Misdiagnosed

T

Tofino747

New Member
Relationship to Diabetes
Type 1
Following blood tests DSN advises that I am not T1 after living for 20plus years as a T1.
This has totally turned my world upside. Especially as I have spent the last few weeks learning how to adopt to living with an insulin pump.

Has anyone else received gone through a similar situation? I would be really grateful for any advice and guidance on where you got support/ advice on getting handle on things.
 
Tofino747 said:
Following blood tests DSN advises that I am not T1 after living for 20plus years as a T1.
This has totally turned my world upside. Especially as I have spent the last few weeks learning how to adopt to living with an insulin pump.

Has anyone else received gone through a similar situation? I would be really grateful for any advice and guidance on where you got support/ advice on getting handle on things.
Click to expand...
Welcome to the forum. It is usually the other way round people are diagnosed as Type 2 but are actually Type 1.
I would be asking what the results of the blood tests are that has suddenly led to that conclusion and what an on going treatment plan will be.
Some Type 2s are on an insulin regime but even then don't usually qualify for the technology that Type 1s do.
The DUK help line may be able to help you with what you need to discuss about future management.
 
The best man at my sister's wedding was diagnosed type 1 but got a phone call to say stop the insulin when his old consultant retired and a new one took over.
I can't tell you any more than he was really devastated as he'd lost so much due to the hypos he suffered - he looked to his friends for support at the time.
 
Hi and welcome.

I can well imagine you must be very unsettled by such a situation. Have you asked the DSN what evidence she has that you have been misdiagnosed? ie. What she has based her decision on or is it a consultant's decision and again you have the right to know the ins and outs of that decision AND what it will mean for you as a patient. ie. Have they suggested that you will lose the funding for your pump etc?

I think we had another member recently (in the last 3 months if I remember rightly) in a similar position although it is more common for it to be the other way around and people to be misdiagnosed as Type 2 when they are actually Type 1..... This of course is usually a welcome re-diagnosis as it opens doors to more technology and education. My concern would be that you lose the funding for your pump.

Can you tell us a bit about how your initial diagnosis came about? Did you develop DKA and land up in hospital or did it have a more gradual onset? Do you need particularly high doses of insulin?
Did you ever have a C-peptide or antibody tests and if so, do you have access to the results?
 
Also wondering if you could perhaps have developed some insulin resistance which is a sign of Type 2 and if so, then maybe you have also developed Type 2 on top of the Type 1 and have what is sometimes called "Double Diabetes". In that situation, Metformin is sometimes added to the treatment plan to help with reducing insulin resistance and make the insulin you use more effective. Usually there would be some weight gain for this to happen, so if you are carrying a lot of excess weight that might explain it, particularly if you are needing increasingly high insulin doses..
 
Tofino747 said:
Following blood tests DSN advises that I am not T1 after living for 20plus years as a T1.
This has totally turned my world upside. Especially as I have spent the last few weeks learning how to adopt to living with an insulin pump.

Has anyone else received gone through a similar situation? I would be really grateful for any advice and guidance on where you got support/ advice on getting handle on things.
Click to expand...

Welcome @Tofino747 🙂 What led them to the conclusion you’re not Type 1? Did you have blood tests? If so, which ones? Are they saying you’re Type 2 then, or are they saying you have MODY, a genetic type of diabetes? Has your medication been changed?
 
That is as others have said a more unusual way round. It is a lot more common for people with T1 to be misdiagnosed as T2.

I am another vote for going back to the DSN to ask what evidence they have of this change in diagnosis. Can you remember back to how the original T1 diagnosis came about. As this was around 20 years ago there would have been the antibody test available. After all the beta cells have been destroyed the antibody test would no longer register these, but a c-peptide test would show how much insulin, if any, is being produced by the pancreas.
 
SB2015 said:
After all the beta cells have been destroyed the antibody test would no longer register these
Click to expand...

Quite! Antibody negative doesn’t mean not T1. Certainly not after 20 years.

Do let us know what you find out @Tofino747 - and what type of diabetes they are now suggesting.
 
Inka said:
Welcome @Tofino747 🙂 What led them to the conclusion you’re not Type 1? Did you have blood tests? If so, which ones? Are they saying you’re Type 2 then, or are they saying you have MODY, a genetic type of diabetes? Has your medication been changed?
Click to expand...
Test for antibodies showed as negative and C-Peptide high. Conclusion that I am T2.
I have quarterly review with consultant in mid September. Everything on hold till then.
Just trying to get some thought together to discuss situation.
 
Tofino747 said:
Test for antibodies showed as negative and C-Peptide high. Conclusion that I am T2.
I have quarterly review with consultant in mid September. Everything on hold till then.
Just trying to get some thought together to discuss situation.
Click to expand...
Puzzling you were diagnosed as T1 in the first place. What led to that?
 
I think it might be useful to know the actual result in numbers of the C-peptide test and what sort of test was done ie blood or urine and was it a fasted test or a carb loaded test.
If the C-peptide test is genuinely high after 20 years then it certainly would make Type 1 unlikely, but there were long standing Type 1s with 40 and 50 years with diabetes who were tested in the USA and still produced some insulin after all that time but not large amounts, so what they are classing and a high C-peptide may be relevant.
 
rebrascora said:
Hi and welcome.

I can well imagine you must be very unsettled by such a situation. Have you asked the DSN what evidence she has that you have been misdiagnosed? ie. What she has based her decision on or is it a consultant's decision and again you have the right to know the ins and outs of that decision AND what it will mean for you as a patient. ie. Have they suggested that you will lose the funding for your pump etc?

I think we had another member recently (in the last 3 months if I remember rightly) in a similar position although it is more common for it to be the other way around and people to be misdiagnosed as Type 2 when they are actually Type 1..... This of course is usually a welcome re-diagnosis as it opens doors to more technology and education. My concern would be that you lose the funding for your pump.

Can you tell us a bit about how your initial diagnosis came about? Did you develop DKA and land up in hospital or did it have a more gradual onset? Do you need particularly high doses of insulin?
Did you ever have a C-peptide or antibody tests and if so, do you have access to the results?
Click to expand...
 
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