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

The following article first appeared on Dan Heller’s substack, Type 1 Diabetes: It’s Not that Simple, which is dedicated to helping non-technical audiences better understand complicated topics around diabetes, often with a twist of humor. It’s a free newsletter that you can sign up for on the site. Dan has had T1D for over fifty years. He has a background in biotechnology and entrepreneurship and has spent much of his career teaching and translating technical concepts to students, investors, patients, and others in 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 daily insulin injections to stay alive. The good news was there would surely be a cure in five or ten years!

Many other T1Ds have heard similar claims when they were diagnosed — even to this day — which contributes to the running joke within the community, “The cure for diabetes is only five or ten years away… and always will be.”

Despite the fact that we’re still waiting for that elusive cure, the good news is that I lived longer than I was supposed to. A literature review of studies that estimate the life expectancy of T1D estimated that I would live to 57.4 years.

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

Total number of days living with T1D: 18,262
Number 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/hiking)
Highest and Lowest A1c: 7.8 percent and 5.5 percent, but I recall >8 percent in the mid-1980s

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

My health recovery process began by getting a Dexcom G6 in 2018, which allowed me to track glucose levels. Immediately, I saw positive results (see chart). But the CGM alone only got my A1c to 6.5 percent — good, but I was still having lots of hypo events (especially at night), and my TIR was still only at 80 percent. My doc told me that was pretty good, but the hypos were just too much.

I started researching medical literature to learn about the metabolic system, with particular focus 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 better understand what to do (and what not to do) when my own system wasn’t working properly.

Long story short: The metabolic system is highly complex and surprisingly contradictory to conventional wisdom, which explained a lot 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 manage my own disease better, and I got that, plus a new perspective on the entire diabetes ecosystem. (My article about that will follow this one.)

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

That said, I believe I can reduce my T1D management framework to these three things:

#1 Wear a CGM and Watch for Patterns.

Using glucose patterns in CGM data to forecast glucose trends allows you to proactively take action before glucose levels go out of range. This does not mean that you have to obsessively watch numbers every moment of the day. I glance once an hour or two, except for when I’m tracking extremes, when I’ll watch more frequently. But it’s not just about watching. You have to take action from the patterns you see — and those you anticipate.

I often compare T1D management to driving a car: You steer the wheel for the big turns, but it’s when you’re just going straight, you still have to nudge the wheel gently this way and that, or the car will drift. Before you know it, fweee! Off the cliff you go. The metabolic system is like that–it can unexpectedly drift this way and that, so you need to sense those movements and react with counter responses, just to stay on track. If you misjudge the road, or react too late, off the cliff you go.

The problem for T1Ds is that we can’t just react to readings we see “right now,” unless necessary, of course. The problem is that any actions we take — especially when taking insulin — doesn’t take effect right away. There are all sorts of roadblocks that slow down absorption, interfere with metabolization, and many other regulatory factors that make it necessary to take action ahead of time, before those things happen. And that’s where forecasting is essential.

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 within the next few hours and planning ahead. Whether eating food, exercising, sitting around, driving, writing, sleeping, or anything else, one has to learn how to dose (both insulin and carbs) in advance of those future events, and expect volatility. This requires building empirical experiences and personalizing your patterns.

It takes time, for sure, which is why children and adolescents find it so difficult. They don’t have years of experience to draw upon, plus their bodies are changing, and intellectual immaturity makes it hard to focus on such a complex system. What they have on their side, however, is youth. By the time they reach their mid-20s — you know, in about five to ten years — things tend to stabilize, both physically and mentally.

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

You’ll notice I didn’t mention diets. Many T1Ds believe that low-carb or high-carb diets are the way to control glucose, but again, it’s not that simple. Far more elements are involved than just that, and while a healthy diet is essential to anyone’s health, the secret to managing glucose is the fine-tuning forecasting model described above.

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

#2 Exercise. Yes, Exercise. Just do it.

Nothing is better than exercise for people with diabetes, or anyone else for that matter. Even just walking 15-30 minutes after meals is a great way to stabilize glycemic variability, improve insulin sensitivity, and burn off recently consumed glucose. If you upgrade to a quicker pace, or start jogging, hiking or cycling, your metabolic fitness improves, further optimizing metabolic efficiency.

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

This may sound complicated — because it is — but it’s not impossible. The prime deterrent for many T1Ds is hypoglycemia, which happens because they don’t expect total insulin requirements to drop so much, or the fact that when insulin is needed is not as it was without exercise. One should try to find clinicians skilled in T1D exercise, but such experts are not only hard to find, insurance doesn’t often cover them.

The point being that the effort is worth it, which brings me back to the most basic form of exercise: Walking. Just a little bit goes a long, long way. Go on–take a short walk right now. I’ll wait.

And we’re back! Now that you’re feeling better, let’s talk about your feelings.

#3 Stabilize mental health.

Stress is the T1D’s worst enemy. It increases cortisol, which induces insulin resistance and signals the liver to produce glucose (neoglucogenesis), both of which make blood sugar harder to stabilize. We all know reducing stress is not 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 wild blood sugar swings.

Sleep is also incredibly essential. A paper in The Lancet showed that glucose levels rose, along 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 look as bad as many T1Ds. If you’re a T1D without getting proper sleep, self-management will be quite challenging.

Mental health is not just about stress, but motivation. You have to want to be healthy, and that will probably run counter to your natural desires or tendencies. Clinical depression is quite high in the T1D community due to the feedback mechanism of poor control and lack of confidence that it can be controlled. Getting out of that loop is the first order of business.

This is where psychologist Brian Little’s concept of “free traits” comes in. By “free,” he’s referring to traits that may include certain proclivities, such as introversion, attraction to risks, or predisposition to sweets, but they are “free” in that they can be curtailed when something is important to you — a “core project.” If you absolutely love food so much that you are willing to let your glucose levels shoot into the stratosphere, then find some other non-T1D-related motivation for not wanting to let that happen.

My “core project” is my desire to one day be able to pick up future grandchildren. I don’t want to blandly 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 would be. I want to remain very healthy, just as I am right now, and be ready for when those grandchildren come screaming into my house yelling, “Grampa!”

I know it’ll happen too, because my son continues to promise me that it’s only five or ten years away.

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