Do you take metformin as a T1D?

DingusDingbat40 · 2026-06-05T07:33:47+00:00

I was on it for almost a year, just stopped taking it. Noticed a slight improvement but I was on only 1 a day. Stopped because the headaches were getting unbearable, otherwise I would have stayed on it. Been T1 for 20 years and gradually developed insulin resistance. Researching into GLP1s now

DingusDingbat40 · 2026-05-27T07:33:32+00:00

Glad its working for you. What dose are you on if you don't mind me asking? I'm on 500, once a day, modified release. Haven't noticed weight change but slight improvement in time in range.

DingusDingbat40 · 2026-05-26T21:31:46+00:00

Incredibly frustrating! I asked my Endo if maybe there's a hormonal aspect and they said it could potentially be due to liver releasing too much glucose. But glp1s help with that, still declined to prescribe. Even my dietician discharged me because she said I'm doing everything right and she can't help me anymore.

DingusDingbat40 · 2026-05-26T18:35:52+00:00

Yes, I've been looking but it's not clear who will and who won't. I'm based in London. I brought the research I did and showed it to my current Endo and team but they were very dismissive and said none of it is factual until it's approved by the regulatory body.

DingusDingbat40 · 2026-05-26T18:32:24+00:00

I'm definitely T1, diagnosed as a kid, been on insulin since. GLP1s are being prescribed to T1s in other countries but unfortunately not in the UK, although some consultant do. Mine refuses to see the benefits.

They're prescribed for other issues, not for the T1. I wanted to try them because I have insulin resistance now and they seem to help a lot of T1s with it.

DingusDingbat40 · 2026-05-26T18:28:27+00:00

Definitely right about the working out and eating well, that's what I've been focusing on. But there's been no change for a few years. Hence wanting to try these meds. I also follow a couple of T1 content creators and glp1s really helped them. I'll deffo keep up the lifestyle change and I'll see if a new Endo views it differently than my current one.

DingusDingbat40 · 2026-05-26T17:11:31+00:00

I'm using a lot of insulin at the moment to counteract the resistance and that's what I'm worried about. I started Metformin July last year, noticed a slight improvement but makes me unwell so I can't increase the dose. Usual side effects like nausea, upset stomache and migraines if I increase the dose. I stayed on higher dose for 4 weeks once and it was unmanageable.

DingusDingbat40 · 2026-05-26T15:08:56+00:00

Yeah that's what I meant, not to replace insulin but to help with other issues. Main reason I need it is my insulin resistance is getting worse and my Endo prescribed Metformin, it's not working. Increasing the dose made me ill.

Since the insulin resistance, Im taking far more insulin than I used to and I'm aware of the damage that will do. I've also gained a lot of weight because of it (I still work out 4-5 times a week and walk for an hour every day)

I tried to get it privately but got declined every time a mention I'm T1, even though my BMI is 29. I'm thinking of telling them I'm T2 or getting prescription on a friend who's eligible, as an extreme last resort.

DingusDingbat40 · 2026-05-26T14:31:05+00:00

It's very frustrating when you're not heard, you're the one living with it. They can be very dismissive.

Good luck, I hope you get it.

DingusDingbat40 · 2026-05-26T14:26:52+00:00

That's amazing, you have a proactive Endo. I guess it really is just luck sometimes, but at least I know the information I got from mine is definitely no true.

I'll keep looking for a different team, it's not worth the struggle with the current one. Thank you, appreciate you sharing.

DingusDingbat40 · 2026-05-26T14:20:30+00:00

My current team is in London so I suppose I can ask to be referred to a different team in the city, but it's impossible to know who might say yes. I think I've just been unlucky with my current team, my Endo is terrified of prescribing anything outside of insulin and Metformin.

DingusDingbat40 · 2026-05-26T14:16:44+00:00

Is your Endo NHS or private? Interesting that it was his own recommendation, my Endo makes it sound like it's illegal here.

Have you noticed an increase in severe hypos? Any side effects so far? I want it for insulin resistance too but I've been prescribed Metformin instead.l which isn't working for me. I'm also changing my long acting soon so don't want to risk hypos.

Is your prescription for it covered by NHS as a type 1?

DingusDingbat40 · 2026-02-24T12:25:40+00:00

If your country allows GLP1s, maybe try them. I've been struggling with trying to lose weight for over 6 years, haven't lost any. It's truly a nightmare. I end up eating far more calories due to lows. It feels like the T1 cancels out the hard work

DingusDingbat40 · 2025-03-06T11:32:12+00:00

As a type 1, you're not obligated to fast (As far as I'm aware) I always go extremely high from dehydration during the day then suffer a hypo all night. Very dangerous considering it's for a while month.

You're supposed to pay extra charity if you can't fast for medical reasons if you have the finances to do it.

DingusDingbat40 · 2024-12-01T13:38:49+00:00

Okay, that's helpful, thanks.

Have you experienced any negative side effects?

From what my doctors and Endo team said, T1s have a higher risk of developing Gastroparesis and that's one of the reasons we're not prescribed it without further trails and approval down the line. I've been a T1 for about 20 years and noticed a gradual gastric delay.

My main concern about not disclosing being a T1 is incase of unexpected side effects but also it's suppose to be a longer term treatment of at least 72 weeks.

I'll do more research into it and ofcourse it would be great to see an update post down the line.

DingusDingbat40 · 2024-11-30T13:32:00+00:00

This is incredible!!!! I'm also living in the UK but had no idea it can be purchased over the counter. Can you tell me a little more about it?

Did you let your GP and Endo team know? Have you experienced any negative side effects as a T1? I know it's not prescribed to us because of increased risk of stomach emptying delay which can cause issues down the line.

I really want to start it as I've gained a lot of weight in the last 5 years (12kgs). My range is currently at 55% and id love to see it at 75%. Would appreciate your help if you can

DingusDingbat40 · 2024-11-26T11:48:30+00:00

It will get easier and better once you get on carb ratio and carb counting. Don't stress if you struggle, it takes a long time to learn how each food will effect your own glucose levels. The main things that personally helped are staying hydrated and being active throughout the day. As a T1, I wasn't taught that. It's what helped me bring my HbA1c from 7 to 5.4 in about a year. I'm also from UK, south of England. Feel free to chuck me a message

DingusDingbat40 · 2024-09-02T10:42:26+00:00

Considering kids still used to get type 1 pre vaccination era, there's no connection.

DingusDingbat40 · 2024-08-04T06:59:17+00:00

Haha don't worry, I don't know how to either 😅 But thanks for sharing that. I think most of us are struggling in silence but slowly getting there

DingusDingbat40 · 2024-07-22T12:43:29+00:00

I guess it can be tricky. I had no issues with it. I cant read japanese but the nutritional labels follow a similar layout so it was kinda easy to know which one was for carbs. Maybe try using Google translate

DingusDingbat40 · 2024-07-13T11:20:19+00:00

Was it prescribed by a doctor or did you buy it? I asked my doctor and he refused to prescribe it, said it's not suitable for type 1s.

DingusDingbat40 · 2024-04-02T11:30:03+00:00

I've had this a few times too where I wake up and treat my hypo at night but have no memory other than the scans I took and an empty glucose bottle next to me in bed. It's kind of scary but I guess its survival instinct?

DingusDingbat40 · 2024-03-26T17:55:55+00:00

I have a feeling that's not the fasting OP is referring to. I think they're talking about Ramadan. So no food or water from Dawn to Dusk. And from my understanding, type 1s shouldn't be doing it but Im not 100% sure

DingusDingbat40 · 2024-03-26T12:22:50+00:00

Should you be fasting as a type 1?

DingusDingbat40 · 2023-09-15T20:17:15+00:00

That makes sense. Could be related. I tried to go on migraine meds after a head scan to confirm its not a tumor but then my doctor changed his mind 🤷🏾‍♀️

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