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Misdiagnosed diabetes

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ljw260309

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I have recently been told that after 30 years of being treated as a type 1 diabetic I am now diagnosed as type 2. I feel upset by this as after 30 years of high dose insulin I should of been cared for differently. Maybe no insulin needed when diagnosed. Has anybody else had this diagnosis and I'd appreciate people's thoughts. Thanks in advance.
 
I had the exact opposite

10 years as type2 to find actually type 1


Trouble is not every case is the same…

My diagnosis was always being questioned due to age at diagnosis lack of gad antibodies…. But I was not everweight

There was probably something in your initial testing that was a strong signal that you were t1
 
ljw260309 said:
I have recently been told that after 30 years of being treated as a type 1 diabetic I am now diagnosed as type 2.
Click to expand...

So you are producing insulin? Cpeptide test shows this?

I've been T1 for 51 years and am slightly insulin resistant (T2 dad, T1 mum) but no one has ever suggested that I might be T2....

Yes, I agree that it is mind boggling (as @searley said a lot of T1s get an initial T2 diagnosis).

On the plus side, does this mean you can drop insulin if you go low carb? That would be awesome!
 
Was a similar thing for me

I was 35 so told t2 but put on insulin within 6 months but still told t2

I was not overweight but had no antibodies.. also never had keytones. But have a t1 father

Have you had a cpetide test?

If production of insulin is still ok you could work at coming off insulin

Diet along with introducing non insulin medication like metformin or bydureon may reduce/remove your insulin needs

This is the reason I eventually got tagged t1 as I said I’m stopping insulin how do we achieve that.. but a new cpeptide test showed I’m producing almost no insulin
 
We all know being re diagnosed as a type 1 from a type 2 is common but the other way round is mind boggling. After 30 years, how did they come to this conclusion, can you give us more details? I just can't imagine HOW they decided this was the case after so long, what have they said you should do now?, continue with the insulin or what? x
 
KK123 said:
We all know being re diagnosed as a type 1 from a type 2 is common but the other way round is mind boggling. After 30 years, how did they come to this conclusion, can you give us more details? I just can't imagine HOW they decided this was the case after so long, what have they said you should do now?, continue with the insulin or what? x
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Trouble is they have gone by age.. my consultant was a little like that

And once diagnosed no one ever really questions it…. It was only because I kept pushing that my case was looked at

You goto the gp he just looks at the screen and sees t1 or t2 and that’s it

In my case December I had appointment with my consultant she said your definitely t2.. February I had DVLA consultant I told him I may not see him again as stopping insulin and it was him who said no chance your type1

I took me going back to my consultant and name dropping to get new tests

So sometimes just new eyes looking at your case can help



Anyway good luck with your new diagnosis
 
searley said:
Trouble is they have gone by age.. my consultant was a little like that

And once diagnosed no one ever really questions it…. It was only because I kept pushing that my case was looked at

You goto the gp he just looks at the screen and sees t1 or t2 and that’s it

In my case December I had appointment with my consultant she said your definitely t2.. February I had DVLA consultant I told him I may not see him again as stopping insulin and it was him who said no chance your type1

I took me going back to my consultant and name dropping to get new tests

So sometimes just new eyes looking at your case can help



Anyway good luck with your new diagnosis
Click to expand...

Hi there, yes, you're right, they do. This way round though, being told 30 years ago you're type 1, being put on insulin for 30 years as a type 1 and THEN being told no, you're type 2 is very unusual. I hope the poster comes back to us, I'd love to hear their reasoning.
 
To be fair 30 years ago the tech and knowledge wasn’t there

Even in the last 10 years it’s change a fair bit

The diagnosis hba1c has dropped significantly too

So I can imagine the age biased back then…. But certainly should have been considered again in that time…. Especially if any other t2 indicators showed
 
It is very odd. So many of us are misdiagnosed as a T2 at first. It wasn't until I switched doctors that they ran the tests and diagnosed me right.

It is weird to me to take "high" doses of insulin and 30 years later for them to change the diagnosis. I am very curious too if a C-peptide and antibody tests were done. I am really wondering about this as a few T1's don't make antibodies but still don't make insulin and they don't know why. So no antibodies does not mean you aren't a T1. So then it would have to be a C-peptide test to know what is going on.

Either that or one doctor reading a chart wrong.....................That happened to someone where the doctor insisted they were a T2 and even wrote down T2 in the chart.............and the person had to get past records to prove otherwise. Also there was someone that once was told that they were a T2 because they didn't have antibodies even though they didn't make any insulin. It's a little nuts out there still sometimes.

I would also at this point want any new test redone as Labs have been known to mess up too.
 
Maybe I'm being naive, but the only way the diagnosis change would work is if @ljw260309 is still producing insulin, as after 30 years antibody tests would be useless. And a lot of T1s become slightly insulin resistant after a few decades of high external insulin and the recommended T1 highish carb diet.


But I like @Marie 2 's suggestion that it could also just be an uninformed consultant misreading the charts.

But I hope that the OP comes back soon and enlightens us. It would be awesome if she can eventually give up insulin...
 
searley said:
I had the exact opposite

10 years as type2 to find actually type 1


Trouble is not every case is the same…

My diagnosis was always being questioned due to age at diagnosis lack of gad antibodies…. But I was not everweight

There was probably something in your initial testing that was a strong signal that you were t1
Click to expand...
You are also different as they treated you as type 1 with insulin from the outset (within 6 months), even if you weren't correctly listed at your surgery. Rapid deterioration onto insulin supports type 1. I see someone posted the other day that they were now LADA because after 12 years as type 2 they need insulin, which would support type 2.
 
ljw260309 said:
I have recently been told that after 30 years of being treated as a type 1 diabetic I am now diagnosed as type 2. I feel upset by this as after 30 years of high dose insulin I should of been cared for differently. Maybe no insulin needed when diagnosed. Has anybody else had this diagnosis and I'd appreciate people's thoughts. Thanks in advance.
Click to expand...
If you rapidly needed insulin after diagnosis it also supports a type 1 diagnosis. You need to ask for a referral to a specialist.
 
ljw260309 said:
I have recently been told that after 30 years of being treated as a type 1 diabetic I am now diagnosed as type 2. I feel upset by this as after 30 years of high dose insulin I should of been cared for differently. Maybe no insulin needed when diagnosed. Has anybody else had this diagnosis and I'd appreciate people's thoughts. Thanks in advance.
Click to expand...

One interesting thing.
At the Diabetes UK conference two years ago there was a lot of excitement about the discovery of "guerrilla Beta cells". That is, Beta cells which had been masquerading as Alpha cells to avoid attack by the immune system and occasionally popping up again as Beta cells.
I have no idea what progress has been made since, but it might be possible that your Beta cells hadn't been entirely destroyed by your own immune system and the long time on insulin allowed them to slowly recover.

I know, also, that there was discussion on here a few years back about a strategy of putting T2s on insulin immediately after diagnosis to take the load off the pancreas whilst the underlying cause (insulin resistance I assume) was sorted out.

Another possibility, then, is that something in your body and/or diet has change enough to reduce or remove any insulin resistance so that now your pancreas can produce enough insulin to manage your BG. This could have happened at any time, including soon after diagnosis.
Once you are diagnosed as a T1 on insulin then usually that is you defined for life.
However if you have a functioning pancreas I am a little puzzled about how this was noticed now and not earlier.
I would have expected that your insulin requirements would have been fairly low which should have been a hint for further investigations.
Unless they have decided that you are a T2 with an under producing pancreas, so that a diet quite high in carbohydrates which is matched by injected insulin concealed the fact that you were still producing your own insulin.

More information, please! :)

Edit: "high dose insulin" suggests either very little self produced insulin, or a high degree of insulin resistance plus a high carbohydrate diet.
 
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