probably not the most scientific way to get an answer to my question but would really appreciate the experience of others for this. My daughter (15) dx’d 5 years (4 on pump) has highly variable levels. To put it mildly, we’ve applied every tool we have to identifying I:C ratios, basal rates, carb counting/weighing - basically, everything that we our our doctors know about, we’ve tried to bring to bear.
We have good A1C but at the expense of many hypos. She’s coeliac and hypo-unaware (always has been). We now use CGM in the hope of better reacting to changes. We’ve tried to find patterns but even when we suspect one and make small adjustments, it’ll last only fleetingly and we’re back to searching again.
We meet many others with similar A1C but who don’t even carb count or do corrections. Seems that we’re walking a much finer tight-wire than others and it’s hugely time-consuming. For example, yesterday a missed bolus of 9gCHO sent her from 4 (72) to 9 (198). It’s very unforgiving. We’re managing but it’s a minute by minute management and pretty relentless.
So… wondering if others find the same experience - that is, have similar high variability or find that others are just ‘different’ in terms of how they are affected by the disease. I’d also welcome any advice - I’ve read Walsh & Roberts’ “Pumping Insulin” many times and follow pretty much all their advice but I’m always open to new thinking.
Yes @raisinette, your tag “brittle” says it all - and if she is really brittle there isn’t much that you can do about that. But being brittle isn’t the worst thing that could happen to her - I’m living well and now in my 59th year with T1D. She may learn to accept the wild swings in BG levels and if she is able to “feel” when she is dropping low and take in some carbs she should do just fine; the highs will be caught by her periodic testing. As an Endo told me, “you are brittle and that is your life”.
A word of caution, do not over treat highs with insulin. Make sure that she periodically revalidates her insulin sensitivity [i.e., how much 0ne unit of insulin will drop her blood sugar] for various times of the day. As you probably have observed, brittle works both ways; it will cause my drop exceedingly low as often as it will push it high. During a 12 to 16 year period all my HB A1c tests were between 5.7 and 6.4 yet my test readings ranged from the 30s to 500. In the 1970’s I was part of the study “inventing” the A1c and my individual hospital / clinic blood sugar tests [this was before the advent of BG Meters] confounded the scientists because my range of tests did not correlate with expected A1c scale.
Stay in touch, there us much more about this that we could share.
thanks for the helpful words especially given your vast experience of living with T1D. I generally avoid using the word ‘brittle’ as I don’t think our docs like throwing it about - though I think they’re finally admitting that that’s where we’re at. I know this because they’re finally offering us the best pump & CGM. Our challenge is compounded by hypo-unawareness which has always been there. Still, we’ve used the latest CGM for the past week and it gives a glimpse of the future which is very reassuring.
Thanks again for the words,