I Am a Type 1 Diabetic on Weight Loss Injections - AMA

[BelindaLouisa]

As the title says really!

How on earth did you manage to get them? I was told we can't be prescribed them as they're not licensed for type 1s...?

What was your last HBA1c?

Are you on a pump and sensors?

@PloddingDaily I opted to ‘tell my GP myself.’ Madly, it was an endocrinologist who suggested it in the first place, largely due to big increases in insulin resistance and my weight going up (peri menopause also adding to that.) Diet alteration such as lower carb wasn’t helping as much as it could (I have severe dawn phenomenon so my glucose would shoot up and stick every morning regardless of corrections.)

@funtimetoni the one last August was 76 and the one a week ago was 60

@funtimetoni I am on a sensor but no pump. The waiting list is 3 years apparently - I am hoping to eventually get an Omnipod .

@PloddingDaily I had no idea they would be suitable for T1 either, and they are certainly not currently licensed, but it turns out it’s being prescribed off-label in the US and there are also small studies to show, regardless of weight, that it could hugely help with T1 management and offers protection to major organs such as our kidneys (I am assuming you too are T1?). There is also a large scale study going on in Finland apparently (endo told me this, I can’t find you a link - sorry!)

Did your consultant recommend it then? The gp I saw just said they'd refer me to a weight management service but I have heard nothing since. Also in peri, weight stubbornly stuck seemingly no matter what I do. Exercising is HARD because of it and my knees sound like maracas when I walk upstairs. I HATE how I look & feel, it's really getting me down. I'm so fat & tired, and fed up! Even if I can stick to 1200 cal a day nothing seems to shift, although it seems to fluctuate up to 3kg.

And to add insult to injury I can't get the insulin pens I need as back up in case of pump failure because I suspect the manufacturer has switched over to weight loss jabs! You couldn't make it up.

Have you had much success so far? Thanks for sharing your experiences!

It was suggested in a roundabout way. I suspect as they can’t directly recommend them, instead it was said as ‘a patient of mine who’s T1 used Mounjaro…’ At the time I was crying in his office over all the frustrations with T1 and it all being so complicated. I wasn’t huge, I was 13st 13 so far far too big for five ft 4 but i was unable to shift the weight. I had a personal trainer, I eat well but it felt like everything was two steps forward and one back. Plus, the months I had had on HRT resulted in further weight gain, hence further insulin resistance etc. I suspect you get the picture!

I found 1200 calories a day very hard, it was unsustainable long term (I am very active.) Also, throw in a hypo or two and it’s over 1200 anyway! I also needed a lot more insulin in the first part of the day and much less at night (long acting, I mean.) This is largely why I now want a pump.

You may find this interesting. It’s not just about the weight angle.

I am now on a lot less insulin, have significantly less issues with stubborn highs in the morning and things like my cholesterol, which wasn’t high to start with, has dropped.

This is interesting too.

Unfortunately though, I think the chances of T1 getting it via the NHS any time soon are very slim. I am also in a panic about the new restrictions!

Many thanks for the links! I will try the consultant again but I'm not particularly hopeful...

Have you managed to lose much weight?

I've been told that they can't officially prescribe as it's not yet in guidelines, hence me having to lie about it to the (actually very good) pharmacy I buy it from. It's incredibly frustrating as it's helped with my weight, but also with numerous other things - which I think I mentioned before.

I've lost just over two stone, but over five and a half months, and my diabetic 'risk factors' have also been substantially reduced. Previously, I was struggling to lose weight and it felt so hard with all the T1 stuff as well, and now it has been pretty much effortless.

I really hope that the T1 element and trials get more attention and the knowledge of the benefits of this drug become more widespread. At the moment it seems to be focused solely on the weight aspect, which isn't even half the story.

Oh, and previously I had tried Metformin to help with the insulin resistance and it did not agree with me at all. The long acting one was no better. It made me feel ill with, erm, toilet concerns.

I was also advised to go on statins. Not due to high cholesterol but as it is recommended for T1's over 40. I have now been told that it'd be 'ridiculous'. There is something linked to your kidneys that provides protection to too, as well as the more obvious heart stuff (I'm sure you'll find it if you Google.)

If I can't get hold of it any more, I am back to square one with a lot of things. It's so frustrating! I can completely understand the need for more checks, but also, from my point of view, really wish it wasn't likely to impact me!

Sounds like it's working brilliantly for you!
Would you mind messaging me about which pharmacy you are using please? I tried to get it online but the ones I tried all want to contact the gp and I stupidly admitted to type 1 diabetes so they said they couldn't prescribe it to me.
I'm just desperate, it's like EVERYTHING has to go perfectly for WEEKS to lose a pound, then one bad hypo, or one less than ridiculously low cal DAY and BAM! Back to square one. It's soul destroying.

I’ve tried to DM you and it says it’s ’disabled.’ Can you DM me?

I completely empathise with your frustrations too! It feels like your body is conspiring against you, doesn’t it.

I am a runner, so I am fit but also need to carb load pre run. So my fitness is good but it’s counteracted by weighing more than I should. 1200 calories made me miserable. I can maintain it for a bit but it’s not sustainable long term. Add on having to have extra insulin due to morning highs, and menopause hormone issues and it’s an effing nightmare!

These are from American sites.

There is also plenty of official research and info online too. Put ‘tirzepatide’ rather than Mounjaro.

I think there will be so many type one diabetics who are in the similar frustrating situation as we have found ourselves.

I don’t really know what me posting about it on mumsnet will do, particularly now the regulations are due to be tightened up, but I am evangelical about how much it has made things easier for me.

An endocrinologist colleague (who has an interest in bariatrics and diabetes) does this at a dedicated NHS clinic ….

Oooh, where please Khaa2091?

Eek - not sure what that's about, will trying logging in on a computer later (on my phone at the moment).

Yes, it's extremely frustrating... pre pump it always felt like I could control the sugar levels or the weight gain but not both, and that's the legacy I am stuck with now

Closed to out of area referrals!
As I understand it patients who might benefit are triaged locally, but there is definitely a lot of interest..
(Coi, not an endocrinologist, not diabetic and not involved with these patients but have heard about it.)

@khaa2091 what is the context? Specifically for weight loss, or general T1 management?

I think we cross posted!

@BelindaLouisa specifically in the context of weight loss in type 1 diabetics under secondary care. They had previously advocated and supported patients receiving bariatric surgery and it has continued from there.
from memory, v strict BMI criteria but I don’t know much more.

Interesting!

Pms are off currently due to the sending of csa images!