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Any Type 1s had experience with Mounjaro/GLP-1 medications

C

Catherine-louise

Active Member
Relationship to Diabetes
Type 1
Hi All
I’m sorry if this has already been posted about/I am repeating but just wanting to know if anyone has had any experience of GLP1 Meds while having type 1 diabetes. I know that it isn’t available or licensed on the NHS but I have read quite a number of studies which show promising results.

I am desperate to try it as a treatment for my type 1, weight loss and insulin resistance. But I am worried about potentially dangerous side effects much as increase in hypos but more worryingly DKA.

I have my NHS diabetic consultant, but she was unable to advise. I told her that I would be willing to pay for the medication privately but wanted to do this safely and wanted her advice and guidance, but she was unable to provide this.

I have since approached a few private endocrinologist and diabetologist and spoke to their secretaries, two of whom were deliberately vague and told me only that the Consultant sees type one diabetes patients and “ prescribes Mounjaro where a appropriate”. On questioning this further she told me that there would be no guarantee that the consultant would prescribe me this medication. I advised her that I didn’t want a guarantee of this but I needed to know if he was going to tell me that this medication was unsafe in type one Diabetics as there would be no point to a consultation. she was unable to do this and said that I would need to speak to the consultant at £300 a time. As you can imagine I’m not willing to do this without a guarantee that the Consultant is willing to work with me.

Would be really keen to hear from other type on Diabetics who have had success with this medication and for recommendations for Specialists.

Thanks in advance, Catherine
 
I think GLP-1s are considered to be most effective for weight loss - I’m not sure I’ve heard of GLP-1s having much of a positive effect on insulin sensitivity (except that weight loss can improve sensitivity)?

There are concerns over hypoglycaemia, and DKA (though more DKA concerns with SGLT2s I think.

These links have some more information about GLP-1s in T1 Diabetes

pubmed.ncbi.nlm.nih.gov

GLP-1 Agonists in Type 1 Diabetes Mellitus - PubMed

The use of GLP-1 agonists should be considered in T1DM patients who are overweight or obese and not at glycemic goals despite aggressive insulin therapy; however, tolerability of these agents is a potential concern. Liraglutide has the strongest evidence for use and would be the agent of choice...
pubmed.ncbi.nlm.nih.gov pubmed.ncbi.nlm.nih.gov

Off label use always needs careful consideration, and consultation with your Dr.
 
Catherine-louise said:
Hi All
I’m sorry if this has already been posted about/I am repeating but just wanting to know if anyone has had any experience of GLP1 Meds while having type 1 diabetes. I know that it isn’t available or licensed on the NHS but I have read quite a number of studies which show promising results.

I am desperate to try it as a treatment for my type 1, weight loss and insulin resistance. But I am worried about potentially dangerous side effects much as increase in hypos but more worryingly DKA.

I have my NHS diabetic consultant, but she was unable to advise. I told her that I would be willing to pay for the medication privately but wanted to do this safely and wanted her advice and guidance, but she was unable to provide this.

I have since approached a few private endocrinologist and diabetologist and spoke to their secretaries, two of whom were deliberately vague and told me only that the Consultant sees type one diabetes patients and “ prescribes Mounjaro where a appropriate”. On questioning this further she told me that there would be no guarantee that the consultant would prescribe me this medication. I advised her that I didn’t want a guarantee of this but I needed to know if he was going to tell me that this medication was unsafe in type one Diabetics as there would be no point to a consultation. she was unable to do this and said that I would need to speak to the consultant at £300 a time. As you can imagine I’m not willing to do this without a guarantee that the Consultant is willing to work with me.

Would be really keen to hear from other type on Diabetics who have had success with this medication and for recommendations for Specialists.

Thanks in advance, Catherine
Click to expand...
Hi Catherine, I’m also a T1D and enquired about Mounjaro at my diabetic review at the doctors as my weight has massively increased to 120kg during lockdown, they referred me to the diabetic team at my local hospital, on my NHS app it stated that they were going to start me on it but at my appointment the doctor refused completely and offered to start me on Metformin, I was so upset and disheartened by her decision! A couple of weeks later I seen a Facebook post on the local city page and ended up getting in touch with a nurse practitioner who offers Mounjaro to T1D so decided to go for it! I have been on it for 2 weeks now, having my 3rd injection tomorrow and had no hypo’s or side effects, I have reduced my long acting insulin from 32 units to 18 units and reduced my rapid acting according to what I eat, it has massively reduced the amount I eat and therefore reduced my rapid acting insulin dosage! I am using the libre sensors which is a massive help to monitor sugar levels! Hope this helps you.
 
Google comes up with lot of info on this hot topic. Please do your own research and consult your doctor for medical advice.
 
Last edited:
I have it prescribed currently. I'm a Type 1, rediagnosed from being a Type 2 4 months ago, and had it prescribed by my NHS Consultant at the time of rediagnosis. Off licence but they reckon it should be licensed soon for Type 1.

I'm working my way up the doses - slowly - doing 8 weeks at each dose before moving up. It does change my carb ratios each time, and I have some side effects on the first dose at each level, but they settle down.
 
Emsi said:
Hi Catherine, I’m also a T1D and enquired about Mounjaro at my diabetic review at the doctors as my weight has massively increased to 120kg during lockdown, they referred me to the diabetic team at my local hospital, on my NHS app it stated that they were going to start me on it but at my appointment the doctor refused completely and offered to start me on Metformin, I was so upset and disheartened by her decision! A couple of weeks later I seen a Facebook post on the local city page and ended up getting in touch with a nurse practitioner who offers Mounjaro to T1D so decided to go for it! I have been on it for 2 weeks now, having my 3rd injection tomorrow and had no hypo’s or side effects, I have reduced my long acting insulin from 32 units to 18 units and reduced my rapid acting according to what I eat, it has massively reduced the amount I eat and therefore reduced my rapid acting insulin dosage! I am using the libre sensors which is a massive help to monitor sugar levels! Hope this helps you.
Click to expand...
Hi Catherine, would it be possible for you to let me know the name of the Nurse Practitioner you use? I’m T1 and my diabetic consultant has recommended Mounjaro to me and has said she will support me taking it but can’t prescribe it to me. I can’t find a pharmacist who is willing to even discuss the matter! It’s crazy because there are Type 1 diabetic being prescribed Mounjaro on the NHS!
 
turnerowl said:
Hi Catherine, would it be possible for you to let me know the name of the Nurse Practitioner you use? I’m T1 and my diabetic consultant has recommended Mounjaro to me and has said she will support me taking it but can’t prescribe it to me. I can’t find a pharmacist who is willing to even discuss the matter! It’s crazy because there are Type 1 diabetic being prescribed Mounjaro on the NHS!
Click to expand...
Welcome to the forum.
People are very cautious about naming individuals in the NHS as this is a public forum and it would be against GDPR policy for that to happen.
People may mention which Health Authority their care is from but not individuals by name.
 
I think it is also against forum rules !
I have seen a couple of programmes lately on the so called fat jab, and scams use social media, to illegally sell these drugs.
 
Aah okay, I didn’t know that, sorry.

I’m just so upset because I need this drug and I’m being stopped from accessing it when other Type 1’s are being given it for free on the NHS! I’m prepared to pay for it and I still can’t have it!

If anybody can give me any advice please do.
 
Is it against the rules to send a PM (private message) proposing to exchange contact details with one another?
 
JITR said:
Is it against the rules to send a PM (private message) proposing to exchange contact details with one another?
Click to expand...
If it isn’t then my inbox is open to any friends who may be able to assist me. Thank you.
 
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