Happy Saturday! Welcome to Ask D’Mine, our weekly advice column hosted by veteran type 1 and diabetes author Wil Dubois in New Mexico, who happens to have experience as a clinical diabetes specialist. This week, Wil ponders the mystery of “disappearing diabetes” — or when it seems like blood sugar control has magically gone on auto-pilot(?) Here’s Wil’s take on that.
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Noel, D-mom from Nova Scotia islands, writes: Maybe this is where I can reach someone who will actually hear me. My daughter is type 1 diabetic. She has been on 70-80 units of insulin for ten years. Hospitalized one month ago with her first ever DKA. No change in insulin. A week or so later she began running daily lows. I backed off her insulin, eventually to zero. She kept running low, several times a day, as low as 1.7 [31 mg/dL for USA readers]. Emergency treated twice. We are now on day 9 with NO INSULIN. She still is running mild occasional lows in the 3s [50s for USA], but otherwise stable, healthy sugars with rare mild highs that self correct within two hours.
Only one endocrinologist on this whole tiny island, and we haven’t gotten near her. In ten years my daughter has not lived a day without insulin until now, and normally runs her meter past its 32.5 limit [585 mg/dL] so that it just reads “High.” I’d like to know what is happening. We’re way past the honeymoon window and way past any “residual insulin” explanation. Her sugars today have ranged from 3.1 to 7.6 [55 to 137 mg/dL] with NO insulin. Something happened that reversed ten years of type one diabetes, and no one here is trying to find out why. I hope this reaches someone who understands how unbelievable this is and who knows enough to try and figure out what’s really happening, because I seem to have discovered the only thing that doesn’t exist on Google.
Wil@Ask D’Mine answers: Well, I sure as hell want to know what’s happening, too. And I can’t imagine why none of your docs are interested. But as you say, most of them aren’t specialists, so they don’t realize how special—or dangerous—this situation really is.
Yeah. Sorry, but I can only think of four things that can be going on here, and unfortunately, one of them is deadly serious. Your new vocabulary word for the day is insulinoma, a type of tumor in the pancreas that causes excessive insulin to be produced. About 90% of insulinomas are benign, so the main risk from them is endogenous hypoglycemia, but the rest can be cancerous, so it’s important to get this ruled out.
Now, there are more than a couple of problems with this theory. First, insulinomas are crazy-rare. Second, they tend to show up in older people, especially women aged 40-60, not young’uns like your kid. Oh, and lastly, if a young type 1 actually developed an insulinoma, could it actually produce insulin? Insulinomas cause beta cells to over-produce insulin, but the type 1 diabetes has pretty much wiped out the beta cells, right? Well… not so fast.
In “stable” type 1, the immune system defect that attacks the beta cells is ongoing, but there’s evidence that the little buggers keep trying to grow back. I guess it’s possible that if the tumor worked faster than the immune system, the beta cells could get ahead and bloom, so insulin returns. Something similar is reported by Oxford University in a type 2 patient here. There are at least two
This might also serve to explain why your daughter is not only surviving without her injected insulin, but is actually having some lows. Because if she were miraculously cured, which was one possible explanation we’d otherwise have to consider, I’d expect her blood sugar to be normal. But she’s not normal. She’s doing crazy well, more than a week with no insulin, but despite that, she’s actually having lows. That tells me she’s getting insulin — too much insulin — from somewhere.
And what about a miraculous cure? Could her diabetes somehow have reversed itself? Is there some magic track where you can stuff diabetes into a hat and with a bit of a hand-trick, just make it go poof and disappear?
I always like to say that anything is possible, but as you point out, a type 1 reversal doesn’t exist — not on Google, or anywhere else in the known Universe for that matter. The only reversals we’ve seen are from pancreatic transplants, and even those aren’t enduring. So while it’s always possible that some crazy combination of food your daughter ate turned out to be the “cure” for type 1 diabetes, I’m not too optimistic about it. And as we talked about, her sugars are still out of whack, just in a new way.
A more realistic possibility than a spontaneous reversal of type one is that perhaps she never had type 1 diabetes in the first place. You mentioned that there’s only one specialist on your island, and that your daughter never had a DKA until just recently. So what were the circumstances of her diagnosis? Most T1 kiddos are diagnosed via a DKA. I also noticed that your daughter’s insulin doses are pretty darn high for a type 1. If you don’t mind my asking, is she on the heavy side? Or was she when she was diagnosed? Ten years ago there was an epidemic of early onset type 2 diabetes in children that took the medical community by surprise. As it turns out, when type 2 strikes kids, it does so with lightning speed, not with the leisurely progression we see with adults. As it moved fast, and as most docs never heard of T2 in kids, many of these children were misdiagnosed as type 1s.
If your daughter was one of them, and if she’s since lost a lot of weight, her body’s natural underlying T2 insulin production might well be able to meet her needs again. But this still wouldn’t explain the lows. Which leads us back to the insulinoma, or the fourth possibility, which is one you are not going to want to consider.
I’m sure your daughter is a perfectly adjusted, lovely young lady. But you know what? There’s quite a range of psychiatric disorders
But regardless, one thing is for sure: This is real. The meter and the ER visits prove that. Some how, some way, your daughter is holding her own, and even coasting low without the shots you were giving her. And whether it’s caused by a tumor in her pancreas, a decades-old medical misdiagnosis, an unrecognized psychiatric problem, or a first-of-its kind miracle, it needs to be investigated properly by a medical expert. And quickly.
This is not a medical advice column. We are PWDs freely and openly sharing the wisdom of our collected experiences — our been-there-done-that knowledge from the trenches. But we are not MDs, RNs, NPs, PAs, CDEs, or partridges in pear trees. Bottom line: we are only a small part of your total prescription. You still need the professional advice, treatment, and care of a licensed medical professional.