#type 1 problems

For those who don’t know, I was in the ICU for a couple days earlier this week - diabetes related. ICU selfie! I’m doing better now though not completely out of the woods. Obviously it was awful, but it’s also interesting. Some of you may know I have a tendency to get every rare, weird condition or side-effect that one can experience, but this one takes the cake: they have to contact the FDA and do a case study. Yay, I’m special!
Anyway, long story short, I’m going to be fine, if you’re interested in the weird deets (my diabetic friends especially may want to read on), here they are:

My endocrinologist is always on top of the latest in diabetes treatments and tech. He even tipped me off to trying to get in the Faustman BCG vaccine trials. He is the absolute best endo I’ve ever had. My sugars are consistently just a little too high even with pump and CGM therapy, running between 180-250, with A1Cs between 7-8 mostly. There is a new trend of using type 2 drugs to help control difficult to control (sometimes called “brittle”) type 1, and my endo gave me the type 2 med Invokana to try. The resident he’s training is also type 1 and is on Invokana, and told me how much she loved it. On Friday 1/11 I took my first dose. My sugars instantly dropped to normal levels. The Invokana seemed great; it was keeping my sugars lower, reduced my insulin requirements by about 25-30%, and felt less aggressive than insulin.

Saturday things were still perfect with sugars between 80-135 all day, though I felt slightly fatigued. Fatigue is a known side-effect, though, so I dismissed it.

Sunday I felt a little weaker and more tired, and could smell a small amount of ketones in the back of my throat (ketones smell like a mixture of ammonia and fruit). My sugars were still perfect, hovering in the 120s most of the day. I was feeling somewhat queasy, so only managed to drink a V8 veggie juice. In the early evening I started experiencing more DKA symptoms, still with perfect blood sugars (and no other illness symptoms). In the afternoon I weighed myself and had lost about 4 pounds since the previous day – yikes. I did a keto stick test and was spilling the max amount of ketones, as well as a moderate amount of glucose. My reasoning was that I hadn’t eaten enough and so I was producing ketones. I ate some chili and crackers, felt a little better, asked my roommate (who was AMAZING through all this) to check on my later, and went to sleep.

At 11 my roommate checked on me and found me to be mostly coherent but sluggish and slurring my words. She called her father (who is a doctor, not just a random dude ), who reasoned the same as me: I hadn’t eaten enough, and so was going into ketosis despite normal sugars. He recommended I eat protein and sugar, and if I didn’t feel better go to the ER. After some juice and peanut butter I felt better and my speech was no longer slurred. I went to bed.

At 5am Monday morning I woke up and threw up pretty much everything I’d eaten the previous day. At this point the DKA was undeniable: short, labored breath, intense smell of ketones, and vomiting. My blood sugar was 95. NINETY FIVE! I asked my roommate to take me to the emergency room and was admitted to the ICU a few hours later. Poor, sweet Madison David will now forever have the image of me vomiting neon orange all over the Emergency Room floor imprinted upon her brain. 

Three days, two nights, five IV lines, and a shit ton of blood work (though thank god no catheter) later, I was out of DKA. ALL OF THE DOCTORS came to see me – listening to groups of doctors discuss your condition amongst themselves while you’re lying three feet away is always an experience – my unusual case inspired such phrases as “This is unheard of”, “We need to contact the drug company immediately”, “We have to do a case study on this”, “We’ll have to get in touch with the FDA”, etc.

I saw my endo yesterday (and maybe again today), who was extremely (though unnecessarily) apologetic – but like everyone said, it was unheard of, so there’s no way he could have known. He’s now in touch with the hospital, took more blood, and we’ll go from there. I’m still spilling ketones and glucose, and have lost almost 10 pounds this week – not water weight, either. So…Invokana was an interesting bust, to say the least.