Came across this article which started off interesting but ended up baffling me. Would appreciate hearing from anybody who has tried Ozempic or similar in an off-label way as implied by this article.
FYI I am certainly not endorsing the off label use of these drugs for Type 1 D…but Dr. Garg (the researcher highlighed in the article) seems to be: "Eventually, however, Garg thinks that almost everyone with type 1 diabetes will be using a GLP-1, even people who are not overweight: “There are benefits above and beyond weight loss, even in individuals with normal BMI [body mass index].”
Meanwhile, further on Dr. Garg says: "For now, Garg does not recommend GLP-1s to patients who are not overweight. The risks are far too unknown. But some of his more adventurous and determined patients have convinced him to let them try:
“I have a few patients who are lean-bodied who are on these drugs. Do I want them to use them? No. But it keeps their blood sugar profile so flat, even I love it. Their A1C is down into the 6s. But at the back of my mind, I always have a hesitation that these individuals might go into ketosis.”
In summary, so many contradictory conclusions or implications are presented in the article that I wanted to get it out there for comments…Has anybody with T1D tried these drugs and if so, do you have any information to share?
Yes, I’ve been on Victoza, Trulicity, and Ozempic over the past 9 years - my endo recommended it because I was having trouble just eating too much all the time. No issues; I’ve been very happy. I’m sure my blood sugars are more stable because of it, but I’ve also had a CGM since around the same time.
I think this has been discussed many times in the past here or on other diabetes message boards if you do some searching.
Thanks for heads up! You are correct, this has been discussed many times on FuD and elsewhere. I guess I was so flabbergasted by that wishy washy article that my brain went numb…
I read that article just now… that was an intense, thorough amount of information about these drugs and type 1! Lots of people sure are happy on them. I have gone 2 separate weeks without in the past (once when I forgot and once when my rx ran out), and I could really tell a difference. I hope they are easily accessible in the future.
Hi I am new here, I live in Canada and I have been T1D since the age of 20, now 49. I have been using an pump for the last 20 years and after reading an article (google: Impact of adding semaglutide in a person with type 1 diabetes: A case report.)
I finally convinced my Endocrinologist to prescribe it for me. (and thankfully did not take too much convincing)
I was using approx 100u of insulin per day and fought terrible after supper highs for years.
Also 5’5" and 230lbs.
I am now using half the amount of insulin (53u/day) and have lost 40lbs.
It has been an absolute godsend.
Hi! I wish I could adequately explain how or why it works, but that article I mentioned, explains it very well.
It was an almost immediate change after my first dose (.25mg)
My blood sugars did not spike after supper (for reference, regardless of pre-bolusing or amount of insulin taken with my meal) normally my blood sugar levels would jump to 18-22. Then it would be a fight of constant corrections for the next 4-5 hours before it would finally start coming down.
And a good chunk of my extra insulin usage was just from my dinner.
I checked my daily insulin average after 1 week of using Ozempic, and it was down to 68u per day.
Now currently, I am on a 1.0mg dose and have been taking Ozempic for just about 2 years.
Weight loss has tapered off.
I get full much quicker, do not eat nearly as much and thankfully have not had any nausea or bad side effects that some people associate with taking Ozempic.
My hope is that someday it will be approved for Type 1 Diabetes because it has been an absolute game changer for me!
@ClaudnDaye Many T1s also have IR, so adding GLP-1s help with BG control and as an added benefit they also have cardiac and weight control benefits. Personally, like @allison I have been on several of them for almost a decade (Victoza, Ozempic and now Mounjaro). My TDD has dropped from ~78 units to 34 units and I have lost 2 inches in pants sizes while on them. Could I lose more weight? Probably if that was my primary focus. What I am really happy with is my overnight BG control which really changed with the GLP-1s - no more Dawn Effect. The greater satiety is another bonus, especially at night when the rest of the house is eating like a bunch of lumberjacks.
For six years now I’ve been on a glp-1, first liraglutude but it caused some GI issues. I then switched to semaglutide, and no issues after almost two years now.
I need very little to see dramatic effects - mostly, I’m not constantly hungry and trying to ignore that hunger (drove me crazy, 24hrs/day) and my liver isn’t over producing glucagon (so I need MUCH LESS insulin).
We have discussed this in detail in FUD, as you’ve found. If you would like other articles with endocrinologists that simplify how and why they work for T1D, I have a couple. Lmk!
@MsCris if you wouldn’t mind posting links to those articles here, I would appreciate it. I would love to get additional information to my (new) endocrinologist on use of GLP-1s in type 1 (especially use in non-weight loss). I am interested in getting food out of my thought patterns and additional assistance with dawn phenomenon (currently taking metformin, which initially seemed to solve it, but DP has snuck back in…). Thanks so much! Jessica
Sure! Both of these were written with Dr Claresa Levetan, she’s world reknowned in T1D, and holds several patents in that realm towards treatments and cures.
Background to better understand the intricate hormones:
@MsCris well you have outed yourself. The article on the 6 disfunctional hormones is right on for type 1s and as you sited for type 2s as well. My Beta cells are tapped out from over work so the inter communication between the 5 islet cells is broken as well.
Dr. Levetan is who deserves the kudos - but I’ll take the compliment! I hold a special place in my heart for her, she made a huge difference in my life and I am lucky to have her as a friend. I spread her word.
While the origins are quite different, T1 and T2 (T3, and others) can have a lot of overlap in successful treatments. Each person is different, and I so wish the treatment options were available to all of us, with education. Education is the key.
I’m sorry you’re struggling so much, @CarlosLuis ! Somehow you stay so positive - that is admirable. I am always happy to read your posts.
It’s craziness – that ER metformin is this peaky – ?? So backing off of the timing, if my DP shows up at 3-4am, I should be taking it at 7-8pm? Also, I take 1000mg at night but also 500mg in the afternoon – wondering if I’d be better off taking it all at night. I am also wondering if the metformin itself might be slowing the digestive process and just not releasing the food from dinner until 3-4pm (thus blood sugar spike)?
Is Dr. Levetan your endo? Thanks so much for all of this info. Jessica
That’s a place to start, yes! In the winter, I took it at 9pm, +/- 15 minutes, plus morning at 9am. 500mg each.
Now that spring is here, I’m taking it 8pm/8am, but might need as early as 7:30pm.
For me, I had DP before metformin, and it only helped. But I am so sensitive that I found my basal rates were off on timing if I took metformin too early or too late. I personally have to be that precise. In everything T1!
She was for a few years, early in my diagnosis! Then she moved hospital networks, and was out of network . But I found another just like her, so I’m ok. And we’re still in touch!
I will take my first dose tonight.
I will initially cut my basal in half, and double my correction/bolus numbers so that I can play it safe.
I usually run VERY aggressive numbers with Control IQ and Lyumjev U200. I definitely have insulin resistance, so I am hoping this can help me in a few areas.
I am wondering how you are doing now that it’s been about a month. I hope all is well.
I figured it was better to bump an older post then to start a new.
I had my first visit with my new Endocrinologist today. We spoke about many things & I feel she is a keeper. That said she was opening to prescribing Mounjaro but she did caution that it can cause Retina issues.
Considering I am a one eye wonder with a lot of Retinopathy, Acute Glaucoma with Cataract Surgery. It’s given me pause to think & to ask does anyone else have any experience with Mounjaro or equivalent in regard to vision issue?
I would love to limit my spikes & have better insulin sensitivity but not at the risk of my sight.
It seems that each one has it’s own separate risks and rewards.
As for me, it has been going well/great.
First three days were a lot of nausea.
I cut my basal in less then half and really chopped my correction/bolus. I had to increase the bolus a little though.
I find that my sensitivity has increased. But this can be explained twofold. The Ozempic itself, and the lower amounts of food that I am eating.
That being said, I have had a much better time controlling my highs AND lows since taking this. Obviously eating less is a large part of this.
This sunday I will up my dose to the .5 from the .25
So I will see what next week’s changes bring to the table for me.
. But I found another just like her, so I’m ok. And we’re still in touch!