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Another great piece! I'm really curious on your thoughts on pumps and weight gain. It's a constant battle. I'm 49, A1c is 5.4%, total daily dose of about 45 units. I weigh 79.5 kg, so that doesn't seem like an "excessive" amount of insulin. Exercise a lot....yet cannot lose weight for the life of me. Part of it may be that with a 5.4 a1c, I do have lows, which result in some excess calories. I know that a slightly higher a1c/average glucose is fine...but psychologically it's tough. I think every T1D goes thru this battle. I'm curious if you have thoughts on your personal experience.

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one's weight is directly proportional to insulin, which is the only metabolite that converts glucose into fat. (Insulin does other things, too, of course.) If you're taking 45u, and never changes, your weight will never change. The goal is to reduce your insulin intake, but this must be done while also reducing food intake (or your BGs will rise a lot, which carries another set of problems). Given what you said, it would appear much of your excess calories are mostly to stabilize low BGs.

Also keep in mind that higher weight usually implies more insulin resistance, which means that some (unknown) percentage of your insulin is lost to the resistance, which itself has great variability. Knowing how much resistance you have is not easy, as people metabolize insulin differently, even when resistance is not at play. The point is, your high insulin intake and the variability of insulin intake, combined with the delay associated with taking insulin via interstitial tissue, you have a huge amount of variability that makes keeping glucose levels stable.

Exercise is the one thing working for you, but it also exacerbates variability in BG levels because It increases insulin sensitivity, which may act as a counterbalance to your insulin resistance. And both are not smooth and even--they are sporadic over the course of the day. It's like trying to swat a fly that's darting around the air--it's hard to pin down.

All this translates to your basal rates, which will be far from flat. Most people think we need this trickle of insulin constantly throughout the day, which is technically true, but the amount and timing is not that flat. Depending on the type of exercise you do (aerobic vs. anaerobic), duration and intensity, your insulin needs will be affected in unexpected ways, hours after you're done. It will most likely hit you at night, as sleep is when your body sucks glucose directly from the bloodstream to refill glycogen stores in your muscles that you used during exercise. If you're also taking insulin, your BGs will drop disproportionate to your expectations, so you have no choice but to eat quite a bit to keep BG levels higher. That then adds to your weight, which increases insulin resistance.

So you end up with an odd ecosystem of both insulin sensitivity and resistance, each of which affects you at different times.

Lastly, Lantus is notorious for not being as "flat" in absorption than advertised--it also has a tendency to stay in your body for longer than 24hrs... and it has a tendency to cache itself into pockets of fatty tissue for periods of time (sometimes days), like an iceberg. Then, something unwedges it, and you get a huge bolus on insulin hitting you.

I weaned myself off of Lantus in 2019, and it took about a week to see its effects finally dissipate. The way I did it was just go cold turkey--I manually dosed all my basal needs, which requires diligent gazing at the CGM: when BGs would drift up, I'd take a unit or two. (I'd often add it to my bolus for meals.) Because I also exercise a lot, I found that my basal needs were almost entirely before noon, and then dropped dramatically. By 7pm, I required no insulin onboard at all till the next morning. My weight also dropped from 150 to 140, and it's been there ever since. (lbs, not kg)

My A1c is 5.5 and I rarely have lows. (If I do, it dips to 60 now and then, usually overnight, but it's rare.) I never would have accomplished with Lantus.

I completely understand the psychological aspect you mention. You can use this to your advantage by taking the initiatives suggested above and see what works for you.

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Are you saying you're not using any basal insulin?? Could you elaborate how did you achieve that? Very rigorous excercise every single day?

One of the reasons why I switched to a pump (manual one) is the ability to get off insulin quickly, which you can't do on MDI and basal insulin like Tresiba. It makes very convenient to fix overbolusing or just when your insulin needs drop, I'm off insulin fairly quickly, especially with Lyumjev. Feeling a bit low in the middle of the night? One button press to halt delivery and I can just go back to sleep instead of eating and worrying if BG won't skyrocket. If I'm running/cycling I usually leave pump at home for 2-4 hours and come back with a fairly good BG of 5-7 mmol/l. I also eat very high carb, don't have problems with weight so I don't see any reason avoiding any food :D My A1C is exactly like yours - 5.5, although it hasn't been 3 months when I'm on pump, so partly I was still on MDI.

But if I could live off somehow just on Lyumjev and without pump that would be awesome, a true dream control. As I mentioned before, pump has only one advantage for me the rest is a huge burden, I don't like being constantly attached to something and faster acting insulins like Lyumjev make injection sites way worse.

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Hi Thomas --

Unlike you and I, most people don't exercise that much, if at all, and the number of T1Ds who exercise as much as we do is exceedingly rare. And getting to that point is more than just training a lot... the very act of increasing exercise both increases insulin sensitivity and decreases insulin resistance (two different things), which means one's basal rates shift rapidly towards some parts of the day, and nearly non-existent other parts of the day.

Adapting to this shift takes a while, especially because it's a rather progressive process, and you can only do so (while staying euglycemic) if you pay very close attention to your CGM. As exercise increases and metabolic efficiency improves, basal needs dramatically shift in proportion to the level of exercise. Getting used to this is not easy for most people.

Eventually, there's a point where metabolic efficiency reaches a point where muscles pull glucose directly from the bloodstream without insulin mediation, so one must have very little insulin on board (if at all) during highly aerobic exercise, especially over long periods of time. I will go 6-7 hours without insulin during very long hikes up 2k vertical feet.

Note that during exercise, muscles typically get glucose from both the liver and glycogen stores in the muscles. The mitochondria will get glycogen from the muscles' local storage, and while that's good, it's often not enough. Hence, the need for the liver to produce glucose (stimulated by glucagon from alpha cells). Because T1Ds' alpha cells don't produce glucagon properly (because they don't get signaling from beta cells) the liver won't produce glucose (gluconeogenesis), so I have to manually ingest that glucose during exercise (and immediately preceding it). On a typical hike, I usually take in about 100g of carbs so the muscles get their fuel source that isn't sufficiently provided by the muscles' own glycogen stores.

Here's the kicker: Those glycogen stores in the muscles have to be replenished at some point, which typically happens during sleep. Once again, glycogen replenishment does NOT involve insulin mediation--glucose is sucked out of the bloodstream directly, which means that during sleep, your bloodsugar will drop a lot. If you have any insulin onboard, it will add to the drop, causing hypoglycemia. This is a phenomenon called Postexercise Late-Onset Hypoglycemia

https://www.researchgate.net/profile/Michael-Macdonald-21/publication/19483911_Postexercise_Late-Onset_Hypoglycemia_in_Insulin-Dependent_Diabetic_Patients/links/54201d5f0cf241a65a1b0560/Postexercise-Late-Onset-Hypoglycemia-in-Insulin-Dependent-Diabetic-Patients.pdf

So for me, I don't take any insulin at all between 7pm and typically 5am, and also have to take anywhere from 30-50 carbs before going to bed (typically in the form of nuts because the carbs come in the form of fats, which act like a slow basal release of carbs.)

Obviously, I don't take any basal insulin at all -- nor do most highly active T1Ds that I know. And yes, for precisely the reasons you listed: you have to have nothing during those periods when glucose gets sucked right out of the bloodstream. I only take Humalog (Lyumjev) on an as-needed basis. My basal needs are usually between 5-11am and taper off quickly after that.

The bottom line: Learning to do this requires diligence on the exercise regimen and making dosing decisions ahead of time when needed. This can be done using either a pump or MDI, which is really a very minor aspect in the context of everything else one needs to learn and do. But I absolutely would never expect an *automated* system to do this work, because it has no idea (till it's too late) if you're currently exercising or *about* to exercise unless you instruct it to. And if you do, it's no longer "automated."

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I never even thought it was possible. You have it figured out as close to a "cure" as currently possible :D The overall knowledge you share here is of so much value, in my 26 years of having T1D I have never been educated as much, no endocrinologist will tell you this, they just follow the usual guidelines. Naturally so, they just don't live with it, your 50+ years really shows - extremely sharp articles, thank you!

But surely you have to be very non-forgiving with your exercise routine, what if you take a break? Or are sick? Or try to change something instead of following same thing every day? It seems for this to work you would really have to be like a ticking clock all day everyday, one misstep and everything crashes? At least food doesn't seem to be an issue for you as I can see your daily carb intake is ~450g, which isn't low.

Reminds me of this guy https://www.youtube.com/watch?v=WUcrZYv3xYU&t=3s , he was diagnosed as a T1D and after years of injecting he got off insulin completely, but does have to have tight exercise routine or BG starts to creep up. He may or may not be T1D, but he definitely figured out his problem - if he listened to his doctors he would still be injecting needlessly, very lucky.

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thanks for your compliments about the T1D knowledge you're learning here. But to put things into perspective, you seem to be doing just fine yourself. An A1c of 5.5 and you're getting great exercise (which has far-reaching value beyond just T1D and glycemic control). It is the most essential treatment for cardiovascular health, which affects everyone--literally everyone. Cardio events are the leading cause of death for all Americans, diabetes notwithstanding. Life extends for everyone that has a good cardio routine, but of course, it's particularly important for Diabetics, naturally.

Assuming your low A1c is not also associated with hypo events (i.e., you're time <55 is <1%), then it follows that you can achieve tight control without knowing all the technical detail I'm providing. Hey, that's cool, to be sure. What do *you* attribute your tight control to, and (more curiously) how might all this new information help or change your own self-management?

To your question on how I manage control when I'm not exercising, it's harder, but doable. I travel a lot--lengthy hiking and biking trips in other countries--which includes several days on planes and ending up in foreign countries, where I then suffer jet lag. I'll go about 3-5 days without exercise (if any). This sucks, to be sure.

There are also other occasions, like a surgery or being sick, or having to sit in meetings (the worst). For those days, my insulin intake usually doubles, while my carb intake drops by about ⅓. My TIR for those days drops from 95% to between 85-90%, especially the long flights, so it's not pleasant, but it's not horrible. It's like driving around a lot of potholes in the road--just a lot more paying attention, more abrupt and frequent turns of the wheel. Once I'm back in exercise mode, I'm usually back in the saddle on the first day.

Regarding the Rikki Walden video you sent, I tried to look him up in other contexts to see whether vetted medical records are available, but I found nothing. What I do know as a general rule is that older people diagnosed with T1D often have a very mild form, due to a variety of other conditions (including a very slow immune response that doesn't kill enough beta cells to cause real emergency). Plus, beta cells continually regrow--a topic that has been getting a lot more attention lately. (I'll write about that later.) This typically means that older T1's can usually go years without being diagnosed.

The real conundrum is that front-line care providers (such as primary care physicians) don't really do all the proper testing to determine whether people with high A1c's are either T1 or T2. If the condition is mild enough--that is, A1c's are generally in the mid 6's--then giving these people insulin results in improved health, irrespective of whether they're T1 or T2. This also means that many are misdiagnosed as having T2 when they're T1, or T1 when they're T2. So long as the insulin is doing the job, it's not easy to tell the difference *unless* you actually test for antibodies.

The reality is that insulin does a ton of things besides lower glucose levels. It is a "growth" hormone, in that it helps build amino acids and stimulate cell growth throughout the body. It's one of the most robust and multi-functional hormones in the body. Without it, we die. If this guy was truly a T1 and he stopped insulin, he'd not likely live for much longer without taking insulin, depending on when he was diagnosed. Without really knowing much more or access to verified medical records, I suspect he was likely a T2 that was misdiagnosed as a T1. And *that* is very common.

But the bottom line (that was the reason you linked to his video) is that he used exercise to dramatically improve his health. True, that.

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May 29·edited May 29

It's 6-8% of <70, so not that great and it's not just about numbers, pump annoys me, Tresiba has it's obvious downsides too, so I'm still experimenting and looking for best methods possible. For about a week now I'm trying out no basal (just Humalog, better than Lyumjev in this case because it lasts longer), during the day - it's great! I am almost completely free of hypos, I can inject way more freely it always seems to work out, never goes too low. I'm not sure about the BG swings though, coefficient of variation is quite high - about 36-38%, but those swings are within range, meaning very rarely above 170/below 70. Also another problem is that during the night I do need to inject, so not quite the same as for you... My sleep becomes intermittent which isn't good. Maybe my supper should be more humble, I don't know, will try experimenting more. But I do love the freedom, it's the best way definitely - I can be way more spontaneous than when I'm on basal/pump, the only thing I need to figure out are the nights.

But surely you too, during those times when you can't exercise you do use basal insulin, right? Or do you just accept lost sleep a bit and inject during the night?

Your information mostly helps understand that you can't run away from the disease, not engaging with it isn't possible, no latest fancy tech can change that. My management always been just natural flow to excercise and movement because over the years you naturally learn that's the only "drug" that truly helps (combined with some insulin of course).

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Thank you! As a type 1.5 diabetic diagnosed at age 54 13 years ago. I have been on traditional injections, pens, and closed loop Medtronic and Tandem pump/CGM systems. My ‘best’ A1C values were when I was using Lantus and Humalog pens and determining insulin dosage myself based on the amount and types of carbohydrates I was eating and sort of following my endocrinologist’s advice. You really have to educate yourself about this disease and become your own doctor. I hate to sound like a ranting psycho BUT in my opinion medical device companies and pharmaceutical companies are in the business to profit and make money off chronic diseases. They don’t seem to want a cure since that will stop the $$ coming in. The studies that are funded by medical device companies and the amount of $$ they pour in to colleges to train future doctors to diagnose and prescribe along their party line is a very good example - it’s so frustrating! So again thank you for speaking up and sharing your knowledge, I hope it inspires diabetics everywhere to empower and educate ourselves

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For what it's worth, I don't have the same perspective of medical companies or tech companies at all. No one is stopping efforts to find a cure--there's plenty of money to be made by doing that as well, and there's lots of money pouring into research and evolving tech companies to do that very thing.

It is true that they are there to make money, and to be fair to them, they genuinely believe their technology CAN do better, it just needs more time, research and development. It's the same attitude any tech company has. When you think of self-driving cars, AI, social media, smartphones--all of these have some very serious bad effects, but the developers specifically say that's part of the development cycle of evolving tech. That the benefits (one day) will outweigh the harms.

The paradox of entrepreneurship (and building companies) is that you sometimes have to believe your own BS if you're ever going to get past the difficult problems associated with early tech.

As for tech companies in the T1D space, there's no question that the premise of a pump seems valid. Early generations seemed like they'd do well. They kept getting better. And maybe still will. But now that we're beginning to see their limitations on drawbacks, reality will eventually catch up with the hype, and companies will be forced to face the challenges of pivoting in some way.

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Thanks so much! I loved this and am happy to have arrived at having my own agency with T1D. Thanks for the easy-to-read clarity of these concepts and for pointing us in productive directions. I already spend so much time on T1D, because I want to, but this will keep me from chasing poor research design conclusions. You are truly the best and most important T1D asset I have in my own journey. I am grateful to have found you and your work.

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Why thank you, Laura. I am very appreciative of your complements. It's rewarding to me to be of help.

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