Misdiagnosis

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Leicester lad

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Type 2
Hi
I was treated as a type 1 diabetic for over 30 years since the age of 21 years.
After having the c-peptide test I have now been reclassified as type 2 as the result showed that my pancreas was indeed working and producing ‘shed loads’ of insulin.
I’d be interested to learn if this has happened to anybody else on this forum?
 
Welcome @Leicester lad 🙂 Wow! That’s a long time to be misdiagnosed! Has your treatment/medication changed at all in response to your re-diagnosis?
 
Hi and welcome.

I am wondering if you are perhaps MODY rather than Type 1 or Type 2. I don't know a lot about MODY but I believe it is hereditary. I think you should ask about testing for MODY. Unfortunately it is expensive and doctors may be resistant to do it but I think you should have a right to a correct diagnosis, especially if you have been misdiagnosed for such a long time..... doesn't seem fair to potentially give you another misdiagnosis.

Can you tell us a bit about how your original diabetes diagnosis came about? Was there a sudden onset and did you have DKA or was it just picked up in a routine blood test, perhaps for something else? Have you needed much insulin over the years and did that vary much? Just wondering what sort of daily dose you were taking if your own body is producing plenty of insulin itself? Were you having hypos often? Sorry to ask so many questions but this ties in with a discussion on another thread although that discussion is a bit confusing partly I think because English is not the first language of one of the participants and their treatment is in another European county where protocols may be different. I will attach a link to that thread as I believe that person may be MODY too but was originally diagnosed as Type 1.

forum.diabetes.org.uk

What TIR is considered Good

Moderator note: This thread developed from an earlier thread, and was split away to avoid derailing the original conversation
forum.diabetes.org.uk forum.diabetes.org.uk
 
Hi
briefly, in 1990 went to see gp as I was drinking pop a lot and felt thirsty. Had elevated sugar levels in urine. Sent to hospital.
Hospital consultant wasn’t sure but said to put me on insulin. Diagnosis of type 1.
Over the 30 odd years had numerous hypos.
At one point I stopped all diabetic medications including insulin for 5 months and survived. My consultant sanctioned this but only for 3 months. However I went on longer than this without medication - 5 months.
I kept querying my consultants as to whether or not I was type 1 but no test was offered to me until last year when it was found out that I was not type 1 but type 2.
 
rebrascora said:
Hi and welcome.

I am wondering if you are perhaps MODY rather than Type 1 or Type 2. I don't know a lot about MODY but I believe it is hereditary. I think you should ask about testing for MODY. Unfortunately it is expensive and doctors may be resistant to do it but I think you should have a right to a correct diagnosis, especially if you have been misdiagnosed for such a long time..... doesn't seem fair to potentially give you another misdiagnosis.

Can you tell us a bit about how your original diabetes diagnosis came about? Was there a sudden onset and did you have DKA or was it just picked up in a routine blood test, perhaps for something else? Have you needed much insulin over the years and did that vary much? Just wondering what sort of daily dose you were taking if your own body is producing plenty of insulin itself? Were you having hypos often? Sorry to ask so many questions but this ties in with a discussion on another thread although that discussion is a bit confusing partly I think because English is not the first language of one of the participants and their treatment is in another European county where protocols may be different. I will attach a link to that thread as I believe that person may be MODY too but was originally diagnosed as Type 1.

forum.diabetes.org.uk

What TIR is considered Good

Moderator note: This thread developed from an earlier thread, and was split away to avoid derailing the original conversation
forum.diabetes.org.uk forum.diabetes.org.uk
Click to expand...
 
How are you managing just on Metformin. Hope you aren't suffering with side effects. 🙄
What are your BG levels like? Are you still testing as I think that would be sensible at least in the short term. Have you modified your diet as that is am important part of managing Type 2 diabetes?
It sounds like you have had a question in your own mind about your diagnosis for quite a lot of years. Do you mind me asking....Were you overweight at all at diagnosis? Being Type 2 at such a young age would be even more unusual if you were slim.
Do you have a parent that has diabetes?
 
Hi
briefly, in 1990 went to see gp as I was drinking pop a lot and felt thirsty. Had elevated sugar levels in urine. Sent to hospital.
Hospital consultant wasn’t sure but said to put me on insulin. Diagnosis of type 1.
Over the 30 odd years had numerous hypos.
At one point I stopped all diabetic medications including insulin for 5 months and survived. My consultant sanctioned this but only for 3 months. However I went on longer than this without medication - 5 months.
I kept querying my consultants as to whether or not I was type 1 but no test was offered to me until last year when it was found out that I was not type 1 but type 2.
MODI was discounted by consultant because no history of diabetes in family apart from a very aged aunt and father with type 2
 
rebrascora said:
How are you managing just on Metformin. Hope you aren't suffering with side effects. 🙄
What are your BG levels like? Are you still testing as I think that would be sensible at least in the short term. Have you modified your diet as that is am important part of managing Type 2 diabetes?
It sounds like you have had a question in your own mind about your diagnosis for quite a lot of years. Do you mind me asking....Were you overweight at all at diagnosis? Being Type 2 at such a young age would be even more unusual if you were slim.
Do you have a parent that has diabetes?
Click to expand...
My BG levels fluctuate. I think I’ve been on every type of insulin imaginable over the years. I was seeing my consultant 3 or 4 times a year. I think I could even be a diabetic consultant myself given the knowledge I’ve learnt about diabetes When first diagnosed in 1990 my weight was 14.5 stones. Over the years it crept up to 24 stone. Since stopping the insulin I’ve lost 8 stone.
My aged aunt developed type 2 late life. My father developed type 2 at the age of 70
 
Leicester lad said:
Hi
I was treated as a type 1 diabetic for over 30 years since the age of 21 years.
After having the c-peptide test I have now been reclassified as type 2 as the result showed that my pancreas was indeed working and producing ‘shed loads’ of insulin.
I’d be interested to learn if this has happened to anybody else on this forum?
Click to expand...
Wow. Not sure what else to add
 
No one knows what happened to him, but the man who was best man at my sister's wedding was misdiagnosed as type 1 and suffered hypos for decades. He lost his job, home, family - he got a phone call from the new consultant at the hospital telling him to stop the insulin at once. He visited my brother in law, spent the whole day talking and then walked away.....
 
Leicester lad said:
At one point I stopped all diabetic medications including insulin for 5 months and survived. My consultant sanctioned this but only for 3 months. However I went on longer than this without medication - 5 months.
Click to expand...
That would seem like a significant clue. Odd that they didn't follow it up earlier.
Leicester lad said:
I kept querying my consultants as to whether or not I was type 1 but no test was offered to me until last year when it was found out that I was not type 1 but type 2.
Click to expand...
 
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