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Misdiagnosis

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bohemianbri

Member
Messages
7
diagnosed Type1 14 years ago aged 58. following antibody test and c-peptide test now diagnosed as Type2!!! How can this be? Anyone with similar experience?
 
Hi @bohemianbri , a misdiagnosis is more common than it should be. It’s usually misdiagnosed T2s who are subsequently found to be T1’s due to the early ‘late onset‘ diabetic symptoms being very similar to T2.

That said there are members here who have been misdiagnosed as T1 and are in fact T2.

I’m going to tag @Chris24Main who was misdiagnosed T1.
 
Hi @bohemianbri,

Sorry I can’t help with your question but that must be hard to get your head around! What was it that triggered the tests after so many years? Did they not test you at diagnosis?

Was about to tag @Chris24Main fir you but I see @Melgar has just beat me to it :)
 
Thanks @Antje77 I think it's this one

On phone while on holiday so make no promises.
Basically a scottish study did cpeptide tests on all their long term ( more than 3 years) t1s and found that a small but significant number were either t2 or mody.
A very small number of people came off insulin.

Finding it hard to believe antibodies have any relevance after 14 years but cpeptide is very relevant.
 
16 years ago I had been losing weight without trying and was drinking, fizzy pop and squash, for England. I saw my GP on a Friday who diagnosed type2. and gave me a prescription. As I was leaving I mentioned my father had been diagnosed with late onset type1. Before I got to the pharmacy he called to tell me not to get my prescription but to go to the hospital for further tests. I was tested and diagnosed type1. As it was a Friday I was there until the Monday. Helped some medical students with their questions on the Monday morning before being signed off by the consultant.

Recently my insulin injections have been less effective and I'm up to 50 units of Novomix30 twice a day; when I started it was 20 + 10. I saw my GP thinking a regime change might be necessary. He referred me to a consultant. The consultant said that weight gain and other pointers would lead to a diagnosis of type2 and asked me to have some blood tests. Results "He has negative pancreatic antibodies and C-Peptide shows good endogenous insulin production as C-Peptide was 0.69 nmol/L" "These results show he has Type2 diabetes not Type1 despite diagnosis in 2008."

I have a follow up appointment with my consultant in August. I don't think I will be taken off insulin ... but who knows. Maybe I will be able to have the weight loss drugs that are not available to Type1.
 
The best man at my sister's wedding was diagnosed as type 1 and stuck to the advice he was given - for decades he was always going hypo, lost his job as a HGV driver, the house, family - almost lost his mind.
When his consultant retired he got an early morning phone call from the new one telling him to stop the insulin.
He visited my brother in law in his man cave - the garage under the house, talked to him all afternoon, then left and has not been heard of since.
 
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