T1 and Mounjaro?

[Baconsarnie]

I know it's not licensed for T1 diabetics but does anyone know why? Is it just the possible nausea/not wanting to eat side effects or is there something else I don't know about?

I am T1 and looked into this. As far as I could tell it is based on concerns that a person would require a fraction of the insulin they would if eating to their normal pattern and could risk severe hypos. there is also evidence that a sudden drop in food (carb) intake could mean a persons HBA1C dramatically improves in a very short space of time which conversely is a risk for developing serious retinopathy.
My control was awful, I went on to a pump and CGM and it rapidly improved my HBA1c to the detriment of my eyes (I have no regrets about going to pump/cgm and maybe my eyes would have been in trouble anyway but all involved did warn me this was possible) I would hope if your control is so excellent that this drug is unlikely to change it, and you aren’t a big carb eater anyway you might be ok. But definitely ask your diabetes team.

Im interested in this too. All I've found is they haven't done enough research into it. I also read there's a danger of hypos as apparently your blood sugar levels drop, though as I am fully capable of adjusting my own dosage I'm not sure why this should be a barrier, and I would have thought that's a good thing (sugar levels dropping, not hypos obviously).
Ozempic and Wegovy seems available in the US for type 1 diabetics. I can't see any place that allows it for Type 1 here in the UK - it just says not available for Type 1 without saying why. I think it might be a matter of more research needed, though I don't understand why it seems to be taking so long as I've seen studies from 2023 saying how beneficial it is.

@TwoeightTwoeightTwoOhhhh I don't understand how improving your A1c would lead to worsening retinopathy. I though high sugar levels made this worse?

Not a doctor, can’t explain the science but it’s a known risk. Long term high blood sugars increase your risk of developing retinopathy but a sudden tightening of control is also a risk. This is from diabetes.co.uk

Oh yes forgot pics are under review. This is the text:

The longer a person has diabetes, the greater the risk of developing diabetic retinopathy becomes. However, keeping blood glucose levels well controlled can help to slow down the development of retinopathy significantly.
Be aware that a rapid improvement in blood glucose levels – defined as a drop in HbA1c of 30mmol/mol or 3% – can actually lead to a worsening of retinopathy.

www.diabetes.co.uk/diabetes-complications/diabetic-retinopathy.html

Thanks both. This is really helpful. My Hba1c is ok, probably could be better, but I had no idea about the retinopathy being caused by an improvement in control.

One of the articles I read about the drugs use in Type 1 said there had been an observed increase in eye issues but it’s really hard for the trials to prove that it’s the sudden improvement in HBA1c that’s causing it and not the drug itself.
Good or improved HBA1c is what we are all working on so it does feel like a trap that a drug that might help achieve that might be restricted because it does achieve that…
just one more trial in the life of a type 1 🤣
Fingers crossed it gets approved for us eventually even if we have to go really slow.

I wondered if insulin is cheaper than Mounjaro. Just a random wonder and I’m probably off the beaten track but not something I’ve ever looked up.

My brother who is on insulin as a type 2 is on Mounjaro, has a libre linked straight into the diabetic team at the hospital and whilst he is able to reduce insulin whilst on MJ it makes him pretty sick by all accounts to the point he has had to go right down to the mj starting dose of 2.5 but wants to go back fully to insulin.

I can't accept it's not licensed. I read it was but was then withdrawn. Due to hypo scares. They are just scared of being sued. It all comes down to money. So stupid.

My diabetic team categorically refused.

My diabetetic team has said they will ask my GP to perscibe it for me. Now comes the long wait for the actual letter to be sent to the gp (they are very behind with paper work I been told).

I'm currently using the close loop system. My doctor said I would need to be extra vigilant with my insulin and carry extra hypo treatment should I need it.

The first doctor who recommended it, showed me on the screen a side with my hba1c and the other side my weight. It was clear, when I had healthy bmi my hba1c was better. The more weight I put on, the worst hba1c was.

Last three years, my life has been challenging and I have eaten myself to obesity. I hope to take control over my eating. I hope to fit back into my clothes soon. It was a bit embarrassing to be shown the truth.

Do you mind me asking how much weight you want/have been advised to lose, Bread121bread?

To honest, myself and the doctors didn't focuse on the weight as much. The main goal was to get good hba1c.

My main concern was about the risks of hypo. The doctor said there hasn't been enough research. I know from my own life experience when I lose weight and/ or eat less, I get hypo here and there.

I have never been this big with a bmi of 34.8

I am on mounjaro and I am type 1. It is done with my knowledge that it is not licensed for me and I take the risk! Which I am happy to do. the problem is I haven’t lost any significant weight and been on it for a few months now

My GP refused to approve it for me (I was prepared to buy it myself, I wasn’t expecting a prescription) because of the hypo issue. It’s ridiculous - I’ve been T1 for long enough to manage my blood sugars and hypos whether I’m dieting or not. Oh, and he said that my BMI at 34.7 wasn’t high enough to justify it. He actually said “you’re not that overweight”. Ffs, I knew I was, I’m not stupid! I offered to eat a couple of Mars bars to push me over the bar, but he said that was just silly….anyway, turns out he could have put me on an NHS meal replacement plan if I’d been another couple of pounds heavier, but wouldn’t. So I did some research and found one myself - it was low calorie, low-carb, all the vitamins etc - and did that instead. I found it really suited me (I lost 15kg in just over three months, and though I stopped at Christmas I haven’t put much back in and my weight has been pretty stable. I do have a bit more to lose, so am going to have another couple of months on it.

I did have a few hypos as I adjusted to it, but nothing I couldn’t deal with, my eyes are fine, and my diabetic specialist is really pleased with my numbers. No thanks at all to my doctor though, I felt like I was bashing my head against a brick wall. I’d still like to try the injections, but for now there seem to be too many hurdles for T1s and I’m glad I’ve found something else that works for me.

It’s so frustrating though - life as a T1 is challenging enough every bloody day without having further obstacles thrown at you. Surely if you’re motivated to lose weight (and therefore help your long-term health) it’s not unreasonable to expected better support?

Exiting time for me. My hospital doctor has finally written the letter and uploaded it in my nhs app. Now, I need to make an appointment with a GP or at least stand in the queue to inquire if the gp could action the letter without seeing me.

In the letter it has the dose (2.5mg) and a recommendation of reducing my carb ratio by 10% and playing it by the ear (I rephrased this).

I started munjaro on Friday lunchtime and by dinnertime my appetite was gone, so i didn't eat anything. Which wasn't good as I woke up overnight because of a mild hypo.
Then on Saturday I only ate as a response to my pump alarm. I had 2 alarms before a low and 2 alarms on low. By that I mean it never went below 3.4.

So it wasn't too bad. However, on Saturday I stayed home all day, hardly doing anything. Just in case I experienced bad side effects I did a deep clean & shopping beforehand and dc stayed with family over the weekend. So my sugars should not have gone low.

Then yesterday, I woke up with an uti, which I sought treatment for. However, my pump is manging my blood glucose much better now. Only one alarm of approaching low today, while the highest reading I had was 11.

Only side effects I experienced has been nausea and loss of appetite. Not sure if I can attribute tiredness and body aches to munjaro.

This thread, whilst I'm really pleased for you all, has severely pissed me off, that my London hospital has refused, whereas you have all managed it somehow. I can't get my Diabetic Consultant to give it to me, won't agree, won't write to GP. 😡

I'm sorry to hear that you are struggling @Oblomov25. Which hospital are you with?I'm with Barts in London.

I don't know why your doctor refused it and I can't comment on that.

The munjaro left my body yesterday I think. First I started getting hungry again around lunch time. Then overnight I woke up four times to correct high sugar. Changing the cannula didn't work, I used novoRapid pens. My sugar was still 17.8mml this morning. Finally, I took my second dose. It has only been few hours but I'm back in single digits.

It is strange for my insulin sensitivity to change that much in one go. If this becomes a pattern I will ask if I can take munjaro every 6 days instead of 7.

Kings

My son type 1 lives in USA started on wegovy made him really I’ll

After my third dose of munjaro, the closed loop system knew what was coming and it adjusted my basal ratio. Which was great.

My in house gp pharmacist called me after the first munjaro pen was almost finished and she said I no longer qualified for munjaro as I my hba1c was improving and my weight was going in the right direction. She also said she didn't have to issue it as the doctor wrote "could" not must in the letter. So until she gets another letter from the consultant she won't issued anymore munjaro. She also said I could buy it if I was worried about diabetes.

I called my diabetetic nurse and explain what had happened. She said she will mention it during a staff meeting and she gave me the consultant secretary email. I emailed her and it took two weeks to get the letter. I knew they were busy and I'm very grateful to have been squeezed in.

I then waited a full week for the gp pharmacist to issue the prescription. My gp surgery is ring fencing their doctors. So I need to do the dance with the pharmacist. I got the pen on Friday.

Luckily, my GP had given me two munjaro pens the first time. So I haven't had a gap in treatment. I have however, lost a bit of trust in my gp. It is very concerning that something that has so much effect on blood glucose could be stopped, out of the blue.

I really don't want a stop, start munjaro. Meaning I would need 50% more insulin when they stop and then 50% less insulin when it starts again. It is petrifying.

This dose jump has given my symptoms. Chills and tiredness. The tiredness is manageable. I dislike chills and being cold. It had me worried about my hypothyroidism, until I re read the possible side effects of mounjaro.

I have lost visable weight!

I spoke to my normal pharmacists today and I was told it the mounjaro is not part of my repeat prescription. I don't want to go up a dose, just the next pen. I suppose this would mean I need to make an appointment with my in house gp pharmacist, to get more pens. This is ridiculous. Would this turn into a monthly meeting? Finger crossed they don't want a third letter from my consultant again.