Misdiagnosed type 1 possibly type 2

[CDF2368702]

Thank you for your reply
The only reasoning they said I could be type two is because of the cPeptite result (unsure of exact number) and the no antibodies.

They said it could be a positive as I would move off insulin.

At my last appointment they adjusted my bolus from 1-15G to 1-10G and since that my overall levels have been a lot lower/ I’ve probably had a few more hypos than usual as well.

I’ve always been a decent weight for my height/age
5ft11 and approx 87KG

Also currently on a pump/closed loop- omnipod 5

 

[helli]

I agree with the other comments on here.
I have no medical training but my I:C ratio is 1:15 and no one has suggested it is too low for someone with Type 1 after more than 20 years.
As others have suggested., it is still possible to produce some insulin for decades after diagnosis with Type 1.

My initial diagnosis was done without any GAD or c-Peptide tests. Even though I was in my 30s, the doctor was confident it was Type 1 because I had all the classic symptoms (including weight loss) and I was "too slim to have type 2!"

 

[harbottle]

It's possible. Type 2 diabetes has many 'subtypes', including one called 'Severe Insulin Deficient Diabetes' (SIDD). This is seen in younger people with low BMI:

What is Severe Insulin-Deficient Diabetes (SIDD)?

Severe insulin-deficient diabetes is a subtype of type 2 diabetes. Learn more about the nuances of this form of diabetes and the risks associated with SIDD.

www.verywellhealth.com

So it's possible that you may just not produce enough insulin to deal with the background glucose and post-meal levels.

 

[PattiEvans]

When I asked for tests to prove I was T1 and not T2 the Endo said it was pointless doing the GAD antibodies tests as I had been diagnosed for 8 years and they would all have gone.

 

[Inka]

When I asked for tests to prove I was T1 and not T2 the Endo said it was pointless doing the GAD antibodies tests as I had been diagnosed for 8 years and they would all have gone.

I had an antibodies test approx 25 years after diagnosis and I still had antibodies (two different types). I think it depends on the person, so, in some uncertain cases, it’s worth a try.

 

[Lucyr]

When I asked for tests to prove I was T1 and not T2 the Endo said it was pointless doing the GAD antibodies tests as I had been diagnosed for 8 years and they would all have gone.

I had antibodies after 15 years, only one of the two types tested though.

 

[Drummer]

A lifelong friend of my brother in law, best man at the wedding was misdiagnosed type 1 for decades.
He was constantly going hypo and he lost everything - HGV licence, job, house, family - struggled for decades until his consultant retired - early morning phone call from the new one told him to stop the insulin as he was not diabetic.
That was some years ago now - he came to see my brother in law, they talked all day, then he walked away and has not been seen since.

 

[CDF2368702]

I’ll report back following my appointment and will keep you all posted 🙂

 

[PattiEvans]

I had an antibodies test approx 25 years after diagnosis and I still had antibodies (two different types). I think it depends on the person, so, in some uncertain cases, it’s worth a try.

Who was I to contradict the Endo? But as you say, worth a try. As it happens I have no less than 4 other auto-immune conditions, so I don't think there's much doubt.

I’ll report back following my appointment and will keep you all posted 🙂

Please do, there seems to be so many different views even amongst those specialist health care professionals. I applied for some research and I was interviewed by the DSN over the phone today. She was saying that there are far more "types" than they have ever acknowledged.

@Drummer, that was rather sinister about the chap not being seen since.

 

[Drummer]

@PattiEvans They have been very concerned about him - they used to meet regularly, but the shock of the discovery must have been terrible. They do hope that he'll turn up one day.