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Editor’s note: This article includes four personal experiences managing type 1 diabetes while taking a GLP-1 medication. This is not medical advice. Please talk to your healthcare team before making any changes to your diabetes management regimen. *No one featured in this article received compensation for any products mentioned.
GLP-1 medications like semaglutide (Ozempic, Rybelsus) and dulaglutide (Trulicity) have been making headlines lately for their weight loss benefits even in those without diabetes.
People without diabetes (specifically wealthy celebs) are paying out-of-pocket for these medications to lose weight — leading to a national shortage. This shortage means people with type 1 and type 2 diabetes who have significantly more medically urgent reasons for using these medications cannot fill their prescriptions.
GLP-1 medications can be hugely beneficial to people with type 1 and type 2 diabetes. FDA-approved for use in those with type 2 diabetes, more and more type 1s are experiencing the benefits of this medication, too. (In fact, there is a clinical trial on using GLP-1s in T1D happening right now!)
Why would people with T1D benefit from a GLP-1 medication?
Before you turn up your nose at the idea of a type 1 using medications beyond insulin to manage blood sugar levels, hear us out: your body struggles to properly produce six total hormones. Insulin is the most obvious — and the one you’ve already been taking medication to replace.
But those other five hormones play a huge role in managing your weight, your appetite, your insulin needs, your fasting blood sugar levels, your post-meal blood sugars, and your overall satiety.
GLP-1 medications can help your body compensate for the lack of those other five hormones. Yes, there are a few things to consider: if you have a family history of medullary thyroid cancer, pancreatitis, or endocrine neoplasia, for instance, then you should not take a GLP-1 medication.
While it’s not life-or-death like insulin, GLP-1 medications are essentially a medication many people with T1D would be on for the long-term because it’s replacing something your body needs long-term. (In fact, Europe is way ahead of the US when it comes to approving T2D medications for use in T1D!)
Here, we share four different people’s experiences using GLP-1 medications with T1D.
Ginger Vieira’s experience with semaglutide (Ozempic)
- Diagnosed with T1D at 13 years old (25 years ago)
- Assoc. Direct of Communications at T1D Exchange
- Diabetes author, speaker, writer
- Manages T1D with Lantus, Novolog, Afrezza, Libre CGM
- Also lives with hypothyroidism, celiac, fibromyalgia, and POTS
What led me to consider taking a GLP-1 medication: “In the past two years, I started noticing that my background insulin needs kept trying to creep up. I’d increase my dose by 1 unit and within a week or two I’d also gain one pound on the scale. Rinse and repeat. It wasn’t logical. Now, I am a rather petite person. I’m very active, getting about two hours of exercise daily between any combination of long dog walks, jumping rope, light weights, jogging, and karate. My diet consists of mostly whole foods, etc. And I’m very fond of intermittent fasting! In my 20s, I was a personal trainer, yoga instructor, and record-setting powerlifter — I’m very experienced in managing nutrition, weight, fitness, etc.
It simply didn’t make sense that my insulin needs would be increasing. I’m very diligent about my daily habits and my nutrition. I practice intermittent fasting, and I keep a close eye on my weight.
Already at a very healthy weight, I also found it strange that I couldn’t drop a lingering five pounds of belly fat despite my diligent and active lifestyle. Those five pounds would disappear temporarily if I was sick or when I was going through a lot of stress during my divorce and inevitably undereating. But they always came back. During the past couple of years, I’ve been finding it harder and harder to simply maintain my weight despite my diligent and active lifestyle!
Despite my efforts, my background insulin dose kept trying to creep up from 10-11 units once per day up to nearly 16 units per day to stay in order to stay in my target range. There was no explanation for why it should be increasing like this.
And lastly, my morning dawn phenomenon spike was becoming more and more dramatic, spiking 100 points at 6 a.m. Yes, I would try to wake up and beat it with a dose of rapid-acting insulin, but if I slept in at all, even to 6:30 or 7 a.m., I’d be battling that hormonal spike telling my liver to dump way too much glucose.”
My experience with Ozempic: “First, I started taking metformin, which reduced the impact of dawn phenomenon by suppressing liver glucose production. It also made it easier to simply maintain my current weight and keep my background insulin needs more stable. But after about six months, I saw its impact wearing off.
That’s when I asked about Ozempic.
I’ve been on Ozempic for approximately two months — taking the lowest dose possible of 0.25 mg. Within the first month, I quickly lost the stubborn five pounds that I’d never been able to lose naturally unless I was sick or under intense stress. More slowly, I lost another few pounds. (Per my endocrinologist’s advice, I am still taking metformin, too, for its varied benefits!) I’m easily able to maintain that weight loss with my continued usual habits.
With Ozempic, I also realized how hungry I always felt and how much energy I had devoted to resisting eating between meals. I’ve heard others describe that constant hunger with T1D but I didn’t realize how much I felt it until it was gone. After 25 years of this disease, some things just seem normal until you remove them and realize they ain’t!
I feel so much more satiated after eating compared to before — an incredibly relaxing feeling!
It’s also easier to manage my blood sugar after eating, thanks to how Ozempic slows down digestion and how it suppresses liver glucose production after meals.
I need roughly half as much insulin for meals than I used to. My Lantus dose has gone back to the dose it was several years ago, of nine units once per day. I tried increasing to the 0.5 mg dose as directed but I was having too many lows despite continuing to reduce my Lantus. I feel that the 0.25 mg dose is just the right amount for my body considering I don’t need to lose more weight and I already practice other habits that help maintain insulin sensitivity, etc.
Overall, taking Ozempic has been pretty life changing. My time-in-range has gone from around 85% to around 90-95% once I got a handle on my new insulin doses. I can eat more wholesome carbohydrates without gaining weight. I can truly relax between meals instead of resisting irrational hunger. In a nutshell, I feel like Ozempic gives me all the other hormones my body should naturally produce properly to help me manage my weight, my appetite, and my insulin doses.”
Things to be aware of: “For me, it was obvious I needed a significant reduction in all my insulin doses within the first three days of starting. After another week on the same dose, I saw more hypos and decreased my insulin doses again. Two months in, still with the same dose of 0.25, I had a dramatic low and realized I needed to make yet another small reduction in my background dose. My point is: the impact of taking GLP-1 clearly has a gradual affect, so be patient!
Also, I used psyllium husk capsules (corn husk) during the first month to counter inevitable constipation that comes with taking Ozempic. Two months in, I just found I don’t need to take that extra fiber anymore. The nausea was intense for the first couple of weeks and then it calmed down.
Talk to your healthcare team closely! With COVID-19 throwing me off my game for a few weeks, it really took me about two months to get a handle on my new insulin doses. You’ll likely need to basically adjust all your dosing strategies when you have the help of this medication helping to compensate for your body’s dysfunctional production of all six hormones related to type 1 diabetes!”
Also, get your glucagon prescription filled — as you’re adjusting and learning your new insulin doses, you should be extra prepared for the risk of severe hypoglycemia.
Cris’ experience with semaglutide (Ozempic)
- Diagnosed with T1D in her forties
- Manages T1D with a Tandem X2, Dexcom G6
- Experiences migraines with blood glucose levels above 130 mg/dL
- Also lives with several other autoimmune diseases
What led me to consider taking a GLP-1 medication: “All of this started about 18 months into my diagnosis, I had this non-stop crazy hunger that would never go away. I could never feel full unless my stomach was physically full. It was literally driving me nuts and I was starting to gain weight. Even though I was very sensitive to insulin when correcting highs (with a correction factor of 1:90), I was needing more and more basal insulin and bolus for meals.
I weigh all my meals to ensure my insulin dosing is accurate because I’m so sensitive to insulin and carbohydrates. I eat a lot of vegetables, a lot of high-fiber meals, etc. I walk and practice yoga when I can. I have to balance my exercise with a connective tissue disorder that can limit my physical activity, so there are days my exercise is limited. The food prep is a lot of work, but feeling the best that I can for that day or that hour is so worth it — especially when I can avoid migraines and pain.”
My experience with Ozempic: “First, my endocrinologist prescribed liraglutide (Victoza) to help with my constant hunger and post-meal spikes. It helped. We titrated up very slowly because I’m extremely sensitive to all medications. After almost 2 years, I started experiencing intense digestive side effects that were unbearable. So, I had to wean off Victoza very slowly. Don’t stop cold turkey.
Quickly, all that constant hunger returned, my insulin needs increased dramatically, and that’s when my next endocrinologist recommended Ozempic because the side effects were less severe than Victoza.
At 0.25 mg, the drop in my insulin needs was pretty sudden, within the first 24 hours of my first dose. We stayed at 0.25mg for 4 weeks to acclimate my body. My endocrinologist counted about 15 clicks between the 0.25 and 0.5 mg doses in an Ozempic pen, so every 2 weeks we increased my dose by five clicks until I reached a 0.5 mg dose.
At about four months, the nausea side-effects are dissipating — only the first 24 hours of the injection do I have nausea. That constant hunger is gone — a big help to my sanity! I feel satiety so much sooner when I’m eating and I don’t overeat. It’s much easier to not snack between meals, too.
I did try Trulicity briefly when there was a shortage at my pharmacy, but it did not work as well for me. I definitely prefer Ozempic.”
Things to be aware of: “I manage the constipation side-effect by adding raw wheat fiber to my yogurt or hot cereal, it’s very low carb, or I take a magnesium supplement. Definitely talk to your doctor about gradually increasing the dosage of Ozempic very slowly.
As I understand it, Ozempic suppresses the glucagon from your liver, so it’s a shock to your body when you’re suddenly presenting the impact of hormones that your body hasn’t had normal amounts of for so long. The nausea is a result of this, too. Give your body time to adjust.”
Sarah Howard’s experience with dulaglutide (Trulicity)
- Diagnosed with T1D at 20 years old (10 years ago)
- Senior Marketing Manager at T1D Exchange
- Manages T1D with a Tandem X2 and Control IQ, Dexcom G6
What led me to consider taking a GLP-1 medication: “I had been working out diligently, consistently eating healthy, whole foods, and no matter how much I exercised or how many salads I ate, I could not lose even one single pound. Based on my BMI (which I know is not the best metric for health but it’s a measurement I’m very familiar with), I was about 10 to 15 pounds overweight. I was so frustrated because I didn’t know what else I could be doing. I was doing everything right and nothing was working.
My endocrinologist heard my frustration. My wedding was eight months away and I was so frustrated because I wanted to look and feel my best, and I couldn’t get the scale to budge even though I was trying so hard. He suggested a GLP-1 medication.
He also mentioned an SGLT-2 inhibitor but I was in a clinical trial for one of them several years ago and never saw weight-loss results from those. They helped with my blood sugar but not weight loss.”
My experience with Trulicity: “I started Trulicity in March of 2022. For me, I didn’t notice a blood sugar impact as much as others have experienced. My time-in-range stayed the same, around 60-65%, which was disappointing, but I did lose 10 pounds right away, within the first month. Then over the next three months, I lost another 10 pounds. I was taking a pretty low dose of 0.75 mg once a week.
I started working out less because I was incredibly nauseous from the side effects. Hard workouts made me intensely nauseous, like Orange Theory’s high-intensity interval workouts. Steady-state exercise was easier to do. But intense anaerobic exercise was pretty impossible — which was fine by me, honestly, since I don’t like it very much and I was seeing weight-loss results without it.
At first, I had a non-existent appetite, and I had to really convince myself to eat. There were many days when all I could eat was a pack of crackers or a couple of slices of bread. I really only wanted to eat starchy things and a lot of fruit. I couldn’t stomach a salad at all, and I would go weeks without eating a single vegetable because they sounded so unappetizing.”
Things to be aware of: “I stopped taking Trulicity because of nausea and I just wanted to see how things would go if I stopped taking it. I just decided to take a break. It was nice when nausea dissipated — but within two months I had gained back the 20 pounds I lost plus another five. That extra five could’ve been more related to the holidays than going off the drug. My diet wasn’t perfect, but it wasn’t anywhere near enough to warrant a 25-pound weight gain in such a short period of time.
So, earlier this month, I started taking it again at the same 0.75 mg dose. I would say my average glucose is down from the 160s to the 150s. My percentage of above-range is definitely a little lower, too. I haven’t experienced the same nausea this time around either, I’m not sure why, but I still don’t have much of an appetite.”
Samantha Robinson’s experience with dulaglutide (Trulicity)
- Diagnosed with T1D at 21 years old (5 years ago)
- Community & Partner Manager at T1D Exchange
- Manages T1D with an Omnipod Eros, Dexcom
What led me to consider taking a GLP-1 medication: “My doctor brought it up first because I explained that I was exercising every day and still gaining weight after my initial diagnosis, struggling to drop any of it. I gained 30 pounds within the first three years after my T1D diagnosis and I couldn’t get it to budge back down despite appropriate exercise and nutrition. Most of my weight gain happened after starting the pump. I did feel better using a pump though because my A1c was down, and my blood sugars were more stable.”
My experience with Trulicity: “I started Trulicity in April of 2022, and I’ve lost 28 pounds. The first three months I was insanely nauseous and I do still get pretty nauseous within the first 24 hours after my weekly dose, eating is not appealing.”
My doctor wanted me to try tirzepatide (Mounjaro) but it can cancel out your birth control, so we decided that wasn’t a good fit for me.
I haven’t experienced any additional weight loss despite trying. I definitely think that’s why she wants to switch me to Ozempic. I’d like to lose a little more weight. I eat very healthily and I use a Peloton most days of the week and walk a lot on the beach, too.
I have not been able to get Ozempic because of the shortage, so I’m still on Trulicity!”
Something to be aware of: “I can’t prove this, but I feel like I’m more sensitive to alcohol while on Trulicity. I get more easily nauseous. And the loss of appetite during those first few weeks is definitely significant. I had to make an effort to eat! That gets better after a few months.”
If you think a GLP-1 medication might help you as a person with type 1 diabetes, start the conversation with your doctor. Many people with type 1 have reported successfully getting insurance coverage through national insurance plans. Your doctor will likely need to submit a prior authorization explaining your experience with insulin resistance, weight gain, and incessant hunger.
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