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T1 / T2 ?

K

Kevin.61

Member
Messages
9
Hi, i was diagnosed with T1 in 1991 and imediatly put on insulin and for 27 years and was treated for this. I have always been a strange case and sent to several different consultants and a proffesor in st Barts many yrs ago.

In 2018 I was told I have T2 not type 1 anymore
Has anyone else had this happen to them ?
 
Hello and welcome @Kevin.61 :)

When you say you have always been a strange case, what's the reasoning behind this and have you come off insulin now ?
 
Hi and welcome to the forum,

Can you tell us who told you this, and what lead to the decision? Did you have blood tests? What were they? Have they explained it to you?
 
Juicyj said:
Hello and welcome @Kevin.61 :)

When you say you have always been a strange case, what's the reasoning behind this and have you come off insulin now ?
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Sometimes I needed very little insulin and other times I needed quite a lot.
This is still the case now
Bluetit1802 said:
Hi and welcome to the forum,

Can you tell us who told you this, and what lead to the decision? Did you have blood tests? What were they? Have they explained it to you?
Click to expand...
Bluetit1802 said:
Hi and welcome to the forum,

Can you tell us who told you this, and what lead to the decision? Did you have blood tests? What were they? Have they explained it to you?
Click to expand...
Hi.
Yes a clinical pathologist had some bloods sent away I think it was called (gad tests) and he said this confirmed i was T2
 
Kevin.61 said:
Hi, i was diagnosed with T1 in 1991 and imediatly put on insulin and for 27 years and was treated for this. I have always been a strange case and sent to several different consultants and a proffesor in st Barts many yrs ago.

In 2018 I was told I have T2 not type 1 anymore
Has anyone else had this happen to them ?
Click to expand...

Hi @Kevin.61, oh my goodness, you were misdiagnosed as type 1 and on Insulin, that's awful. I'm afraid I don't know anything about 'changing type's' it is, as you say a strange case. But, I would want to know why, I was diagnosed type 1 and decades on Insulin, lots of questions to ask, with hopefully proper answers.
I wish you well and I hope you will get things sorted out properly.
 
Robinredbreast said:
Hi @Kevin.61, oh my goodness, you were misdiagnosed as type 1 and on Insulin, that's awful. I'm afraid I don't know anything about 'changing type's' it is, as you say a strange case. But, I would want to know why, I was diagnosed type 1 and decades on Insulin, lots of questions to ask, with hopefully proper answers.
I wish you well and I hope you will get things sorted out properly.
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Thank you. I have asked questions on why I was put straight on insulin without any tests and the answer I got back was that the doctors at that time probably thought I needed it!
 
Kevin.61 said:
Thank you. I have asked questions on why I was put straight on insulin without any tests and the answer I got back was that the doctors at that time probably thought I needed it!
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There are quite a few cases of misdiagnosis among members of this forum. Some are diagnosed T2 and turn out later to be T1, and some like you that were diagnosed T1 and turn out to be T2. It isn't unusual. Part of the reason is down to doctors stereotyping what a T2 looks like, or what a T1 looks like. T2's are always fat slobs. T1s are always youngsters. Of course, we know none of this is true, but it is surprising how many are put in boxes because of how they look, or how old they are, without doing the relevant blood tests. In 1991 you were young, and possibly nice and slim but with high blood sugars - therefore you were T1. No investigations done.

So what happens next for you?
 
Bluetit1802 said:
There are quite a few cases of misdiagnosis among members of this forum. Some are diagnosed T2 and turn out later to be T1, and some like you that were diagnosed T1 and turn out to be T2. It isn't unusual. Part of the reason is down to doctors stereotyping what a T2 looks like, or what a T1 looks like. T2's are always fat slobs. T1s are always youngsters. Of course, we know none of this is true, but it is surprising how many are put in boxes because of how they look, or how old they are, without doing the relevant blood tests. In 1991 you were young, and possibly nice and slim but with high blood sugars - therefore you were T1. No investigations done.

So what happens next for you?
Click to expand...
I was 30 years old in 1991. I was very fit but at the time I was rushed in to hospital I had ketoacidosis so well underweight
For the future I think I just continue on as I always have, I did ask the consultant who requested the gad test "was I misdiagnosed" and I could see him very defensive straight away
 
The man who was best man at my sister's wedding was told that he was not type one diabetic after decades of problems with insulin - he lost his licence to drive, his job, house, family, friends due to the violent hypos he experienced.
He came to see my brother in law a little while ago, poured his heart out, then walked out of their house and has not been heard from since.
He was diagnosed in the mid 1970s - got a new consultant and tests to try to find out why he was having so much trouble - frantic phone call telling him to stop all insulin 40 years later.
 
Resurgam said:
The man who was best man at my sister's wedding was told that he was not type one diabetic after decades of problems with insulin - he lost his licence to drive, his job, house, family, friends due to the violent hypos he experienced.
He came to see my brother in law a little while ago, poured his heart out, then walked out of their house and has not been heard from since.
He was diagnosed in the mid 1970s - got a new consultant and tests to try to find out why he was having so much trouble - frantic phone call telling him to stop all insulin 40 years later.
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One consultant i seen several years ago was so nasty saying I must be taking steroids as my blood sugars were so unpredictable and that I could never put my hand on my heart and say otherwise!!!
 
Kevin.61 said:
I was 30 years old in 1991. I was very fit but at the time I was rushed in to hospital I had ketoacidosis so well underweight
For the future I think I just continue on as I always have, I did ask the consultant who requested the gad test "was I misdiagnosed" and I could see him very defensive straight away
Click to expand...

The ketoacidosis is the clue. It is caused by very high blood sugars and has previously been thought of as a T1 problem only, and that T2s don't experience this. Well, they should tell that to the T2s on this forum that have experienced it.
 
Kevin.61 said:
I was 30 years old in 1991. I was very fit but at the time I was rushed in to hospital I had ketoacidosis so well underweight
For the future I think I just continue on as I always have, I did ask the consultant who requested the gad test "was I misdiagnosed" and I could see him very defensive straight away
Click to expand...

I was 31 when diagnosed in 1989,, I too was rushed to hospital, underweight, pear drop breath, at deaths door, but as for tests, I really don't know also hundreds of miles away from my home town.
 
Bluetit1802 said:
The ketoacidosis is the clue. It is caused by very high blood sugars and has previously been thought of as a T1 problem only, and that T2s don't experience this. Well, they should tell that to the T2s on this forum that have experienced it.
Click to expand...
My sugars were around 24 mmol at that time but it was several months after being diagnosed waiting to see the hospital consultant but things got so bad I was rushed in
 
Kevin.61 said:
My sugars were around 24 mmol at that time but it was several months after being diagnosed waiting to see the hospital consultant but things got so bad I was rushed in
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What has happened in the past is unfortunate, but it is what happens now that really matters.
What are your daily numbers like now, before and after food etc.?
What sort of food do you eat? Do you restrict your carbs at all?
 
Bluetit1802 said:
What has happened in the past is unfortunate, but it is what happens now that really matters.
What are your daily numbers like now, before and after food etc.?
What sort of food do you eat? Do you restrict your carbs at all?
Click to expand...
Sugars vary widely and unpredictable
Hba1c is 49.so overhaul control is ok,
I inject a lot to keep my sugars low.
Through the night my sugars rise , I have been told that my liver is pumping glucose out so at 7 am I inject around 14+ units (without eating food) of fast acting to try to slow down the rise in sugers. Then have more insulin with breakfast around 9.am
My diet is healthy but probably eat to much bread and butter as I am now overweight
 
Kevin.61 said:
My diet is healthy but probably eat to much bread and butter as I am now overweight
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There is healthy for the general public, and there is a different healthy for diabetics. As all carbs turn to sugar once digested, it makes good sense not to keep adding sugar to an already overloaded body. Therefore, keeping carbs to a minimum is wise. Bread, potatoes, rice, pasta, fruit, breakfast cereals, and so forth are the worst culprits. If you can cut these down or eliminate, you will need less insulin and have a good chance of losing weight. Bread and butter?? Cut the bread and increase the butter!!
 
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