Thinking of trying Mounjaro - advice?

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christian181

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Type 2
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Hi all

Just joined. I have t2d, diagnosed five years ago. It is pretty advanced and impactful.

I'm 52. I use fast and slow insulin plus metform, and a libre chip (I paid for this for three years but now get it on nhs). I inject four to six times a day. I am in range with my blood sugar about 65%, and keep v high blood sugar readings to below 5%.

I have bad neuropathy in my legs and a little in my hands.

I walk about 16,000 steps a day. I sleep well. I weight train five times a week and play padel weekly. This all helps to keep the pain just the right side of tolerable, but there is still slow progression all the time of my symptoms. I have a good pescetarian diet: eat lots of veggies plus protein (beans, eggs and oily fish), lots of good fats and a small amount of carbs.

I take magnesium, b12, fish oils, vit D, iron/vit c supplements.

My leg pain these days stops me for working sitting down for more than a few mins. I can drive only short distances. It is quite limiting, as you can imagine.

I am 6ft 3 and 17 stone but but with a lot of muscle. Body fat about 20%. I have always struggled to get it much below 18%, despite being disciplined and motivated.

I am thinking of trying tirzepatide (Mounjaro) to see if it could help me get body fat 15% of below to see if that might improve my pancreas function. It might be a slim chance but I feel there is some evidence that this might work, and I have not ever managed this in five years of trying.

I will have to pay I am sure but even if only a small chance of improving my insulie sensitivity/production by tipping the right side of my personal body fat/abdominal fat threshold I like the idea of giving it a go.

What do people think? Any personal experiences with it? Or should I just knuckle down for one last concerted effort to lose the body fat without help?
 
I have t2d, diagnosed five years ago. It is pretty advanced and impactful.

I'm 52. I use fast and slow insulin plus metform, and a libre chip (I paid for this for three years but now get it on nhs). I inject four to six times a day. I am in range with my blood sugar about 65%, and keep v high blood sugar readings to below 5%.

I have bad neuropathy in my legs and a little in my hands.

I walk about 16,000 steps a day. I sleep well. I weight train five times a week and play padel weekly. This all helps to keep the pain just the right side of tolerable, but there is still slow progression all the time of my symptoms. I have a good pescetarian diet: eat lots of veggies plus protein (beans, eggs and oily fish), lots of good fats and a small amount of carbs.

I take magnesium, b12, fish oils, vit D, iron/vit c supplements.

My leg pain these days stops me for working sitting down for more than a few mins. I can drive only short distances. It is quite limiting, as you can imagine.

I am 6ft 3 and 17 stone but but with a lot of muscle. Body fat about 20%. I have always struggled to get it much below 18%, despite being disciplined and motivated.

I am thinking of trying tirzepatide (Mounjaro) to see if it could help me get body fat 15% of below to see if that might improve my pancreas function. It might be a slim chance but I feel there is some evidence that this might work, and I have not ever managed this in five years of trying.

I will have to pay I am sure but even if only a small chance of improving my insuline sensitivity/production by tipping the right side of my personal body fat/abdominal fat threshold I like the idea of giving it a go.

What do people think? Any personal experiences with it? Or should I just knuckle down for one last concerted effort to lose the body fat without chemical help?
 
Hi and welcome.
Really sorry to hear that you are struggling so badly with neuropathy.

Would you like to tell us a bit about your diabetes and how your diagnosis came about. The reason I am asking is because I wonder if you might perhaps be a misdiagnosed Type 1, rather than Type 2. If that is the case then you might be wasting your money on Mounjaro.

5 years is quite a short time for such bad neuropathy to develop unless it was uncontrolled or poorly controlled for quite some time, so just wondering if you perhaps needed insulin sooner but an HCP persevered with oral Type 2 meds too long. Of course 5 years means that your early years of diagnosis were during Covid, so perhaps limited support as a result of that.

The fact that you sound pretty fit and seem to have a good diet but need insulin after only 5 years just makes me wonder about your diagnosis. There are lots of us here who were misdiagnosed later in life with Type 1 after an initial Type 2 diagnosis and many Gps and nirses just assume you are Type 2 if you are a mature adult. Some of the red flags for Type 1 are a very high HbA1c at diagnosis sometimes with sudden onset of symptoms (thirst and weeing lots etc) and perhaps Diabetic KetoAcidosis and perhaps some unexplained weight loss or not responding to first line Type 2 meds. If you are Type 1, your pancreas is unlikely to improve function with a bit more weight loss, but you would get better support with your diabetes management. 65% TIR is good but with some better support/education/tech you might be able to improve that which would obviously help prevent further degeneration.

Are you on any meds for the neuropathy? Gabapentin, Pregabalin and Amitriptyline are the commonly prescribed ones. Have you seen a specialist about it?
 
Hi Barbara. Thanks for your detailed reply. I'm not on any meds for neuropathy yet but I know that's the next probable step. I've been trying to keep it at bay.

I waited three years to see a consultant and he was quite odd and hard to communicate with when we did meet. I got what I needed from him insulin-wise and chip-wise but it means I have not pursued a follow-up. That was a year ago.

I was diagnosed at 47. I had a DVT/PE and keeled over one day with breathlessness. When the ambulance came they checked my blood sugar, which was over 20. They took me in and the next day I had a calf DVT and then a scan showed a pulmonary embolism. I've been on apixaban since. A month later I was found to have bowel cancer. Op was a success but the diabetes was a bit of an afterthought. It took two years to recover from the PE and the surgery and to get back to work. In that time I was treated as t2d and just given metformin and gliclazide but my blood sugar was impossible to control. I walked a lot and avoided carbs as best I could. Nurse suggested after a time it might be 1.5 type but later I had a test that seemed to rule that out. I cannot remember the name.

Anyway, by the time I was back on my feet from everything I was just starting to be in constant pain, and pushed and pushed. 12 months later or probably longer I got to the consultant. I had been paying for my own chip for two years by that point. 2 and half maybe. Just to have some idea. I had slow release insulin from two years ago and then the novorapid stuff once I got to the consultant.

My HbA1C is now much improved. It was in the 90s when diagnosed and I got it only to about 70 without the fast insulin. Now it is low 50s. But it feels like the meantime the damage has been done.

I may be be barking up the wrong tree with weight loss drug thoughts but prepared to try anything. I am thinking maybe a keto diet as a next step.

I have always kept fit (lots of running, now weights) and eaten well, but always had a tendency to carry some weight on my abdomen. I was very premature at birth and it is a common complication I've been told.
 
What sort of doses of insulin do you take? Lower doses generally suggest Type 1/LADA, higher doses indicate insulin resistance which is generally associated with Type 2.

Was the test you had a C-Peptide test and if so was it a urine or blood sample? The blood sample needs to be frozen within 20 mins of being drawn and conveyed to the lab frozen, so generally it is taken at hospital where they have the facilities to freeze it quickly.... just thinking you might remember if you had to attend the hospital for the blood test. The urine test is less reliable but there is no special sample handling so it is generally more convenient. The other test is looking for antibodies because Type 1 is an autoimmune condition where the immune system kills off the beta cells in the pancreas which produce insulin. In adults this sometimes happens slowly or in stages, perhaps triggered by a virus or other illness, so it can sometimes present the same as Type 2, in the early months or even years for some people and respond to dietary/lifestyle changes and perhaps also Type 2 meds. Sometimes the antibodies fade over time so if they are the only test done and conducted years after the initial diagnosis, they mad not give a positive result, which is why both the C-peptide and antibody tests should be done sooner rather than later if there is any doubt and the two results considered along with clinical presentation. It would be interesting to know which test was done and what the result was. Those results should be recorded on your NHS app or GP practice system.

I assume by "chips" you are referring to a Constant Glucose Monitor (CGM) like Libre 2 or Dexcom? It is good that you now get those on prescription.
 
Thanks, Barbara. Super useful. Yes, c peptide. I reckon it was a urine sample at GP practice. I will investigate on what basis I have been labelled t2d. I do have to take a lot of units of insulin, however, so perhaps it is the right judgement. But a lot of my advice from the diabetes nurses has felt inconsistent and pretty glib at times. They defer to some central team for advice but their ideas down the years have seemed just as scattergun. I'm in Bristol.

Yes, Libre 2 for CGM.
 
Welcome to the forum @christian181

Sorry to hear you’ve not quite seen the results you were hoping for despite all the effort you have been putting in. But glad you’ve found ways to keep your neuropathic pain at tolerable levels.

There are some previous threads discussing Mounjaro
forum.diabetes.org.uk

Search results for query: mounjaro

forum.diabetes.org.uk forum.diabetes.org.uk

And tirzepatide
forum.diabetes.org.uk

Search results for query: tirzepatide

forum.diabetes.org.uk forum.diabetes.org.uk

Which you may be able to browse for members’ experiences, and some snippets of research

All the best with your ongoing efforts to meet your weight / body-fat targets
 
I’ve merged your threads to keep replies and responses together @christian181 🙂
 
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