Let’s be frank — weight is a touchy subject. No matter where you fall on the spectrum, someone always has something to say about it. Living with diabetes adds another layer. Along with the usual shame and stigma, we’re surrounded by providers, social media influencers, and “well-meaning” family members who want to talk about insulin making us gain weight, losing weight with one of those “diabetes meds,” or the ubiquitous “Should you be eating that?”
It’s not a conversation we can avoid, so let’s dig in. What should we know about T1D and weight changes—and more importantly, how can we protect our mental health in the process?
Before diagnosis, our body is essentially starving. Without insulin, glucose can’t enter our cells, so the body uses fat for energy. The epic downside? Breaking down fat creates ketones, which at high levels become toxic (eventually causing diabetic ketoacidosis, or DKA). The “weight loss” here isn’t true weight loss—it’s the body struggling to survive.
Once insulin begins, our body can store and use energy again. Many people regain the weight they lost pre-diagnosis because that loss wasn’t sustainable or even real. We weren’t even in a caloric deficit, our bodies just literally couldn’t do anything with the food we were eating. Insulin simply allows the body to metabolize food as it’s meant to.
Insulin dosing is more of an art than a science. Even with CGMs and pumps, lows still happen. Treating them often means consuming calories we might not otherwise eat—and sometimes more than we technically need. Frequent lows can add up over time, leading to weight changes, and even more so if we’re consuming far more calories than we need (we’re looking at you, second bowl of Cheerios). Of course, taking care of low BGs is crucial in managing diabetes, but being mindful about how much we’re consuming can both stave off unwanted weight gain and keep us off the roller coaster of low-high-low-high. Developing coping strategies for effectively treating your hypos is going to help in more ways than one!
It may be surprising, but insulin isn’t the only hormone gone awry in type 1 diabetes. Amylin is another hormone produced by beta cells (which take a permanent vacation with T1D) in conjunction with insulin, and part of its job is to help us feel full and slow down digestion. While replacement amylin (Symlin) came about about 20 years ago, it didn’t catch on because it required an injection at every meal. One reason GLP-1 medications have become a popular off-label option amongst people with T1D is it helps to supplement some of the hormonal benefits we’re missing.
People with T1D face higher risk for disordered eating. Since food is so tied to our management, it’s easy to become hyperfocused on what and how much we eat—not just for blood sugars, but for our pant size too. If you feel stressed, anxious or avoidant when it comes to you and the food you eat, check out The Diabetes Link’s resource page on diabetes and disordered eating in the Resource Hub.
Weight fluctuations — and the conversations about them — aren’t going anywhere any time soon, but with the right tools and strategies, you can deftly respond to all inquiries, protect your mental well-being, and keep the peace with your body while managing the daily realities of type 1 diabetes.