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

How I manage T1D while waiting for “the cure.”

My fiftieth anniversary with T1D (image AI-generated via Adobe Photoshop)

Listen to this really fun AI-generated audio summary of this article.

On April 2, 1973, our family doctor informed us that I had type 1 diabetes (T1D), so I, a ten-year-old, would have to take daily insulin injections to stay alive. The good news, the doctors and others assured me with high confidence, was that a cure was only five to ten years away! All I had to do was, well, wait. And stay alive by taking insulin.

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, I managed to live 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. (I joke that my birth certificate actually has an expiration date.)

Yes, here in 2023, 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% carbs, 30% fat, 20% protein)

• Exercise: 147 mins/day (10.8mi/day – running/walking/hiking)

• Highest and Lowest A1c: 7.8% and 5.5%, but I recall >8% in the mid-1980s

This may look impressive, but looks can be deceiving. My first 45 years of living with T1D were far from spectacular. Actually, it was because of my poor health that I figured I should probably manage the disease better, especially since it looked like a cure is still another five or ten years away. 

No, seriously! In the 1990s when I was in my 40s, they were tinkering with islet cell implants that would be the norm for curing diabetes. When would it be available? Wait for it—about five years. Same with artificial pancreases: An automated insulin pump was going to relieve all self-management requirements by, wait for it, 2001!

Fast-forward to 2018, when my blood pressure started to elevate, my cholesterol levels were too high, and I was worried that the “enjoy by” date on my birth certificate was nearing its end.

My health recovery process began by getting a Dexcom G6 in 2018, which allowed me to track glucose levels. Immediately, I saw positive results. The chart below shows my A1c levels from 2001 to April 2023.

Yes, the CGM helped me fine-tune my dosing and carb protocol such that my A1c dropped from 7.3% to 6.5% in three months. My doc gave me a shiny gold star sticker and a sugarless lollipop, and told me that these stats were really good, and that I really shouldn’t try to do better. (My insurance wouldn’t cover the lollipop, so I had to give it back, or pay $8 for the out-of-pocket charge.)

This isn’t the first time I heard that an A1c of 6.5% was good, nor was it the first time I achieved it, as the chart above shows. The problem was that, in those prior cases, I was having way too many hypo events—I’d get nightly readings <70 mg/dL, and many times <50 mg/dL, often waking up in a cold sweat. No wonder my A1c was so low—it looked good on paper, but the unhealthy lows were devastating. (This is why I get upset with marketing materials that say, “lower your A1c!”, when instead they should say, “Improve your A1c.” There are a lot of T1Ds who are obsessed with high A1c levels and overdo their insulin intake.)

But the A1c of 6.5% while I was on the Dexcom G6 was different because I wasn’t having that many lows. Sure, some, we all do. But not nearly what it was before. The next problem, however, was that it was too hard to incorporate exercise into my daily regimen with that lower A1c level. Keep in mind, when my A1c’s were in the 7s, I could exercise extensively because I had far too much glucose onboard all the time. Hypos were rarely a concern. (In fact, if it weren’t for the exercise, my A1c’s would have likely been in the 8s or higher.)

So, in an effort to learn how to reduce my hypo events, while also exercising, while also staying in range as much as possible, I went beyond my normal health care team and started my real journey: reading medical literature specifically on the human metabolic system. And wow, was I surprised: Not only is the natural human body far more complicated than most people are aware of, but T1D itself is insanely complex. I don’t think even most endos are even aware of the subtler nuances of how glucose is metabolised by the mitochondria. For example, ask your endo about the “lactate shuttle…” Yeah, lactate is a big deal, especially for T1Ds that exercise, and no one ever talks about it.

Reducing complicated medical literature into easy-to-understand language isn’t for everyone, but I think more people can get the gist of it if they have a small bit of training. I write about this in my article, “Who’s the Grand Wizard of T1D Knowledge?”

Anyway, when it comes to having good glycemic control while also avoiding hypos, the medical literature reveals trade-offs. For the next few paragraphs, I’m going to get a teenie bit science-y. Please indulge me—you won’t get bored. It’ll help you understand my particular T1D management protocol.

Let’s start with why the American Diabetes Association and T1D care providers talk about targets of A1c levels of 7%. How was that number derived?

Well, it’s a bit complicated. In an article published by the National Institute for Health titled, “Glycemic Control, Complications, and Death in Older Diabetic Patients,” the authors state that the “widely accepted recommendation that all patients (type 1 or 2) pursue a A1C <7.0% is based largely on the results of the UK Prospective Diabetes Study, which actively excluded people aged >65 years.” For those older patients, those with A1c levels between 6% and 8% had risk profiles at were linearly paired to their A1c levels. That is, the higher the A1c, the greater the risk of death (and confirmed by death stats).

Also factored in was the duration of elevated glucose levels: The longer one’s glucose levels were higher, the worse the risk became. Ideally, an A1c of 6% had the lowest risk profile for all-cause mortality. (Lower than that was dangerous because most people can’t do that well without experiencing dangerous lows.)

Further evidence for a direct correlation between health outcomes and A1c levels was found in the paper, “The association of chronic complications with time in tight range and time in range in people with type 1 diabetes: a retrospective cross-sectional real-world study.” Here, the study authors found that the more time spent in “tight” range (70-140), the rate of long-term complications dropped significantly. The following graphic from that paper shows that a 10% increase for time in tight range resulted in a decrease of 23.8% of cardiovascular disease, and 34.9% of strokes.

Ok, so again, why would the ADA recommend a target A1c level of 7% (or 70% time in range) when the real-world benefits of even lower values was significant?

Simply put, psychology.

Because achieving both lower glucose levels and avoiding hypoglycemia is exceedingly difficult for T1Ds, especially for those without decades of experience living with it, endocrinologists said it’s impractical (if not impossible) to advise patients to achieve tighter control than that. They pleaded with the ADA to set their recommendation to 7% because anything lower than that may have an opposite effect psychologically—that patients would be discouraged from even trying to manage their disease at all, which consequently increases rates of depression and other unintended consequences. (You can read the formalized recommendations and reasoning that reflects this in their published opinion.)

So, now we’re back to age, and me, in particular. Now that I was entering my 60s, I realized that my decades of having elevated glucose levels—even A1Cs of 6.5-7%—likely explains my new elevated blood pressure and other cardiac concerns. Most T1Ds don’t live this long, so most attention is given to children and adults into their 40s. Beyond that, their management is likely pretty good, but also are unlikely to change.

But not me. This is when and why I set a new goal for myself: to reduce my A1c while also avoiding hypos.

As I will describe in detail in a moment, I was able to do it within a year of starting on my Dexcom G6. Today, my A1c ranges between 5.5 - 5.8% (average BG: 118-129 mg/dL). My time in range (70-180) is around 95%, with less than 1% of time below 70 mg/dL, and about 4% time above 180 mg/dL. This is on par with very healthy non-diabetic people.

Granted, getting in such tight control is not easy and it’s not for everyone. It takes discipline, exercise, attention to CGM data, and a willingness to learn about T1D from those outside your traditional care network. That, and time. It takes years to really get used to getting in tight control, not necessarily because it’s technically hard—in fact, it’s easy (technically).

What makes it hard are two factors: First, your body is constantly changing, all the way to the end. Even when you die, you’re body is changing. Fortunately, you won’t need insulin then, so let’s get back on track.

The second thing that makes tight control hard is the mere persistence required to pay attention. You just have to keep at it.

Again, the technical aspects aren’t really hard: Watching your CGM isn’t hard. Bolusing insulin for meals isn’t hard. Nothing is technically difficult. Keeping that in mind shifts the notion of managing T1D from “hard” to, well, tedious. That’s not enjoyable, but it’s better than hard. I learned how and why managing T1D isn’t hard from an unexpected source: an old girlfriend who was deaf. You can read about it in my article, The Sound of Diabetes.

Notice that I did not mention diets, or whether I use an insulin pen or a pump. Ok, fine. I use a pen, but that doesn’t matter, because good glycemic control requires paying attention to your glucose levels, and taking actions when necessary. And you can do that with either a pen or a pump. Choosing between them is really more a quality-of-life question than a science question. While it’s easy to believe that a pump would be “easier” on your quality of life, it’s not that simple. There are pros and cons, so choose wisely. (For more on this, see “Benefits and Risks of Insulin Pumps and Closed-Loop Delivery Systems.”)

So now, the moment you’ve been waiting for: my self-management protocol. You may or may not wish to mimic me, but I’ll talk about it anyway. Who knows, you might be able to master it yourself in less than five years when it won’t even be necessary because a cure will be here by then! NOT. Ok, moving on…

#1 Wear a CGM and PAY ATTENTION TO IT!

All T1Ds should have a continuous glucose monitor. Period. Full stop.

Don’t just wear it; you also have to watch it. A lot. That’s right, pay close attention. Be diligent. If you can’t handle that, or it’s distressing, or you get anxious about numbers, or you hate watching glucose fluctuations, you’re not alone. Perhaps knowing it’s not unusual and you’re not alone helps with that anxiety. But ya just gotta do it. Why? Well, because you then have to take action when your numbers start to move in the wrong direction, not later. Not after your sugars go into the 200s or 300s, or when you’re hypo and sweating bullets. By then, it’s too late, and lots of bad things happen. Stay ahead of the curve. When you adopt this routine, you’ll find it’s much simpler and easier than you think.

Look, any action you have to do will be done. The question is when. Doing it sooner than later is still the same task. The only inconvenience is that you have to do it “now,” rather than when you just want to get around to it.

When you watch your CGM, you’ll notice certain glucose patterns—sugars go up in the morning, and react differently to different foods, and usually go down when you exercise. These are just a few examples, but the point is, learn what to do and what not to do whenever you see patterns you recognize.

I glance at my CGM every hour or two when I’m in a steady state, possibly bolusing a unit here or there. If I have to add a few carbs to avoid lows, I’ll do that too, but well ahead of those lows.

Lastly, it’s important not to obsess about CGM numbers to the point of anxiety. That’s a clear indicator that you’re either overthinking it, or worried that you can’t do it, or are taking it too personally. Cut it out. Relax. None of this works if you aren’t at peace with diabetes. In fact, nothing works if you’re not at peace with diabetes. So, no matter what, you have to get peaceful. Now, go get peaceful!!!!

Are you at peace now? Good.

Oh, one more thing: Managing T1D is an art, not a science. You have to know yourself and how your own body works. T1D is highly personalized because everyone’s metabolic system is different. It cannot be reduced to an algorithm. True, many believe that we will have AI-powered automated insulin delivery (AID) systems do all this work for you within the next five years. And they may be right, because I’ve been hearing about that since the 1990s. If you’re curious what they’re up against, read my analysis in my article, “Challenges Facing Automated Insulin Delivery Systems.”

Until then, managing T1D will remain a highly manual and personalized process that’s always in flux. So, let’s review Rule #1: Watch your CGM and stay engaged with the patterns by eating and/or dosing insulin ahead of the curve.

That may feel like an exercise in futility, but it’s not. Since you mentioned exercise, let’s talk about that next.

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

Nothing is better than exercise for diabetics, 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 carbs. If you upgrade to a quicker pace, or start jogging, hiking or cycling, your metabolic fitness improves, further optimizing metabolic efficiency. The more you can do, the better. But even if all you ever do is walk after meals, you’re going to get a huge bang for the buck.

Here’s the snag with exercise: The metabolic system is adaptive, so as you go from restful to active, your metabolism will adjust accordingly, and when it does, glucose and insulin absorption will change. Mostly, it’ll improve, which means that insulin-to-carb ratios will change towards less insulin for each carb intake. Insulin absorbs more quickly, and total insulin needs generally drop. But there’s lots of variability among individuals—that’s why you have to watch your CGM constantly.

Best of all, exercise not just makes T1D management easier and more effective, but you live longer. I cite a lot of research on this in my article, “T1D and Health: How Long Will You Live?”

Remember that the most basic form of exercise is still highly beneficial: 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 increases insulin resistance and signals the liver to produce glucose (gluconeogenesis), both of which makes blood sugar rise, making it hard to stabilize. Worst of all, stress inhibits the desire and willingness to manage your T1D. You just want to ignore it. It’s a downward spiral of despair.

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. Go ahead, take another walk. It’s good for you. And I got all day.

Now that you’ve had a nice walk, I bet you’re getting tired. Which leads to sleep, which is also incredibly essential, not just for mental health, but metabolic efficiency. A paper in The Lancet showed that rest deprivation caused glucose levels to rise, along with insulin requirements and stress hormones, even among non-diabetics. 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, so prioritize sleep more than you have been.

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, or 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 stare 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 years away.