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 !!

 

[OrsonKartt]

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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 .

I now have an appointment with an endo next week. Thanks all !

 

[OrsonKartt]

I now have an appointment with an endo next week. Thanks all !

Got to see the endo today

What a relief it was seeing someone who understood not only keto but carnivore way of eating

Equally relieved to be told that my self diagnosis of LADA was correct

He will be writing to my GP with the prescription


I know it will be a learning curve injecting but I’m prepared to learn and hopefully the general feeling of dis-ease and general illness will diminish

Thanks to all who responded to my call out for help !!

 

[Bcgirl]

Amazing, so happy your appointment was good! Best of luck with the new regime…..and sorry about the diagnosis.

 

[Speedbird]

Got to see the endo today

What a relief it was seeing someone who understood not only keto but carnivore way of eating

Equally relieved to be told that my self diagnosis of LADA was correct

He will be writing to my GP with the prescription


I know it will be a learning curve injecting but I’m prepared to learn and hopefully the general feeling of dis-ease and general illness will diminish

Thanks to all who responded to my call out for help !!

I’m so glad it’s worked out for you.

 

[OrsonKartt]

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I’m so glad it’s worked out for you.[/

Thank you.

 

[OrsonKartt]

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Amazing, so happy your appointment was good! Best of luck with the new regime…..and sorry about the diagnosis.

Thank you

I kind of guessed it a long time ago but was distracted by my NHS interactions which were less than optimal.

Its so so tough being strong when you are at a weak point

Hey ho… onwards and upwards eh ?

 

[Melgar]

Got to see the endo today

What a relief it was seeing someone who understood not only keto but carnivore way of eating

Equally relieved to be told that my self diagnosis of LADA was correct

He will be writing to my GP with the prescription


I know it will be a learning curve injecting but I’m prepared to learn and hopefully the general feeling of dis-ease and general illness will diminish

Thanks to all who responded to my call out for help !!

That's great you got the correct diagnosis @OrsonKartt .
May I ask when you started to question your T2 diagnosis? I have low normal C- Peptides , BMI around 19 , I exercise 3-4 hours a day. I'm having to exercise really hard to keep my figures in the prediabetic range . I drop my carbs and my weight drops off. I'm always producing low levels of ketones. Then I have spells of blood sugars going really low. I am on meds that increase insulin production though. It doesn't behave like T2 at all. If you don't mind me asking what were your HbA1c results like.

 

[OrsonKartt]

That's great you got the correct diagnosis @OrsonKartt .
May I ask when you started to question your T2 diagnosis? I have low normal C- Peptides , BMI around 19 , I exercise 3-4 hours a day. I'm having to exercise really hard to keep my figures in the prediabetic range . I drop my carbs and my weight drops off. I'm always producing low levels of ketones. Then I have spells of blood sugars going really low. I am on meds that increase insulin production though. It doesn't behave like T2 at all. If you don't mind me asking what were your HbA1c results like.

My hba1c for the last 10 years have all been pre diabetic levels. 42-48.

I have been strictly low carb then keto then carnivore in an attempt at keeping glucose levels “ normal”

I started to question myself a couple of years post diagnosis. I just wasn’t getting similar daily glucose levels on par with others following a similar strict regime.

I experimented with metformin which had no noticable affects on glucose levels also tried berberine. Again no noticable affects

Then came things like frozen shoulder , Vikings disease, repeated episodes of thrush and recently a numb foot and generally feeling unwell , brain fog and very recently a couple of falls.


Maybe 5/6 years ago I had low c-peptides from memory one point two. Currently zero point nine. Hba1c still in prediabetic levels

 

[Melgar]

Thanks @OrsonKartt . That was my brother's LADA journey, years at prediabetic levels then it started trending upwards. He was not on a low carb diet though. I did the very low carb diet for nine months, it had very little effect on my blood sugars. 10 years when first diagnosed type 2. It just goes to show how complicated adult onset T1 is.

 

[OrsonKartt]

Thanks @OrsonKartt . That was my brother's LADA journey, years at prediabetic levels then it started trending upwards. He was not on a low carb diet though. I did the very low carb diet for nine months, it had very little effect on my blood sugars. 10 years when first diagnosed type 2. It just goes to show how complicated adult onset T1 is.

I’ve done courses designed for health care professionals and read lots and lots around the subject .


The more I study the more I see that science itself is a process and not a series of be all and end all facts .

Trouble is of course we live in a system where answers which fit 90% of the population are taken as 100% truth

Hey ho. … onwards and hopefully upwards

Have a good day if you possibly can

 

[OrsonKartt]

I’ve done courses designed for health care professionals and read lots and lots around the subject .


The more I study the more I see that science itself is a process and not a series of be all and end all facts .

Trouble is of course we live in a system where answers which fit 90% of the population are taken as 100% truth

Hey ho. … onwards and hopefully upwards

Have a good day if you possibly can

Ps. Thanks for the replies and interactions. It makes me feel more human in a very digital time