Has anyone known of, or experienced, being diagnosed Type 1, only to be told that they are actually Type 2?

[Pixie dust]

Hello,

It's as the title says; I'm looking to find people or examples of someone being diagnosed Type 1 and then being told that it's wrong and that you're actually Type 2.

I've never come across this before, and I cannot find any information about this happening before; however in 2019 I was diagnosed whilst in a coma, with sepsis, as Type 1; after a number of tests this is what the outcome was. Last year I tried to get the pump and jumped through all the hoops the local NHS trust told me to - to be told by the same consultant who helped diagnose me in the first place - that originally the correct tests were not done and that I'm actually type 2. This was also after me continuously telling them that something wasn't quiet right. I've since been on two different medications, in the last 7 months, plus long acting insulin daily to attempt to control my blood glucose levels and my Hb1ac has gone from 55 to 63 by blood tests; the last one being a few months ago, to now an estimation of 78, according to the Libre app. I live in the mid-high teens (13 -19 mostly) and I'm fed up.

It doesn't seem to make much difference with changes to my diet and exercise either unfortunately; although one tablet helped me lose about half of what I originally gained. I'm not entirely sure that's a good thing at this point though.

I have an appointment coming up with the same consultant at the end of the month and I'd like to be able to go armed with a bit more information so that I can fire some questions and try and get some answers that are useful.

Long shot, but can anyone give any insight.

 

[Resurgam]

The best man at my sister's wedding was told he was type 1 and put on insulin - struggled for a very long time with hypos, lost his HGV licence, his job, his house, wife and family. Then the consultant at the hospital he attended retired and he got an urgent phone call telling him to stop using insulin in the 20 teens.
I think he must have been using insulin from the 1970s.
He came to see my brother in law in a right state - spent hours talking and then walked away into the night never to be seen or heard from again.

 

[Lamont D]

I was diagnosed prediabetic in 2001.
I was diagnosed with T2 in 2009.
I was found to be non diabetic and had a diagnosis of hypoglycaemia after a few hospital tests.
In the scheme of things it is unsurprising that this happened, though every GP and one consultant before a true diagnosis didn't have a clue, what was happening to me.
I was lucky enough to find the specialist endocrinologist who saved my life!

It is not unusual or uncommon to get GP diagnosis totally wrong because of the lack of proper diagnostic tests, as there controlled by budgets and mainly through, their lack of understanding of the various different types of conditions under the diabetes/endocrine umbrella.
And more types, causes, symptoms, treatment within the various types.
There is more types than just T1 and T2!

I would ask for more diagnostic tests. Because you didn't say how your doctor came up with a T2 diagnosis.!

 

[Lainie71]

The best man at my sister's wedding was told he was type 1 and put on insulin - struggled for a very long time with hypos, lost his HGV licence, his job, his house, wife and family. Then the consultant at the hospital he attended retired and he got an urgent phone call telling him to stop using insulin in the 20 teens.
I think he must have been using insulin from the 1970s.
He came to see my brother in law in a right state - spent hours talking and then walked away into the night never to be seen or heard from again.

That's so so sad. He must have been desperate and exhausted all the avenues. Had nothing to live for after losing everything. That's so sad

 

[JAT1]

The best man at my sister's wedding was told he was type 1 and put on insulin - struggled for a very long time with hypos, lost his HGV licence, his job, his house, wife and family. Then the consultant at the hospital he attended retired and he got an urgent phone call telling him to stop using insulin in the 20 teens.
I think he must have been using insulin from the 1970s.
He came to see my brother in law in a right state - spent hours talking and then walked away into the night never to be seen or heard from again.

Tragic. Horrible - a wrong diagnosis of any kind can ruin someone's life.

 

[JAT1]

Hello,

It's as the title says; I'm looking to find people or examples of someone being diagnosed Type 1 and then being told that it's wrong and that you're actually Type 2.

I've never come across this before, and I cannot find any information about this happening before; however in 2019 I was diagnosed whilst in a coma, with sepsis, as Type 1; after a number of tests this is what the outcome was. Last year I tried to get the pump and jumped through all the hoops the local NHS trust told me to - to be told by the same consultant who helped diagnose me in the first place - that originally the correct tests were not done and that I'm actually type 2. This was also after me continuously telling them that something wasn't quiet right. I've since been on two different medications, in the last 7 months, plus long acting insulin daily to attempt to control my blood glucose levels and my Hb1ac has gone from 55 to 63 by blood tests; the last one being a few months ago, to now an estimation of 78, according to the Libre app. I live in the mid-high teens (13 -19 mostly) and I'm fed up.

It doesn't seem to make much difference with changes to my diet and exercise either unfortunately; although one tablet helped me lose about half of what I originally gained. I'm not entirely sure that's a good thing at this point though.

I have an appointment coming up with the same consultant at the end of the month and I'd like to be able to go armed with a bit more information so that I can fire some questions and try and get some answers that are useful.

Long shot, but can anyone give any insight.

Would be hard to have faith in the consultant who misdiagnosed. He could be still wrong. After your upcoming appointment, it may be useful to get another consultant to diagnose. Then you can compare.

 

[lovinglife]

I was diagnosed T1 when admitted to hospital as an emergency for something else, I was in 7 days and left with insulin and a T1 diagnosis. It was changed 2 weeks later to T2 after GP ordered C peptide tests etc because I was having multiple hypos a day because once I got home I started a low carb diet, apparently they hadn’t been done in hospital as my BG was reading as HI and I had high ketones they assumed it was T1. Immediately came of insulin and was put on Gliclizide max dose and metformin, I dropped the Gliclizide in stages with support from my GP as I lost weight and dropped my carbs even lower

 

[EllieM]

They did a study in Scotland where all their established (at least 3 years) T1s who visited outpatients were given a c peptide test.
8% were reclassified as other types,mostly as T2 (5%) and some as MODY. 1.5% were able to come off insulin.

Impact of routine clinic measurement of serum C-peptide in people with a clinician-diagnosis of type 1 diabetes - PubMed

Serum C-peptide testing can easily be incorporated into an out-patient clinic setting and could be a cost-effective intervention. C-peptide testing should be strongly considered in individuals with a clinician-diagnosis of type 1 diabetes of at least 3 years duration.

pubmed.ncbi.nlm.nih.gov

As a result, all T1s in SCotland now get a c peptide test after 3 years.

 

[Pixie dust]

The best man at my sister's wedding was told he was type 1 and put on insulin - struggled for a very long time with hypos, lost his HGV licence, his job, his house, wife and family. Then the consultant at the hospital he attended retired and he got an urgent phone call telling him to stop using insulin in the 20 teens.
I think he must have been using insulin from the 1970s.
He came to see my brother in law in a right state - spent hours talking and then walked away into the night never to be seen or heard from again.

This is so sad! I know things can easily be missed but that's such a long time to be dealing with the stress of being diagnosed incorrectly with such a huge impact on his life.

 

[Antje77]

I have an appointment coming up with the same consultant at the end of the month and I'd like to be able to go armed with a bit more information so that I can fire some questions and try and get some answers that are useful.

Do you have access to your test results to see what tests were actually done?
I would want to know which results made the consultant so sure you are a T2.
Is this consultant an endocrinologist?

 

[Pixie dust]

I was diagnosed prediabetic in 2001.
I was diagnosed with T2 in 2009.
I was found to be non diabetic and had a diagnosis of hypoglycaemia after a few hospital tests.
In the scheme of things it is unsurprising that this happened, though every GP and one consultant before a true diagnosis didn't have a clue, what was happening to me.
I was lucky enough to find the specialist endocrinologist who saved my life!

It is not unusual or uncommon to get GP diagnosis totally wrong because of the lack of proper diagnostic tests, as there controlled by budgets and mainly through, their lack of understanding of the various different types of conditions under the diabetes/endocrine umbrella.
And more types, causes, symptoms, treatment within the various types.
There is more types than just T1 and T2!

I would ask for more diagnostic tests. Because you didn't say how your doctor came up with a T2 diagnosis.!

I'll definitely be asking for more tests. He'd done a c peptide test last year as far as I'm aware.

Do you have access to your test results to see what tests were actually done?
I would want to know which results made the consultant so sure you are a T2.
Is this consultant an endocrinologist?

I haven't been given them.
I know there were other tests meant to have been done but again never got the names/results.
I plan on asking about them when I see him.
He is meant to be one of the better endos in the area unfortunately but lack of communication and the correct care/treatment makes me question so much of what's been said.