Hey, this is one of those blog posts intended for search engines more than for the casual reader… unless the casual reader happens to be a type 1 diabetic. I have had type 1 diabetes for more than 35 years, and a month into taking empagliflozin, it’s the biggest transformation I’ve had in my diabetes management experience. It’s been something of a miracle drug for me, and I wanted to share my experience for other type 1 diabetics who are in tight control, but seeking lower insulin doses and, possibly weight loss.
I was diagnosed with type 1 diabetes at age 13, and am now fifty. Like many young diabetics, I did a shitty job of managing my disease until my early twenties, and I experienced some serious consequences, notably significant problems with diabetic retinopathy. For the past 25 years, I’ve been in tight control (A1C below 7, often between 6-6.5) and have been able to manage my diabetes through world travel, unpredictable eating and sleep schedules, etc.
About five years ago, I moved towards using Tresiba as my basal insulin, using Humalog as a short duration insulin. I also moved to continuous glucose sensors. I was able to get much tighter control than I’d experienced with Lantus and Humalog, but it was a very brittle equilibrium. That is to say, I had to eat a very strict low-carb diet, and minor deviations would mean additional insulin.
I changed doctors about half a hear ago when my long time primary care physician retired, and my new doc found me an excellent nurse practitioner who works at a local (Pittsfield MA) endocrinology practice. My new NP talked with me about my diet, exercise, glucose monitoring, etc. and said, “Hey, we don’t recommend this for most patients, but it might work for you.”
The regimen he was recommending was 10mg daily of empagliflozin, a drug commonly used to help with type 2 diabetes. It’s a sodium glucose co-transporter-2 (SGLT-2) inhibitor, which is to say, taking it helps remove sugar from the bloodstream and move it to the urine. This is a phenomenon virtually all type 1 diabetics are familiar with – if your blood sugar is hight, you’ll get thirsty and need to pee. For me, that usually happens at about 240 mg/dl, a level at which I’d usually take a supplementary insulin dose. With empagliflozin, that experience happens at much lower blood sugar levels – around 150 mg/dl in my experience.
My NP suggested I’d need to adjust my insulin needs down, and he was right – WAY down. I am using 75% as much Tresiba as a basal dose, and I am taking 60% as much insulin with each meal. Despite cutting insulin significantly, I have far more flexibility than I used to have with my diet. I’ve cautiously let some carbs back into my diet, having a sandwich on two slices of bread rather than a low-carb wrap, for instance, or a small amount of brown rice with a curry.
What’s been most notable to me is a marked decrease in appetite. This may not purely be from the empagliflozin, as I’m also working on getting my thyroid levels under control. But insulin is known to be associated with weight gain, and I’ve steadily gained weight over the many years I’ve been managing my diabetes. It’s too early for me to say whether I’m experiencing significant weight loss, but my energy is great, my appetite is down, and it’s been much easier to control my sugars despite taking significantly less insulin.
In other words, the last month on empagliflozin has been like playing type 1 diabetes on easy mode. In exchange for drinking a bit more water and peeing a bit more, I have way more flexibility in what I eat, reduced appetite and increased energy. Yes, I’ll take it, thank you very much.
So why isn’t empagliflozin widely prescribed for type 1 diabetics. Well, it is, in Europe. Specifically, Europeans are using SGLT-1 inhibitors (which helps absorb glucose in the gastrointestinal tract) as well as SGLT-2 inhibitors (which focus on the kidneys) for type 1 diabetics who are overweight or obese (that’s me!) In 2019, a small study in Spain saw promising results, as have larger international studies.
So why has the FDA refused to sign off on empagliflozin for Type 1 diabetics in the US?
Diabetic ketoacidosis (DKA) occurs when your body doesn’t have enough insulin to process glucose into energy. The body begins breaking down fat for fuel, producing ketones in the process. The ketones build up in the blood and begin to turn the blood acidic, which has severe and widespread health consequences. DKA was the cause of death for almost all type 1 diabetics before the development of insulin, and still leads to hospitalization and sometimes death for a significant number of diabetics (about 220k hospitalizations and 835 deaths in 2017).
The FDA is concerned that SGLT-2 inhibitors will increase the chances of DKA in patients who stop taking insulin, incorrectly take a dose (pump failure, pen failure), who become dehydrated or have another significant health issue, like infection. I am not able to find studies that show a significant increase in DKA episodes for patients with type 1 taking SGLT-2, but that’s not surprising – the experiments done have been quite small, and DKA is not a routine experience for most diabetics. What this suggests is that FDA is being cautious, concerned that the increased risk of DKA doesn’t justify the benefits of reduced blood sugars, weight loss, etc.
I found this piece, which is extremely cautious as regards use of SGLT-2 in type 1 patients to be especially helpful, because it summarized the stakes so neatly:
“Recent data from the T1D Exchange (T1DX) registry (1), which comprises leading U.S. diabetes treatment centers, show that despite the widespread availability of insulin analogs and increasing use of insulin pumps and continuous glucose monitoring systems, only about 20% of adult patients achieve the A1C target of <7% (53 mmol/mol) recommended by the American Diabetes Association (2). It is reasonable to assume that glycemic control of patients receiving care outside of major centers might be even worse… There is clearly an unmet need for noninsulin adjunctive therapies that improve glycemic control without increasing the risk of hypoglycemia or contributing to weight gain, and it is noteworthy that among nearly 50,000 pediatric and adult participants in the T1DX registry in the U.S. and the Prospective Diabetes Follow-up (DPV) registry in Germany and Austria, two large consortia of diabetes centers, adjuvant medications are being used off-label by 5.4% of participants in T1DX and 1.6% in DPV (5).”
In other words, type 1 diabetes sucks, and most people can’t manage it within ADA’s guidelines, even with pumps, continuous glucose monitors, etc. And so an increasing number of folks are using off-label adjuvant medicines, like SGLT-2.
I wanted to write something about my positive experiences with SGLT-2 and type 1 because I simply couldn’t find another patient account on the web. I am not a doctor, certainly not an endocrinologist, and my experiences may not be your experiences. For that matter, my experiences after a few months on this regimen may be different than my experiences one month in. But, if your diabetes is in tight control, if you rarely have blood sugars above 240 mg/dl, if you’re overweight and having trouble losing weight, you might want to talk with your diabetes doc about SGLT-2 drugs.