Well, it turns out that my blood sugar was doing a roller-coaster overnight: up, then down around 3 am, then up again toward dawn (the well-known dawn phenomenon). Once I had used the continuous monitor a couple of nights, I figured that out, and it was a pretty consistent pattern. I made some pump-setting adjustments, and voila! I have had great morning readings most mornings since, even after pregnancy. I highly recommend analyzing the overnight period - and not just with one or two checks. I did that years ago -- around 3 am, as was recommended at the time -- and that only showed that it was normal, which gave me no clue about the swings.

Which brings me back to the A1c goal. I think there’s a limitation to the A1c, in that it doesn’t distinguish between blood sugars that are always within the ideal range and those that swing around the ideal. So if I go to 200 one time, but then go down to 40 a couple other times, the A1c will read the same as if I’d been at 93 all three times (just to give a hokey example). It’s the many-times-daily checks (or, better yet, the continuous checks) that tell us what’s really going on. My doctors would always compliment me on my control (when my A1cs were considered good, which was most of the time, though before the pump they were never much below 8), but I would always say, “Well, what about the highs in the morning?” (or the lows at night). Various doctors and others tried to help - for example, suggesting eating Night Bites before bed. These are snack bars containing just the right amount of corn starch, supposedly, to keep blood sugar steady for a long period. It might have helped a little, but it didn’t solve the problem, because the swings were (unbeknownst to me) so extreme. It was figuring out how to get on a more even keel overall that allowed me to lower my A1c.

Now, I have the chance to use a continuous glucose monitor again, this time one that synchs with my pump, and supposedly is much more accurate than the one I used before. So we’ll see if I can aim a little lower. My only concern is having more hypos, especially when I have a daughter to take care of. But the continuous monitor should help detect those. I also have to see if I can keep my daughter from kicking off the probe - I don’t know if that’s the proper technical term; the metal filament that goes into the abdomen, and the part attached to it that sits on top of the abdominal skin and transmits the readings wirelessly to the monitor. Unlike the pump infusions sites, the monitor probe (thingy) has to go on the abdomen. I’ll also have to see if I can find the time to analyze the readings and adjust the pump settings accordingly. I haven’t even found the time to order the device yet! (What was that bit about motivation?...)