Home Diabetes Care Why I Haven’t Died Yet: My Fifty Years with Diabetes

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

Why I Haven’t Died Yet: 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 helping non-technical audiences higher understand complicated topics around diabetes, often with a twist of humor. It’s a free newsletter which you could enroll for on the location. Dan has had T1D for over fifty years. He has a background in biotechnology and entrepreneurship and has spent much of his profession teaching and translating technical concepts to students, investors, patients, and others within the medical ecosystem. 

On April 2, 1973, our family doctor informed us that I had type 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 surely be a cure in five or ten years!

Many other T1Ds have heard similar claims after they were diagnosed — even to today — which contributes to the running joke inside the community, “The cure for diabetes is simply five or ten years away… and at all times will likely be.”

Despite the incontrovertible fact that we’re still waiting for that elusive cure, the excellent news is that I lived longer than I used to be speculated to. A literature review of studies that estimate the life expectancy of T1D estimated that I might live to 57.4 years.

Yes, I’m still alive at 60. Or, so I think. But, how do we actually know? As you ponder that, listed below are a couple of fun stats about my fifty years as of April 2, 2023:

  • Total variety of days living with T1D: 18,262
  • Variety of insulin injections: 146,100 (average 8 per day)
  • Total amount of insulin taken: 1.74 gallons (~36 units per day over 50 years: 657,432 units)
  • Total blood glucose meter tests: 109,575 (1990-2020 / 10 strips/day)
  • Longest consecutive hours TIR (time-in-range): 207 (8.625 days)
  • Carbs/day: 426g (40 percent carbs, 30 percent fat, 20 percent protein)
  • Exercise: 147 mins/day (10.8mi/day – running/walking/climbing)
  • Highest and Lowest A1c: 7.8 percent and 5.5 percent, but I recall >8 percent within the mid-Nineteen Eighties

I consider myself in ideal health now (TIR: 95-97 percent), but my first 45 years were removed from spectacular, if not downright self-destructive. Actually, it was because of my poor health that I figured I should probably manage the disease higher, especially because it looks like a cure remains to be one other five or ten years away.

My health recovery process began by getting a Dexcom G6 in 2018, which allowed me to trace glucose levels. Immediately, I saw positive results (see chart). However the CGM alone only got my A1c to six.5 percent — good, but I used to be still having a number of hypo events (especially at night), and my TIR was still only at 80 percent. My doc told me that was pretty good, however the hypos were just an excessive amount of.

I began researching medical literature to learn concerning the metabolic system, with particular concentrate on the mitochondria, the “engine” that converts fuel (glucose, fats, and other substrates) into energy. Understanding how that system is supposed to work helped me higher understand what to do (and what to not do) when my very own system wasn’t working properly.

Long story short: The metabolic system is very complex and surprisingly contradictory to standard wisdom, which explained loads of misconceptions that I had about T1D management. While I make no claims to be nearly as proficient as scientists, researchers and doctors, my goal was to know enough to administer my very own disease higher, and I got that, plus a brand new perspective on the whole diabetes ecosystem. (My article about that may follow this one.)

While I actually have “succeeded” by getting my glucose patterns in non-diabetic ranges, the complexity of the disease and the way I navigate it makes it difficult to clarify my protocol briefly. I regrettably find myself saying, “It’s not that easy!” But then I assure those that a cure is simply five or ten years away.

That said, I imagine I can reduce my T1D management framework to those three things:

Using glucose patterns in CGM data to forecast glucose trends permits you to proactively take motion before glucose levels exit of range. This does not mean that you have got to obsessively watch numbers every moment of the day. I look once an hour or two, aside from once I’m tracking extremes, once I’ll watch more steadily. But it surely’s not nearly watching. You’ve to take motion from the patterns you see — and people you anticipate.

I often compare T1D management to driving a automotive: You steer the wheel for the massive turns, however it’s whenever you’re just going straight, you continue to must nudge the wheel gently this fashion and that, or the automotive will drift. Before you recognize it, fweee! Off the cliff you go. The metabolic system is like that–it might unexpectedly drift this fashion and that, so you must sense those movements and react with counter responses, just to remain on the right track. In the event you misjudge the road, or react too late, off the cliff you go.

The issue for T1Ds is that we will’t just react to readings we see “right away,” unless needed, in fact. The issue is that any actions we take — especially when taking insulin — doesn’t take effect immediately. There are all types of roadblocks that decelerate absorption, interfere with metabolization, and plenty of other regulatory aspects that make it needed to take motion ahead of time, before those things occur. And that’s where forecasting is important.

Learning to master dosing insulin or calibrating for food is an art, not a science, and it requires knowing what you’re going to do inside the subsequent few hours and planning ahead. Whether eating food, exercising, sitting around, driving, writing, sleeping, or the rest, one has to learn the right way to dose (each insulin and carbs) prematurely of those future events, and expect volatility. This requires constructing empirical experiences and personalizing your patterns.

It takes time, of course, which is why children and adolescents find it so difficult. They don’t have years of experience to attract upon, plus their bodies are changing, and mental immaturity makes it hard to concentrate on such a fancy system. What they’ve on their side, nevertheless, is youth. By the point they reach their mid-20s — you recognize, in about five to 10 years — things are inclined to stabilize, each physically and mentally.

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

You’ll notice I didn’t mention diets. Many T1Ds imagine that low-carb or high-carb diets are the method to control glucose, but again, it’s not that easy. Much more elements are involved than simply that, and while a healthy weight loss program is important to anyone’s health, the key to managing glucose is the fine-tuning forecasting model described above.

That, and exercise, so let’s go there.

Nothing is healthier than exercise for individuals with diabetes, or anyone else for that matter. Even just walking 15-Half-hour after meals is an awesome method to stabilize glycemic variability, improve insulin sensitivity, and burn off recently consumed glucose. In the event you upgrade to a quicker pace, or start jogging, climbing or cycling, your metabolic fitness improves, further optimizing metabolic efficiency.

Here’s the snag with exercise: The metabolic system is adaptive, in order you go from restful to energetic over a period of weeks and months, the metabolism adjusts to optimize efficiency. As your metabolic rate increases, glucose and insulin will each metabolize more quickly and efficiently, so insulin-to-carb ratios will change, and total insulin needs generally drop.

This may increasingly sound complicated — since it is — however it’s not not possible. The prime deterrent for a lot of T1Ds is hypoglycemia, which happens because they don’t expect total insulin requirements to drop a lot, or the incontrovertible fact that when insulin is required just isn’t because it was without exercise. One should try to search out clinicians expert in T1D exercise, but such experts are usually not only hard to search out, insurance doesn’t often cover them.

The purpose being that the trouble is value it, which brings me back to essentially the most basic type of exercise: Walking. Just somewhat bit goes an extended, good distance. Go on–take a brief walk right away. I’ll wait.

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

Stress is the T1D’s worst enemy. It increases cortisol, which induces insulin resistance and signals the liver to provide glucose (neoglucogenesis), each of which make blood sugar harder to stabilize. Everyone knows reducing stress just isn’t easy, but make a mental bookmark on this: One cannot get T1D under control unless stress is reduced. Note that exercise reduces stress and the unpredictability of untamed blood sugar swings.

Sleep can be incredibly essential. A paper in The Lancet showed that glucose levels rose, together with insulin requirements and stress hormones, in non-diabetics deprived of rest. The paper shows graphs of glucose levels from those without sleep, and they give the impression of being as bad as many T1Ds. In the event you’re a T1D without getting proper sleep, self-management will likely be quite difficult.

Mental health just isn’t nearly stress, but motivation. You’ve to want to be healthy, and that may probably run counter to your natural desires or tendencies. Clinical depression is kind of high within the T1D community because of the feedback mechanism of poor control and insecurity that it can be controlled. Getting out of that loop is the primary order of business.

That is where psychologist Brian Little’s concept of “free traits” is available in. By “free,” he’s referring to traits that will include certain proclivities, akin to introversion, attraction to risks, or predisposition to sweets, but they’re “free” in that they might be curtailed when something is very important to you — a “core project.” In the event you absolutely love food a lot that you simply are willing to let your glucose levels shoot into the stratosphere, then find another non-T1D-related motivation for not wanting to let that occur.

My “core project” is my desire to in the future have the option to pick up future grandchildren. I don’t need to blandly have a look at them from a hospital bed with tubes keeping me alive as drool drips from the corner of my mouth. What an awful future that may be. I need to stay very healthy, just as I’m right away, and be ready for when those grandchildren come screaming into my house yelling, “Grampa!”

I realize it’ll occur too, because my son continues to vow me that it’s only five or ten years away.


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

Reynolds A et al. The Timing of Activity after Eating Affects the Glycaemic Response of Healthy Adults: A Randomised Controlled Trial. Nutrients. November 13, 2018.

Spiegel K et al. Impact of Sleep Debt on Metabolic and Endocrine Function. Lancet. October 23, 1999.

Little, B. Personal Projects and Free Traits: Personality and Motivation Reconsidered. Social and Personality Psychology Compass. April 3, 2008.


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