Contacts or thoughts

[OrsonKartt]

Hi there

I was diagnosed ten years ago. Was never told what other than diabetes but guessed type 2. I suspected I may not be a straight forward case a few years later.

Sadly the nhs has in my experience has been dismal.

I was initially told not to self test as it causes anxiety

I took myself onto a six week diabetes course at kings hospital then another in nutrition

I did and have pretty much always ate to my meter in a very very low carb way

Every year my hba1c went up and I would double down on cutting carbs and being active

I had a private c-peptide test done about five / six years ago and it was still in the low but normal range .

Of late I’ve been losing weight, at the mo my bmi is about 18. Despite piling into the cream butter and fat .

Last week I had another c-peptide and hba1c done. Still in the pre-diabetic numbers for hba1c but now under the norm for c-peptide

I went for this testing as my energy levels are so darn low I have to ration them out , I have brain fog , generally feel ill and have neuropathy in my left foot . I fell a couple of times a few weeks back which at the tender age of seventy one hurts.



As a matter of interest I put all my numbers into chat GPT and the logical course of treatment is low dose insulin.

 

[debs248]

No answers but I suspect my diabetes may not fit with the typical nhs profile either. Still early days, it's hard to believe it's only been 10 weeks since diagnosis. Will see what happens at my "initial review" next month. Best of luck finding an endo.

 

[OrsonKartt]

No answers but I suspect my diabetes may not fit with the typical nhs profile either. Still early days, it's hard to believe it's only been 10 weeks since diagnosis. Will see what happens at my "initial review" next month. Best of luck finding an endo.

Thank you. Also fingers crossed for you

 

[Speedbird]

Hi there

I was diagnosed ten years ago. Was never told what other than diabetes but guessed type 2. I suspected I may not be a straight forward case a few years later.

Sadly the nhs has in my experience has been dismal.

I was initially told not to self test as it causes anxiety

I took myself onto a six week diabetes course at kings hospital then another in nutrition

I did and have pretty much always ate to my meter in a very very low carb way

Every year my hba1c went up and I would double down on cutting carbs and being active

I had a private c-peptide test done about five / six years ago and it was still in the low but normal range .

Of late I’ve been losing weight, at the mo my bmi is about 18. Despite piling into the cream butter and fat .

Last week I had another c-peptide and hba1c done. Still in the pre-diabetic numbers for hba1c but now under the norm for c-peptide

I went for this testing as my energy levels are so darn low I have to ration them out , I have brain fog , generally feel ill and have neuropathy in my left foot . I fell a couple of times a few weeks back which at the tender age of seventy one hurts.


Has anyone here used and can recommend a private endocrinologist? If so I would warmly welcome contact

As a matter of interest I put all my numbers into chat GPT and the logical course of treatment is low dose insulin.

I’ve sent you a pm.

 

[Daibell]

I went thru the same process with a private C-Peptide being below normal. I believe the level for T1 diagnosis is too low. I've been on Basal/Bolus for 7 years or so and know that my beta cell output is lower than many 'official' T1s diagnosed because they have antibodies (I don't have any) and suspect a virus caused my beta cell issue. Do push for insulin if needed to control your BS. I was initially refused insulin which I really needed.

 

[AndBreathe]

Hi there

I was diagnosed ten years ago. Was never told what other than diabetes but guessed type 2. I suspected I may not be a straight forward case a few years later.

Sadly the nhs has in my experience has been dismal.

I was initially told not to self test as it causes anxiety

I took myself onto a six week diabetes course at kings hospital then another in nutrition

I did and have pretty much always ate to my meter in a very very low carb way

Every year my hba1c went up and I would double down on cutting carbs and being active

I had a private c-peptide test done about five / six years ago and it was still in the low but normal range .

Of late I’ve been losing weight, at the mo my bmi is about 18. Despite piling into the cream butter and fat .

Last week I had another c-peptide and hba1c done. Still in the pre-diabetic numbers for hba1c but now under the norm for c-peptide

I went for this testing as my energy levels are so darn low I have to ration them out , I have brain fog , generally feel ill and have neuropathy in my left foot . I fell a couple of times a few weeks back which at the tender age of seventy one hurts.



As a matter of interest I put all my numbers into chat GPT and the logical course of treatment is low dose insulin.

I have used a private Endo, although for my thyroid. I saw him once privately then he instructed my GP to make a named referral back to him, and at the same time a massive number of tests. Whilst I see him for my thyroid, he takes a keen interest in my T2 and states repeatedly he reckons I'm slow onset T1. 12 years is pretty slow in my book!

I'd happily share the details of my chap (off thread), but he's in the Midlands and only does 1 private session a month, due to NHS and research commitments.

 

[OrsonKartt]

I went thru the same process with a private C-Peptide being below normal. I believe the level for T1 diagnosis is too low. I've been on Basal/Bolus for 7 years or so and know that my beta cell output is lower than many 'official' T1s diagnosed because they have antibodies (I don't have any) and suspect a virus caused my beta cell issue. Do push for insulin if needed to control your BS. I was initially refused insulin which I really needed.

Thanks for your thoughts

I’ve now sent an email to a private consultant. Obviously it’s the week end but I have had an auto mail back saying they will contact me

I’ll chase it if they don’t .

 

[OrsonKartt]

I have used a private Endo, although for my thyroid. I saw him once privately then he instructed my GP to make a named referral back to him, and at the same time a massive number of tests. Whilst I see him for my thyroid, he takes a keen interest in my T2 and states repeatedly he reckons I'm slow onset T1. 12 years is pretty slow in my book!

I'd happily share the details of my chap (off thread), but he's in the Midlands and only does 1 private session a month, due to NHS and research commitments.

Thanks for your thoughts. I’ve now made contact with a private consultant in London. It’s a bit of a journey but the trains are ok

It’s such a wonderful resource here on this forum. Thank you all !!