Desperate to Feel Better: A Teen With T1D Tries an Off-Label Drug
By Lilly Varon
What do you do when the approved drugs and treatments for managing your type 1 diabetes don’t seem to be enough? Lilly Varon, a teen with type 1 diabetes, turned to off-label medications with the help of her doctor.
To dose or not to dose? I look down at the feast before me; my five friends and I are at Dragon Well, a hot pot restaurant. The raw meat has just been placed for us to cook in the boiling chicken broth. Normally, this would be the perfect meal. No carbs means no insulin. But I am vegetarian in addition to diabetic, and the only non-meat options are fried rice or doughy dumplings. I engage in a mental debate. I am starving, and dosing insulin means waiting to eat while I field the inevitable questions from my well-meaning friends. My friends and I know how common eating disorders are in our age group, and I don’t want them to worry unnecessarily about me. However, if I dive into the steaming dumplings without dosing, I will suffer the inevitable blood sugar spike and subsequent crash. Dining with friends is never simple.
Twelve years ago, I was five when I was diagnosed with type 1 diabetes (T1D). Before my diagnosis, I was sick for a week, throwing up and drinking water constantly. Eventually I landed in the ER. My blood sugar was over 1,000, a coma-inducing number that put me in the ICU.
I am the only person with diabetes in my family. Likewise, in my elementary, middle, and high schools, on my sports teams, among my family and friends, I have stood alone. I was the kid at the party who ate carrots instead of chips, always the one with special exceptions. The one with a pump on her arm whose blood sugar was sometimes too low to participate in class, or parties or sports. My continuous glucose monitor (CGM) wasn’t always accurate back then. I didn’t want to be defined by my diabetes, but I suspect that others saw me as a “diabetic” above all else. For example, instead of asking me how I was or how my classes were, my friends’ parents inquired about what I could eat at their houses. Teachers continually asked why my face was flushed, or if I was overheated; did I need water, or did I need to go to the nurse?
Navigating childhood with diabetes was fairly straightforward, as thankfully my doctor is cutting edge and fought to get me a CGM even though the FDA had not yet approved them for use under the age of 18. I was also fortunate that she put me on the most advanced insulin pump at the time, an Animas. I have used a Dexcom CGM since 2010, and switched to a tubeless pump in 2012 called the Omnipod because I am an athlete, and a tubeless pump gives me more range of motion.
Just when it seemed I could reliably navigate my diabetes, I went through puberty. Adolescent hormones are all over the map, and affect blood sugars. This, in turn, causes T1D to be all over the map. Teens are traditionally hormonal and moody, but when you throw in intense blood sugar spikes and crashes, it’s fair to say that life at my house was like living in a hurricane.
In searching for help, my mother consulted my endocrinologist about GLP-1’s. We became desperate for some sort of answer. In 2021, a friend who also has diabetes mentioned a new GLP-1 drug called Ozempic (semaglutide), which had been approved in 2017 for type 2 diabetes. In the absence of anything else regulating my blood sugar, I began asking my doctor if I could try the medicine “off label”. That means that I’d be trying it without FDA approval, because I have T1D. However, I was willing to take my chances. My glucose – and my A1c – were high way too often, so I had a lot of brain fog and I was struggling to just show up in school. I was desperate to feel better.
Thankfully, my doctor agreed to start me on Ozempic in August 2021 with the smallest dose on the prefilled pen, 0.25-mg injections. My A1c dropped a full point! I had an A1c in the 6.8 range for the first time since before I was diagnosed with T1D in June of 2010. Physically, I felt so much better because my blood sugars weren’t on a roller coaster. As a result, I wasn’t tired all the time. This meant that I could show up the way I wanted on my tennis team, which greatly increased my confidence.
I also felt like I was really on top of my diabetes for the first time since elementary school, which also raised my morale. My results have included less bolusing, which is correcting for high or low blood glucose levels, significantly more time in the healthy range for blood glucose, and an average of 4 to 5 fewer units of insulin per day. Also, for the first time in years, I didn’t feel constantly hungry because Ozempic reduces appetite.
Under my doctor’s supervision, we gradually decreased my insulin settings for bolusing and for my basal rate. There is a real concern about additional “low blood sugars'' with GLP-1 medications – not so much for people with type 2 who don’t take insulin, but for those on insulin who haven’t reduced their insulin dose enough. And it’s not a science; it’s art! I have been fortunate with my T1D because while many cannot tell when they are experiencing a blood glucose “low,” I can, and thus can treat it immediately. When I’m exercising, my blood glucose can go really low really fast, so I know to increase my supply of tools, like orange juice and Gatorade, to increase my blood glucose. However, my blood glucose levels are more stable overall, and this is a huge victory for me and a great result from Ozempic.
I am grateful to have a doctor who is willing to listen to me and support me on my unconventional journey, allowing me to try off-label medications. I’m also grateful to the diabetes community for all the information about new breakthroughs and new tools for people with diabetes. As the only person with diabetes I know in my high school, I can feel quite lonely at times, so I really appreciate the diabetes community reminding me that I’m not alone on this journey.
Lilly Varon is a senior at Lick-Wilmerding High School in San Francisco. She plays varsity tennis, soccer, and lacrosse, and also enjoys skiing, hiking, and exploring. Her favorite school classes are physics, architecture, and “Music and the Brain.” She lives with her parents; two older sisters, Alex and Sarah; and their dog, Tucker.