-
Worsening reactive hypoglycemia
I’ve experienced reactive hypoglycemia for as long as I can remember. For the most part, I’ve been able to manage it with diet: making sure I eat the appropriate things at the appropriate times, carrying snacks with me in case of a sudden low, etc. Throughout the years, the issue has waxed and waned, sometimes lying low and other times rearing it’s ugly head. I’ve never been diagnosed with CFRD, just this inconsistent (yet consistently annoying) reactive hypoglycemia.
When I started Trikafta, things seemed to calm down. For months, I didn’t experience a single symptomatic low. During an entire month of watching closely, I only dipped under normal blood sugar levels once or twice, and even then, barely so. But now, all of a sudden, I’m having more issues than I’ve had in a very long time. I’ll have sudden dips in blood sugar that leave me confused, shaking, on the verge of passing out. This happens even when I’ve prepared well (being sure to balance carbs with protein, not going for long periods of time without eating) and hits so suddenly, that I’m quite literally stunned.
Turns out, I’m not the only one. One of my good friends with CF is experiencing almost the exact same symptoms on the same timeline (we both started Trikafta, felt like things were better, and are now experiencing worsened symptoms roughly 1.5 years after starting the drug).
Of course, I have spoken with my team about this and we are working on solutions. It’s hard to hypothesize what the cause is, and my friend and I could be experiencing the same thing by pure coincidence, but I’m curious if anyone here has ideas, thoughts, or guesses (which will of course, not be taken as medical advice). Also, whether you are on Trikafta or not, do you have CFRD or hypoglycemic issues?
Log in to reply.