DX'ed in 1983, or: 3 Regimens and Counting

I was 28, in grad school at the time, and it was getting on toward the end of fall term. Back in October I’d had a nasty cold that had dragged on for a couple weeks, and after it cleared up I started feeling just generally like crap. Draggy, nausea, headache, like a hangover that never goes away but keeps getting worse day after day. Then this other thing, which I didn’t even think was related: why was I so thirsty, and urinating all the time? Something wrong with my bladder? I told myself it was all just end-of-term angst, but my wife noticed something was wrong, and in truth the feeling-awful was getting more acute, as was the apparently unrelated peeing/thirst thing but neither of us put two and two together. Finally she mentioned it on a phone call to her Mom, who was an occupational therapist and worked in nursing homes. “That sounds like diabetes–get that boy to a doctor, stat!” Cut to the chase: the next a.m. I was in my doctor’s office and he was explaining to my wife that “if you hadn’t brought him in, in a day or so you probably wouldn’t have been able to wake him up in the morning.” His exact words to me when he came in with the lab results had been, “You are the proud owner of juvenile diabetes.”

Apparently I was quite lucky in my choice of PCP. He explained that I would have to take insulin from that day on, for the rest of my life. He also explained that “juvenile” was a misnomer, it wasn’t particularly odd that I was getting it at my age and that was why they were trying to get people to use the Type 1/Type 2 designations, but it does still say “juvenile type” in my records.* Since getting linked up with the DOC I’ve heard over and over of people even in this day and age getting mis-diagnosed T2 primarily because of their age–an absurdity given that the whole point of using these designations instead of the old “Juvenile” versus “Mature Onset” was to do away with that confusion.

Anyway, back in those days the standard treatment was the old R/NPH regimen with a sliding-scale, “exchange” diet system of managing dosages, usually one combined shot a day, sometimes followed by a second R dose for evening, at least in my case. This was an improvement over the previous Lente, 1-shot-per-day regimen but not by a lot. Still animal insulins at that point, though Humalin came along some time in there. It was several years before glucose monitors were common (we used Diastix–cut 'em in half to double the number! hours of fun!), so getting a One-Touch was my first experience of a tech-driven change in the quality of D-care. Somewhere toward the end of the 90s I heard about this new basal-bolus MDI thing from a T1 I ran into at a party (no DOC back then; this guy was the only other T1 I’d met, let alone had a sit down talk with, since being DX’d). But despite wanting to learn more, maybe give it a try, I was trapped in the “You’re doing ok, let’s not change anything” straightjacket by my non-specialist HMO PCPs, whose minimal experience with T1 made them cautious, not to mention referrals to specialists were discouraged.

Finally got out from under that when we changed to a health plan affiliated with BIDMC and Joslin here in Boston. “You’re doing ok considering that what you’re doing doesn’t make any goddamn sense” was the comment from my first genuine endocrinologist, who instantly switched me to Lantus-Novolog MDI and signed me up for carb-counting & dosing training. That was in 2003. Since then I’ve moved on to using a pump (Medtronic, 2013) and a CGM (Dexcom 5, 2015). In just the last month I’ve signed on to Medtronic’s fast-track 630G-to-670G program, my old pager-style Medtronic having passed its warranty replacement date. So I’ll soon be entering the miraculous (or not, depending on how it goes) world of the Hybrid Closed Loop.

*My dissertation adviser at the time, a Brit and never one to resist a bit of snark (he was a friend of Terry Jones, whom I got to meet through that connection many years later), quipped “It must be even more annoying to get the ‘juvenile’ kind.”


Bill, your story made me shudder. I know how hard it is now – it must have been 10 times more difficult at the time.

A couple of things struck me in your story:

Your PCP must have been quite a person, to have made the right diagnosis at the time. I am guessing many practitioners at the time (even today) would have diagnosed you as a T2.

This hasn’t changed so much for kids at least – outside of diabetes camp, my kid has only met 2 T1s in his life.

I had a real laugh when I read that but it was a bit bitter.

Do you have any complications?

[EDIT] What a great story, btw. This is the kind of story that many newly diagnosed people with diabetes will want to read.

Thank goodness your wife talked to her mom and that your PCP was on the ball! Wow!!

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I am reading your story again, and this makes me really angry. We meet this syndrome with many physicians, including endos today too.

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Yes, I keep hearing that, but there didn’t seem to be anything remarkable about it at the time. One thing is that adult onset seems to fall into two patterns, sudden vs gradual. For me the whole thing had come on and reached an acute state in just over a month (auto-immune overreaction probably triggered by that nasty cold, which is what my PCP thought and seems to have been mirrored in the experience of other T1s I’ve met). My BG was over 500, I was spilling ketones and nauseous, plus the ravenous thirst/non-stop urination thing, not to mention I had no family history of T2 and wasn’t overweight–heck, I’d been weirdly losing weight. If they hadn’t started me on insulin I would have been in the ER within a couple of days. But there does seem to be this other form where your islet cells are being destroyed at a slower rate, and so you get people stuck trying to manage it with Metformin over months or even a year or more because their PCP went for the obvious but wrong dx just because of their age–which is SO stupid; why do ya think they changed the designation to T1/T2 in the first place f’r cryinoutloud.

In any case they don’t always get it wrong. Over the years I’ve met three people who got it at the same age I was and one who was earlier twenties, all correctly dx’d, and their stories were all pretty much the same as mine. Plural of anecdote isn’t evidence, but it could be that it has at least something to do with how it initially presents.

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Not a one, knock on wood, 33 years and counting. Though I’m starting to have some eye things I need to talk to my ophthalmologist about at my next appointment.


What a wonderful thing. For you, and for us parents of T1Ds too!


That’s really great, @drbbennett.