I was Type 1 all along

[Lord Midas]

Hi everyone, been away for a while due to getting fixed up after a recurring spinal injury came back to haunt me!

Many on the forums said I should ask for my records to see what my numbers and diabetic history shows

When I joined the forums I said I went from a Type 2 to a Type 1. Most said this couldn't be true, as diabetes doesn't work like that. So, I went to the hospital doc (I see a new doc now) and asked her to explain why they said I'd become a Type 1.

Turns out that at the beginning my local doc said I had become a T2. I was put on metformin and gliclazide. Within a year these were no longer cutting it and I went onto supplementing the tablets with Humalog injections. It wasn't long after that I went off the tablets and went fully insulin dependent, adding basal Lantus.

I was then seeing a hospital specialist doctor. And through regular visits, he had made many notes. About 2 years ago I had a special test done. This tests the c-peptide protein amount and amount of anti-bodies. The results show I had almost 0 c-pep and a huge amount of anti-bodies.

My new docs said by looking through the notes the old doc had his suspicions that I was always a T1 and never a T2. This new test finally proved that I was indeed a Type 1 from the very beginning.

And thus my questions have been answered and I can confidently say I'm a Type 1 Diabetic. Which sucks, as I'll never be able to reverse it with a ketogenic diet. Though at least this will allow me to control my BS much much better.

 

[Ann1982]

I know the feeling! I suspect I may be type one as well as metformin etc did not work and I was on insulin very quickly. I have never had a c peptide test. I feel that my doctor took 1 look at me and said "overweight- type 2"!

 

[ickihun]

I've only been ever told I'm severely insulin resistant. Now I hear type1s can be insulin resistant too.
I'm sure I'm type2. Well I've told medics I am and never been refuted.
Consultant said he will restart me on low basal insulin only and continue metformin after bariatric surgery but that's normal for type2s after being diagnosed 14yrs+ but symptoms for 40yrs+ has me confused.
I really should ask for antibody test. C-peptide may show I've burnt out my cells by now, only.
I guess consultant can afford to request these tests when in hospital having major op. My insulin need is heavy at present and I don't feel comfortable asking for tests which I feel my consultant has enough knowledge on.
Seeing dn next week. I'll pick her brains, she's brilliant too.
I may ask consultant to check me officially if basal and metformin not enough on egg size food portions.
Luckily I'm doing op for weight loss mainly, whatever the end result.
@Lord Midas wow. You're a type2 expert with type1 experience.
Cumberland found the same.
I'm on the same insulin's as @Cumberland.

 

[Cumberland]

I was diagnosed Type 2 in my 20's and re-diagnosed Type 1 in my 50's
Never been overweight in my life and was quickly put into insulin after T2 diagnosis

The consultant said in my case I had initially been mis-diagnosed

I'm now in Toujeo and Novorapid

I guess mistakes can happen

Good luck @Lord Midas

And thanks @ickihun for the heads up

 

[Lord Midas]

Hey everyone. I guess from a doctor's point of view they only know what they were taught, and the likely/common occurrence in older folk is type 2. It's interesting many of us have had similar experiences.
@ickihun the c-pep test can be done with your usual hba1c test. It just needs to be added to the form.

 

[Lord Midas]

p.s by older folk I mean, er, you know, not 20 something's
I'm now 45 and am having my 11 year diabetic birthday (it was August 2006 when the symptoms hit big time)

 

[noblehead]

At least you've had some confirmation @Lord Midas , at 45 you've still got a long-life ahead of you still. Good luck.

 

[Lord Midas]

Oh yes, @noblehead. I'm getting in about 5 years. We're going to move to the country and I'm building a Japanese dojo building, to do my yoga and fitness. And building a Japanese garden to surround it.
A full life ahead!

 

[bulkbiker]

Oh yes, @noblehead. I'm getting in about 5 years. We're going to move to the country and I'm building a Japanese dojo building, to do my yoga and fitness. And building a Japanese garden to surround it.
A full life ahead!

Not wishing to derail your thread but do you know any good websites for Japanese garden design ideas? We would like one in our garden redesign.

 

[noblehead]

Oh yes, @noblehead. I'm getting in about 5 years. We're going to move to the country and I'm building a Japanese dojo building, to do my yoga and fitness. And building a Japanese garden to surround it.
A full life ahead!

I might join you

 

[Lord Midas]

Not wishing to derail your thread but do you know any good websites for Japanese garden design ideas? We would like one in our garden redesign.

No websites yet, but some books.

A Japanese Touch For Your Home
A Japanese Touch For Your Garden
The Complete Japanese Joinery
Japanese Homes And Their Surroundings

Fabulous books. They vary between wordy and picturey. But I'm making it up as I go as I've never done anything like it before. I'm a reasonably experienced gardener, but never done Japanese style, or build a building! Though I did assemble a prepacked cold frame once

 

[bulkbiker]

No websites yet, but some books.

A Japanese Touch For Your Home
A Japanese Touch For Your Garden
The Complete Japanese Joinery
Japanese Homes And Their Surroundings

Fabulous books. They vary between wordy and picturey. But I'm making it up as I go as I've never done anything like it before. I'm a reasonably experienced gardener, but never done Japanese style, or build a building! Though I did assemble a prepacked cold frame once

Many thanks for those will take a look..

 

[Deleted Account]

I have always assumed the test to determine t1 vs t2 was expensive to run which it seems to be so rare and diabetes type is so often guessed/assumed.
It was not run for me: I was "scientifically" diagnosed t1 in my mid-30s because I was slim and active. The diagnosis seems to be correct so I have no room for complaint.

However, it is frustrating that t2 is so often assumed because of age. Last year, I read an article (wish I could find it now) which said that more than half t1 were diagnosed over the age of 20. So much for it being Juvenile Diabetes. I wish we could bin that term: it's not as if children grow out of it.

 

[ickihun]

p.s by older folk I mean, er, you know, not 20 something's
I'm now 45 and am having my 11 year diabetic birthday (it was August 2006 when the symptoms hit big time)

Very similiar. Any symptoms in childhood or in times of illness?

 

[Daibell]

Many GPs or even DUK don't understand Late onset T1 and ignore it as it messes up the convenient typing i.e. born with T1 or overweight/older T2. They just guess T2 if you're in middle-age. There are a lot of us around.

 

[Lord Midas]

Very similiar. Any symptoms in childhood or in times of illness?

No, came on out of the blue. There was no reason to suspect it was going to happen.

 

[James1968]

I
@ickihun the c-pep test can be done with your usual hba1c test. It just needs to be added to the form.[/QUOTE]

I will need to ask about c-pep test at my review,probs 10 months since told t2 but meds increased to 2000mg met and 160 mg gliclazide and still can't get bs down below 10

 

[jillsymes66]

I developed T1 after a major illness and operation. Docs said it was down to body shock that caused such a drastic sudden onset.

Sent from my SM-T710 using Diabetes.co.uk Forum mobile app

 

[ickihun]

I
@ickihun the c-pep test can be done with your usual hba1c test. It just needs to be added to the form.

I will need to ask about c-pep test at my review,probs 10 months since told t2 but meds increased to 2000mg met and 160 mg gliclazide and still can't get bs down below 10

My burn out left me with 20s and metformin not working. Gliclazide and stagliptin neither. Hence insulin. Insulin took some months to settle my high bgs and not settled enough til seperate insulins. I did take my tablets but neglected my diet. Both are needed in such cases. I still swam and had long walks regularly too in hind sight.
Diet does play a huge part for type2s. Maybe that's where maintenance is different for both types. Type1 needs a balanced food to injected insulin. Where as Type2s need carbs to circulating insulin and excess stored glucose (mainly in the liver).
Do you agree @Lord Midas ?

 

[James1968]

My burn out left me with 20s and metformin not working. Gliclazide and stagliptin neither. Hence insulin. Insulin took some months to settle my high bgs and not settled enough til seperate insulins. I did take my tablets but neglected my diet. Both are needed in such cases. I still swam and had long walks regularly too in hind sight.
Diet does play a huge part for type2s. Maybe that's where maintenance is different for both types. Type1 needs a balanced food to injected insulin. Where as Type2s need carbs to circulating insulin and excess stored glucose (mainly in the liver).
Do you agree @Lord Midas ?

Yeah I think I am the same meds not working for me