Why I Haven’t Died But: My Fifty Years with Diabetes

The next article first appeared on Dan Heller’s substack, Type 1 Diabetes: It’s Not that Easy, which is devoted to serving to non-technical audiences higher perceive difficult matters round diabetes, usually with a twist of humor. It’s a free e-newsletter which you could join on the positioning. Dan has had T1D for over fifty years. He has a background in biotechnology and entrepreneurship and has spent a lot of his profession instructing and translating technical ideas to college students, traders, sufferers, and others within the medical ecosystem. 

On April 2, 1973, our household physician knowledgeable us that I had kind 1 diabetes (T1D), so I, a ten-year-old, was going to take each day insulin injections to remain alive. The excellent news was there would absolutely be a remedy in 5 or ten years!

Many different T1Ds have heard related claims once they have been recognized — even to this present day — which contributes to the operating joke throughout the group, “The remedy for diabetes is just 5 or ten years away… and at all times will probably be.”

Although we’re nonetheless ready for that elusive remedy, the excellent news is that I lived longer than I used to be presupposed to. A literature evaluation of research that estimate the life expectancy of T1D estimated that I might reside to 57.4 years.

Sure, I’m nonetheless alive at 60. Or, so I assume. However, how do we actually know? As you ponder that, listed below are a number of enjoyable stats about my fifty years as of April 2, 2023:

  • Whole variety of days residing with T1D: 18,262
  • Variety of insulin injections: 146,100 (common 8 per day)
  • Whole quantity of insulin taken: 1.74 gallons (~36 models per day over 50 years: 657,432 models)
  • Whole blood glucose meter checks: 109,575 (1990-2020 / 10 strips/day)
  • Longest consecutive hours TIR (time-in-range): 207 (8.625 days)
  • Carbs/day: 426g (40 p.c carbs, 30 p.c fats, 20 p.c protein)
  • Train: 147 minutes/day (10.8mi/day – operating/strolling/climbing)
  • Highest and Lowest A1c: 7.8 p.c and 5.5 p.c, however I recall >8 p.c within the mid-Eighties

Why I Haven’t Died But: My Fifty Years with Diabetes

I take into account myself in supreme well being now (TIR: 95-97 p.c), however my first 45 years have been removed from spectacular, if not downright self-destructive. Really, it was as a result of of my poor well being that I figured I ought to in all probability handle the illness higher, particularly because it appears to be like like a remedy continues to be one other 5 or ten years away.

My well being restoration course of started by getting a Dexcom G6 in 2018, which allowed me to trace glucose ranges. Instantly, I noticed constructive outcomes (see chart). However the CGM alone solely bought my A1c to six.5 p.c — good, however I used to be nonetheless having a number of hypo occasions (particularly at night time), and my TIR was nonetheless solely at 80 p.c. My doc informed me that was fairly good, however the hypos have been simply an excessive amount of.

I began researching medical literature to be taught concerning the metabolic system, with explicit concentrate on the mitochondria, the “engine” that converts gas (glucose, fat, and different substrates) into vitality. Understanding how that system is supposed to work helped me higher perceive what to do (and what to not do) when my very own system wasn’t working correctly.

Lengthy story quick: The metabolic system is very advanced and surprisingly contradictory to traditional knowledge, which defined loads of misconceptions that I had about T1D administration. Whereas I make no claims to be almost as proficient as scientists, researchers and medical doctors, my aim was to know sufficient to handle my very own illness higher, and I bought that, plus a brand new perspective on your complete diabetes ecosystem. (My article about that can comply with this one.)

Whereas I’ve “succeeded” by getting my glucose patterns in non-diabetic ranges, the complexity of the illness and the way I navigate it makes it tough to elucidate my protocol briefly. I regrettably discover myself saying, “It’s not that easy!” However then I guarantee folks {that a} remedy is just 5 or ten years away.

That stated, I imagine I can cut back my T1D administration framework to those three issues:

Utilizing glucose patterns in CGM information to forecast glucose tendencies permits you to proactively take motion earlier than glucose ranges exit of vary. This does not imply that it’s a must to obsessively watch numbers each second of the day. I look as soon as an hour or two, aside from after I’m monitoring extremes, after I’ll watch extra steadily. Nevertheless it’s not nearly watching. You must take motion from the patterns you see — and people you anticipate.

I usually examine T1D administration to driving a automobile: You steer the wheel for the large turns, nevertheless it’s while you’re simply going straight, you continue to must nudge the wheel gently this fashion and that, or the automobile will drift. Earlier than it, fweee! Off the cliff you go. The metabolic system is like that–it may well unexpectedly drift this fashion and that, so it’s good to sense these actions and react with counter responses, simply to remain on observe. In case you misjudge the street, or react too late, off the cliff you go.

The issue for T1Ds is that we are able to’t simply react to readings we see “proper now,” until crucial, in fact. The issue is that any actions we take — particularly when taking insulin — doesn’t take impact immediately. There are all kinds of roadblocks that decelerate absorption, intrude with metabolization, and plenty of different regulatory elements that make it essential to take motion forward of time, earlier than these issues occur. And that’s the place forecasting is crucial.

Studying to grasp dosing insulin or calibrating for meals is an artwork, not a science, and it requires realizing what you’re going to do throughout the subsequent few hours and planning forward. Whether or not consuming meals, exercising, sitting round, driving, writing, sleeping, or the rest, one has to learn to dose (each insulin and carbs) upfront of these future occasions, and anticipate volatility. This requires constructing empirical experiences and personalizing your patterns.

It takes time, for certain, which is why kids and adolescents discover it so tough. They don’t have years of expertise to attract upon, plus their our bodies are altering, and mental immaturity makes it exhausting to concentrate on such a posh system. What they’ve on their facet, nonetheless, is youth. By the point they attain their mid-20s — , in about 5 to 10 years — issues are likely to stabilize, each bodily and mentally.

(I write concerning the three phases of T1D administration right here.)

You’ll discover I didn’t point out diets. Many T1Ds imagine that low-carb or high-carb diets are the way in which to manage glucose, however once more, it’s not that easy. Way more components are concerned than simply that, and whereas a wholesome weight loss program is crucial to anybody’s well being, the key to managing glucose is the fine-tuning forecasting mannequin described above.

That, and train, so let’s go there.

Nothing is healthier than train for folks with diabetes, or anybody else for that matter. Even simply strolling 15-Half-hour after meals is a good way to stabilize glycemic variability, enhance insulin sensitivity, and burn off lately consumed glucose. In case you improve to a faster tempo, or begin jogging, climbing or biking, your metabolic health improves, additional optimizing metabolic effectivity.

Right here’s the snag with train: The metabolic system is adaptive, in order you go from restful to energetic over a interval of weeks and months, the metabolism adjusts to optimize effectivity. As your metabolic fee will increase, glucose and insulin will each metabolize extra shortly and effectively, so insulin-to-carb ratios will change, and whole insulin wants typically drop.

This will sound difficult — as a result of it’s — nevertheless it’s not unimaginable. The prime deterrent for a lot of T1Ds is hypoglycemia, which occurs as a result of they don’t anticipate whole insulin necessities to drop a lot, or the truth that when insulin is required shouldn’t be because it was with out train. One ought to attempt to discover clinicians expert in T1D train, however such consultants aren’t solely exhausting to search out, insurance coverage doesn’t usually cowl them.

The purpose being that the hassle is price it, which brings me again to probably the most fundamental type of train: Strolling. Just a bit bit goes an extended, good distance. Go on–take a brief stroll proper now. I’ll wait.

And we’re again! Now that you simply’re feeling higher, let’s discuss your emotions.

Stress is the T1D’s worst enemy. It will increase cortisol, which induces insulin resistance and alerts the liver to provide glucose (neoglucogenesis), each of which make blood sugar more durable to stabilize. Everyone knows decreasing stress shouldn’t be straightforward, however make a psychological bookmark on this: One can’t get T1D underneath management until stress is decreased. Be aware that train reduces stress and the unpredictability of untamed blood sugar swings.

Sleep can be extremely important. A paper in The Lancet confirmed that glucose ranges rose, together with insulin necessities and stress hormones, in non-diabetics disadvantaged of relaxation. The paper reveals graphs of glucose ranges from these with out sleep, they usually look as unhealthy as many T1Ds. In case you’re a T1D with out getting correct sleep, self-management will probably be fairly difficult.

Psychological well being isn’t just about stress, however motivation. You must need to be wholesome, and that can in all probability run counter to your pure wishes or tendencies. Scientific despair is sort of excessive within the T1D group because of the suggestions mechanism of poor management and insecurity that it can be managed. Getting out of that loop is the primary order of enterprise.

That is the place psychologist Brian Little’s idea of “free traits” is available in. By “free,” he’s referring to traits that will embody sure proclivities, similar to introversion, attraction to dangers, or predisposition to sweets, however they’re “free” in that they are often curtailed when one thing is necessary to you — a “core venture.” In case you completely love meals a lot that you’re prepared to let your glucose ranges shoot into the stratosphere, then discover another non-T1D-related motivation for not eager to let that occur.

My “core venture” is my need to at some point have the ability to decide up future grandchildren. I don’t wish to blandly take a look at them from a hospital mattress with tubes conserving me alive as drool drips from the nook of my mouth. What an terrible future that might be. I wish to stay very wholesome, simply as I’m proper now, and be prepared for when these grandchildren come screaming into my home yelling, “Grampa!”

I do know it’ll occur too, as a result of my son continues to vow me that it’s solely 5 or ten years away.


Miller R et al. Enhancements within the Life Expectancy of Type 1 Diabetes. Diabetes. November 2016.

Reynolds A et al. The Timing of Exercise after Consuming Impacts the Glycaemic Response of Wholesome Adults: A Randomised Managed Trial. Vitamins. November 13, 2018.

Spiegel Ok et al. Impression of Sleep Debt on Metabolic and Endocrine Perform. Lancet. October 23, 1999.

Little, B. Private Tasks and Free Traits: Character and Motivation Reconsidered. Social and Character Psychology Compass. April 3, 2008.

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