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Miss diagnosed
- Thread starter Dogfish72
- Start Date
Resurgam
Master
- Messages
- 10,123
- Type of diabetes
- Treatment type
- Diet only
The best man at my sister's wedding, a very old friend of my brother in law was misdiagnosed as a type 1 many years ago. He lost everything - job house family and friends due to constant hypos. They used to meet regularly but there was always drama.
His consultant at the hospital retired and the new one called at some unearthly hour of the morning to tell him not to take and more insulin.
He came and spoke to my brother in law for a whole day, walked away in the evening and hasn't been heard from since. They still worry and wonder about him, poor lad.
His consultant at the hospital retired and the new one called at some unearthly hour of the morning to tell him not to take and more insulin.
He came and spoke to my brother in law for a whole day, walked away in the evening and hasn't been heard from since. They still worry and wonder about him, poor lad.
HSSS
Expert
@Dogfish72 welcome to the forum. That sounds like a mind blowing change of circumstances. Perhaps you could tell us more about the circumstances of both the original and updated diagnoses.
@Chris24Main was also misdiagnosed as first as type 1 although it wasn’t for as long as you. I would suspect he can empathise with your situation more than most of us. Many are misdiagnosed type 2 that later turn out to be type 1 but probably less common is the way it’s happened to you, not least because a type 1 diagnoses is far less common in the first place.
@Chris24Main was also misdiagnosed as first as type 1 although it wasn’t for as long as you. I would suspect he can empathise with your situation more than most of us. Many are misdiagnosed type 2 that later turn out to be type 1 but probably less common is the way it’s happened to you, not least because a type 1 diagnoses is far less common in the first place.
Chris24Main
Well-Known Member
- Messages
- 1,024
- Type of diabetes
- I reversed my Type 2
- Treatment type
- Diet only
@Dogfish72 - wow - 30 years. I thought I had it tough with 8 months.
For me, it was a little confusing, and I didn't really present classically as either 1 or 2 - and of course I knew nothing and really just did what I was told... the treatment settled in to deal with me in the sense of "cover the worst possible immediate case" - which was that my pancreas may have just packed up, so I was put on insulin.
Then, essentially anyone can be treated as if they are a type 1 diabetic, and it will look correct (the insulin injections leading directly to insulin resistance, which seems to justify the continuing treatment, and in my case, the increasing dosage) - the signs were all there if I'd known then what I know now.
Then, after 8 months of not getting the results of the antibody test (looking for the reaction to the autoimmune attack) a consultant who I really did not get on with but credit with saving my life - insisted on a C-Peptide test. Within a couple of weeks I was re-diagnosed as type 2.
I cannot imagine what it feels like to have been 30 years under the impression that you were type 1 - it's the total opposite; everything. I was just so angry I could barely sleep that first night, and I kind of vowed that I would do whatever it took to understand insulin resistance, and now that I could do something rather than just do what I was told (I don't now think that is true by the way, type 1s can do plenty for themselves, I was just a bit clueless).
It's a bit of a long read, but my journey is pretty much spelled out in real-time after that day in the NAFL or T2 thread -
www.diabetes.co.uk
I really cannot imagine what is going around your head after 30 years - try to give yourself time to adjust, but essentially your problem has gone from not enough insulin to too much... but - the big advantage you have is that as a Type 1 you really know how to control your insulin and the relationship between insulin and what you eat - you've had to to stay alive - that understanding puts you in an incredibly strong position to turn this new problem around.
And - for the first time in 30 years - this is no longer something you have to just accept!!
For me, it was a little confusing, and I didn't really present classically as either 1 or 2 - and of course I knew nothing and really just did what I was told... the treatment settled in to deal with me in the sense of "cover the worst possible immediate case" - which was that my pancreas may have just packed up, so I was put on insulin.
Then, essentially anyone can be treated as if they are a type 1 diabetic, and it will look correct (the insulin injections leading directly to insulin resistance, which seems to justify the continuing treatment, and in my case, the increasing dosage) - the signs were all there if I'd known then what I know now.
Then, after 8 months of not getting the results of the antibody test (looking for the reaction to the autoimmune attack) a consultant who I really did not get on with but credit with saving my life - insisted on a C-Peptide test. Within a couple of weeks I was re-diagnosed as type 2.
I cannot imagine what it feels like to have been 30 years under the impression that you were type 1 - it's the total opposite; everything. I was just so angry I could barely sleep that first night, and I kind of vowed that I would do whatever it took to understand insulin resistance, and now that I could do something rather than just do what I was told (I don't now think that is true by the way, type 1s can do plenty for themselves, I was just a bit clueless).
It's a bit of a long read, but my journey is pretty much spelled out in real-time after that day in the NAFL or T2 thread -
T2 or NAFLD? ...or, a funny thing happened on the way to the surgery
Hi, after posting an introduction, I was encouraged to start a thread - my story will be specific and probably not applicable to most on this forum, because I'm becoming increasingly convinced that my diagnosis is not correct. a reply from @JoKalsbeek has only helped cement in my mind that the...
www.diabetes.co.uk
I really cannot imagine what is going around your head after 30 years - try to give yourself time to adjust, but essentially your problem has gone from not enough insulin to too much... but - the big advantage you have is that as a Type 1 you really know how to control your insulin and the relationship between insulin and what you eat - you've had to to stay alive - that understanding puts you in an incredibly strong position to turn this new problem around.
And - for the first time in 30 years - this is no longer something you have to just accept!!
