Today Joslin for re-do TrialNet OGTT. Last time BG >200 2h. pp. (Glucose syrup drink count as prandial?) Today after OGTT, Bigfoot TrialNet test subject no more. Instead, diagnosed Type 1 Diabetes. Whaaat?
Part is not surprise: failed OGTT last time + autoantibodies + no HLA. But part big surprise: thought August 1st OGTT must be fluke; A1c so low. (4.7!) Must be so specific coincidence TrialNet catch blood right at very moment blood turning into syrup? Seems impossible. But true. 8/1 OGTT #s same same 8/22 OGTT #s.
ENDOCRINOLOGIST: (ever so casual, unapologetic) Well, you are now diagnosed with type one diabetes, so you’re no longer eligible to participate in the TrialNet study
STUDY COORDINATOR: Excuse me, I just want to make sure you know you will be reimbursed 24 cents per mile for your drive up, and I can validate your parking
ENDO: We see adults present this way all of the time. It could be next week, or it could be five years before you need insulin
BFOOT: Five years, or maybe thirty years?
ENDO: Probably more like within a few years
BFOOT: But maybe not—like maybe I’ll die from something else first?
ENDO: Probably not, probably within a few years, based on your test results, but everyone is different
BFOOT: So what do I do?
ENDO: Nothing. I mean, you should eat a normal, healthy diet of course. Some people in your situation, I’d say mostly men, because they are afraid to take insulin, go on extreme carb-restricted diets. But if you need insulin, you need insulin. Don’t drive yourself crazy. If you need insulin, just say, “The time has come for me to use insulin.” And definitely get hooked up with an endocrinologist. And check your blood sugar periodically
BF: Should I just use my son’s glucose meter, or do I need my own?
ENDO: Just use your son’s**, and don’t check too often
BF: What endocrinologist would I see? I only know pediatric endocrinologists
ENDO: You could see me. Wait. Where do you live?
BF: Rhode Island
ENDO: I know a thyroid guy in Rhode Island; he will now someone, and I’ll get his name to you
BF: I think I’d rather come here. I have a friend–my age–who was just diagnosed, and his endo in Rhode Island told him he had Type 2, and he had to tell his endocrinologist about autoantibody testing, and the endo told him he was too old to have Type 1
ENDO: (shakes head with what-an-idiot implied)
BF: I know, right? So now my friend comes up here to see an endocrinologist, and so I think I’d rather do that too, because I’d rather just see someone who doesn’t need me to explain about my kind of people
ENDO: You can come see me when your son comes back for TrialNet next time. I only see patients in the afternoons, and TrialNet is always in the morning, but we will set it up so you can see me in the mornings while your son is here
STUDY COORDINATOR: It will be $28.46 in mileage, plus $50 for coming today
ENDO: Can you schedule that for her?
STUDY COORDINATOR: Sure. I’ll contact you later today
BF: Thank you, that would be very handy
Now Bigfoot home. Realize Endo/Bigfoot never introduce selves. No idea this man’s name. Where social skills go? Assume Doctor know Bigfoot name from paperwork, but now see paperwork name = “KAT” + secret TrialNet code number, for confidentiality/insurance company not kick Bigfoot curb.
Anyway, whatever name is, nice personality: humorless/kind, very science-y, also skinny-cute w. lush eyelashes, shoes possibly Camper.
Before diagnosis talk, Mystery Endo review Jack’s labs. Some Ab results still missing; TrialNet not reveal; Study Coordinator postulate maybe they are re-testing because the results were right on the cusp. Endo explain Jack positive for ZNT8 (<—include edifying link, but unable follow 80% of information therein), and pretty sure said this shows his disease has progressed from being merely outside of the cells to being within the cells. Bigfoot ask: So, is that like the worst one to have?
ENDO: Not worst
BF: Oh, right, for science you have to be non-judgmental, like there’s no better or worse, there’s just data? But it’s kind of the worst, like it shows…he has diabetes? I mean you said, “his disease”
ENDO: Right. His disease has progressed beyond the initial stage, but you can’t know if he will need insulin before he is an adult. He could present very much like you, because so far, at least looking at last year’s result, he did not have the autoantibodies for insulin, and the younger kids almost always have that. And his OGTT was indeterminate, meaning he was not stone cold normal, but also not yet showing clinically diagnosable diabetes like you
BF: So maybe he will need insulin when he’s in his forties?
ENDO: Well, it could be he will not need it until he is an adult
BF: So, I know you can’t predict, but when you’ve seen other kids with results like Jack’s, what’s the result?
ENDO: Usually within five years, but everyone is different
BF: And is it possible that he would never have it?
ENDO: (jist was something vague hinting that he sort of already kind of has it)
ENDO: That could be
BF: But you think probably sooner?
ENDO: Most likely. He, like you, does not have the HLA protective gene, which makes it even more likely, but again, we do not know when he will present
BF: But since he’ll be coming for TrialNet every six months, he doesn’t need to go to see his brother’s endocrinologist?
ENDO: Right. They would just check his A1c, maybe his glucose tolerance. When he comes here, we will check for everything.
So, treatment plan until January:
- test occasionally (Jack too)
- avoid cherry or lemon glucose syrups as a breakfast (this step recommended for all humanity)
- pay an extra whisper of attention to Jack instead of always assuming he’s fine
- figure out the doctor’s name (Lightbulb! Ask Study Coordinator)
- think of things to do (purchase huge life insurance policy?) before I get a black mark on my permanent record
One other interesting part is for one Ab test, doctor describe—eyes dance with delight—sprinkle (dribble? spread?) test subject blood on sliced cadaver pancreas—picture like mayonnaise on liverwurst, but human.
Other interesting part is so many capitalization problems. Just master mg/dL. Barely aware A1c not A1C. Now also: Type 1 diabetes or Type 1 Diabetes or type 1 diabetes? “Ab” = antibody or autoantibody? Need style guide.
(** Doesn’t that seem kind of bootleg?)