Goodbye, Oz

Two weeks ago, at the recommendation of my endocrinologist, I started taking the Type 2 diabetes medication Ozempic for the presumed cardiac benefits. This Friday, I skipped the third injection and I don’t plan to restart it.

I say that with a bit of an asterisk, because off-label use of Ozempic for Type 1 diabetes is poorly charted territory so far.

Since then, I’ve become aware that quite a few endos out there are prescribing it for Type 1 patients. Often, it’s for the same reasons that they prescribe it for folks with Type 2: better blood sugar control and weight loss.

Less often, it’s for cardiovascular risk reduction (my category), or to slow down the progression of kidney disease.

The general thinking seems to be that the combination of initially delayed gastric emptying, weight loss, suppressed appetite, and blood glucose effects will result in the same benefits for people with Type 1 as it does for people with Type 2.

How it works

I’ve learned more about why Ozempic may work well for some Type 1s and poorly for others.

Blood sugar control.

In Type 2 diabetes, Ozempic helps BG control in a couple of ways.

Early on, post-meal BGs tend to be better due to slower digestion which flattens out post-meal highs and inclines people to eat less initially.

But for most people, the digestive effects are supposedly fairly temporary, during the early days of starting the med.

Longer-term, BGs improve for people with T2DM because Ozempic boosts insulin release in response to higher BGs. But that effect is irrelevant for Type 1, because we don’t generally make any insulin.

It also suppresses release of glucose from the liver. This could obviously help BGs in people with T1, but there’s also more risk of lows that are also harder to treat.

It suppresses appetite, especially once people titrate up to the full dose. This would work for T1 as well.

And it can also improve insulin resistance in folks with Type 1.

Weight loss.

Long-term, Ozempic makes it easier to lose weight because it suppresses appetite, which means folks tend to eat fewer calories.

And many move away from higher-fat higher-calorie foods during the early weeks due to the gastric issues, which also tends to translate to fewer calories eaten.

Kidney health.

Ozempic also seems to slow down kidney disease and kidney failure, which has obvious benefits for quite a few people with Type 1.

My experience

Gastrointestinal misery

During the last two weeks, I woke up most mornings tasting what I had for lunch and dinner the previous day, and it was not pleasant. And I can easily imagine situations where meals stay in the stomach for too long.

For me, taking Ozempic felt like deliberately giving myself medication-induced gastroparesis. In fact, many of my symptoms were common to gastroparesis: abdominal pain, bloating, constant uncomfortably-full feelings, and weight loss.

Worse blood sugars

My time in range (TIR) dropped from the high 90% range to the 60-70% range, and my total daily insulin dose (TDD) went up significantly. As I mentioned in my earlier post, I felt like I had suddenly become insulin resistant overnight.

I’d dose unit after unit, and my BG would stay stuck around 170, hour after hour after hour.

And it took frighteningly long to get my sugars back up during the few lows I had.

Reduced physical activity

Plus, my workouts were half as long because I kept having to stop to treat lows. I’d wait and wait for fuel to kick in, even with my pump in exercise mode–probably made worse by the fact that I wasn’t eating enough because I always felt too full.

Unwanted weight loss

I wasn’t looking to lose weight, and I lost five pounds in just two weeks.

No doubt most of it was body fat, but I probably lost some muscle too – and hanging on to muscle is especially important in T1 because it helps normalize BGs in many different ways.

A high-carb reality check

I knew from my own research that high-fat meals were best avoided on Ozempic – but when you have Type 1, suddenly switching to a high-carb diet takes way more than just deciding one day to do it.

It immediately screws up your BGs while you figure out how to recalibrate everything: insulin:carb ratios (I:C ratios), bolus correction factors (CFs), exercise fueling–all of it, through trial and error.

It would take me weeks if not months to figure all this out from scratch. Moreover, I’d still have slower digestion and reduced appetite making all this even more of a moving target throughout those weeks.

I don’t even want to think about how long it would take to finally get back in decent BG control.

And big-picture, being able to fuel so I can stay active, maximizing TIR, and minimizing my BG variability are far and away the best things I can do for my heart situation.

Yet these were all much more difficult on Ozempic.

I already take Losartan, an angiotensin receptor blocker, for both high blood pressure and kidney benefits. My kidneys are doing OK, and my BP is where it’s supposed to be. I’m not convinced it makes sense to rock the boat and risk throwing all this out of kilter.

Takeaways

Since my original post, I’ve heard from a lot of Type 1s about their Ozempic experience–some successes, some failures, not much in the middle.

Better for high-carb diets?

For Type 1 people who follow a relatively high-carb way of eating (well over 100g/day), the slowed metabolism of carbs make them digest more like fat or protein. The blood sugar response curve is long, low, and slow, arguably flattening blood sugar spikes after eating.

And for Type 1 people on a keto or low-carb way of eating, the already-long digestion period for fat and protein becomes extra long.

And maybe some other situations

My completely unscientific sense is that Ozempic might work well for people with Type 1 diabetes if one or more of these things is true:

• Newly diagnosed
• They retain some pancreatic islet/beta cell function, as with latent autoimmune diabetes in adults (LADA)
• Overweight or obese
• Low levels of physical activity, so exercise fueling is not a major concern
• High-carb diet, since it absorbs fastest
• Insulin-resistant
• No gastroparesis or other chronic digestive issues
• Those with existing kidney disease or kidney failure, although I’m not as familiar with this aspect

But this isn’t me.

I’ve had Type 1 for over 5 decades, I have zero ability to produce my own insulin, I’m at my target weight, I’m very active, and I eat a low-carb, high-protein/high-fat diet.

I need more than a couple percentage points of cardiovascular risk reduction – and that’s the most optimistic reduction Ozempic has been shown to provide so far – to justify tanking my BG TIR and variability for some unknown number of weeks or even months while I completely change everything I do to manage T1.

What’s next?

Looking back, it was a miserable two weeks for a minuscule cardiac benefit.

In fact, given the BG effects, I was probably worse off with it than without it.

But I’m still motivated to find other ways to lower my MACE risk.

So questions arise:

• What about a different GLP-1, like Zepbound? I heard from several folks who tolerated that much better than Ozempic.
• Could I get a similar benefit from adding another cardiac drug, for instance, a calcium channel blocker? Would any side effects be acceptable, without creating additional risk downstream from something like reduced exercise capacity?
• What about SGLT-2 inhibitors like Jardiance? Would I tolerate one better than Ozempic? Would I still have to deal with issues, such as suppressed glycogen production, that might put me at greater risk of severe and difficult to treat hypoglycemia? The DKA risk also makes me nervous.
• Is a 2-percentage-point higher risk of a major cardiac event acceptable? Are there yet more lifestyle modifications I could make to offset not taking a drug like Ozempic? My cardiologists basically say “no” but we keep looking.
• What about “in the future” solutions like DT-109, which show promise for blood sugar control and reduction of atherosclerosis in mice? Is that too far away?

I’m sure answers will come, or at least a direction to travel as I look for them.

But one thing I do know: it ain’t back to Oz.