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For type 1

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Spireite72

Spireite72

Well-Known Member
Relationship to Diabetes
Type 2
Thanks Wayne, that’s really interesting. Slightly frustrating that it suggests people with T1 can come off insulin, when actually it means ‘people misdiagnosed as having T1 who actually have something else’ 🙄

I saw a presentation earlier this year that said the recent research about their now being FIVE different types of diabetes was a bit misleading, as there are already more than 70 different variants that have been observed!

Just a bit frustrating that some of those trying to diagnose only have two boxes on their mental tick-box list. And those are often only divided by age and/or weight. o_O
 
Thanks Wayne - over the years I have read some many articles like this and my typical response in the early days was WOW - wonderful nowadays it is em... (putting it mildly). I had the same response to the article you talk about Mike.

As someone who has been through the Cpep and beta cell testing and told that I was misdiagnosed as T1 all those years ago and was a MODY then a 1.5 I have now been told if I am ever admitted to hospital to say I am an insulin dependent T1 diabetic (bluntly they don't know!)

I was put on two drugs 15 years ago and my docs wanted to trial me on Diamicron but after much consideration I declined as for me my body had become so used to the insulin it would be a major upset to my system to undertake this - never minding the fact that I had a new baby to consider! I have been involved in numerous trials for diabetes and partaking in one at the moment so don't get me wrong I am a great believer in all the research and all advances in diabetes are wonderful and long may it last but I do think there are some out there who are involved in this research for the wrong reasons and giving false hope to impressionable people. 😡

For me all these labels are worthless - I have T1D and it will form part of my life until that expires and while frustrating and annoying at times its not the worst condition in the world and I can live with it - well most of the time😉
 
I thought this test was a lot more common that is being suggested.....its certainly not new.....

a better way to diagnose for sure.....
 
I finally had a c-peptide test last year after over 30 years of Type 1 when going for the pump. The consultant apologised and said it was a CCG requirement in our area. Presumably this is to sift out the fakes. Anyway got my result and it was c-peptide not detectable.
 
I have never had this test as far as I know.
 
The c-peptide can be useful. When GP refused to accept I was T1 (LADA), refused me insulin and said I was T2 despite all the LADA symptoms etc I had a c-peptide and GAD done privately. The former was right at the bottom of the normal range (the GAD was negative). This confirmed my own thoughts which was confirmed when the same GP said I had to go on insulin 1 year later. I've also since learned that the GAD test can be very unreliable and viruses can cause T1 as well as anti-bodies. The NHS can be very poor at diagnosis so always do your own homework.
 
I had this test a few years ago and the result was none detectable.. whatever that meant lol! What is it they are looking for... Beta cells or something? Pretty sure whatever it means i'm still stuck on insulin for life lol. Good to avoid misdiagnosis though i suppose.
 
CosmicHedgehog said:
I had this test a few years ago and the result was none detectable.. whatever that meant lol! What is it they are looking for... Beta cells or something? Pretty sure whatever it means i'm still stuck on insulin for life lol. Good to avoid misdiagnosis though i suppose.
Click to expand...

The test they are talking about here is cPeptide, which is produced alongside insulin by the pancreas. If little or no cPeptide is measurable then the person isn't producing much if any insulin.
 
trophywench said:
.... which I would immediately have interpreted as

£6 each is far too much money to waste on that number of people!
Click to expand...

Just seen a tweet by Prof Andrew Hattersley - apparently the Edinburgh clinic that decided to randomly check 3000 patients for c-Pep found that 5-10% needed to be reclassified. Yikes!
 
For what it's worth - the c-peptide test is checking whether your body is still making insulin.

Insulin your boy creates, is first generated as a single long protein - preinsulin.
This is folded over an joined back onto itself - and a portion is excised - the C-Peptide,
leaving the A and B chains ot the working insulin,

Synthetic insullin has alreadly dropped the c-peptide porttion during manufacture.

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https://en.wikipedia.org/wiki/C-peptide
https://www.diabetes.co.uk/c-peptide-test.html
 
Whilst at the moment Cpep is a useful indicator of beta cell function and assists in diagnosis and treatment it again is being developed all the time and at the moment from what I have read (cannot for the life of me remember where but was in the last 12 months - just read Benny's comments and the article he refers to is one of the ones I read https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5446389/) they are hoping further developments with the testing of it will be used to predict likely time until a person requires insulin and also to provide guidance for discontinuance of therapy... As I have said I wholeheartedly welcome and have always (well nearly!) partook in research when asked but sometimes I just wonder why all of a sudden this research hits the headlines. This research and all other beta cell research has been going on for years... Sorry for the scepticism - should be more positive its Friday and the sun is predicted to shine all day over the west tomorrow🙂
 
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My best friend told me last week someone with type 1 she knows had been cured. When I was likely I highly doubt they are type 1, because its not possible, she got a little defensive. I had to explain that there are so many different types that get put into the main 3 boxes, that its more likely this person had a different type and thats why shes now 'cured'.
 
An awful lot of long term (well up to 70 years or so!) T1s still actually have some insulin production - not enough to be of much use, but nevertheless, still some. I very often wonder whether that's why some of us seem to escape any serious complications for so long? and might also give a clue why some very short-standing ones, do.

I've also wondered whether the original use of animal insulins to us old uns still had the C-pep in it and offered protection, so the two go together really.
 
Jenny - glad someone else thinks along the lines I do!! I have brought this up with docs but the newer generation medics don't seem to want to hear/listen to this and just look at me as if I am mad so I just zip it now and do my best - most of the time!)🙂 I have a relation who worked in Yale in the 70s-90s and he would have been a great source of the wild and wonderful ideas and thoughts (some not unfounded I hasten to add!) that I have about diabetes...
 
My old consultant was always threatening to do a c-peptide test for me, never happened unfortunately. As some may already know, I was originally on 20 units of lantus and 45 units of novorapid at diagnosis. After about 18 months I had to start reducing the lantus as I was waking in the low 4s (I also reduced novorapid, but not to the same degree). Eventually, 4 years after diagnosis, I was down to 2 units of lantus and still waking in the 4s so I decided to see what would happen with no lantus. Levels were up to 5-ish on waking, but for the past 6 years I have not needed any basal insulin, so clearly my pancreas recovered to some extent and is still producing some insulin. I still need novorapid with food/carbs, but this is down to about 20 units a day. I have encountered half a dozen others over the years on the forum who have had similar experiences 🙂
 
Alan - your body was just temporarily overwhelmed by the pressure the chest infection put on it - well you wouldn't have made it as far as A&E had you not been so otherwise fantastically fit, would you? You'd have been recorded on your death certificate as one of those youthful fit people who just have a heart attack and die suddenly for no reason, I reckon!

Meanwhile in the fullness of time your poor ole pancreas recovered to the extent it can currently still keep you alive until you bombard it with food LOL - so hence a very 'decent' amount of your own insulin production still possible at the moment. remains to be seen whether many more Beta cells pop their clogs, or what, doesn't it? You are an interesting case study as far as I'm concerned ! LOL
 
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