Type 1 Wrongly diagnosed for the last 10 years

[richieworld]

Hi Guys,

So I’ve been type1 for the last 10 years. This week after blood test results i was called in to see the consultant. He has now said I am type 2 and had put me on Metformin as well as Insulin. This means I will lose my Libre sensors which have helped me so much over the past 8 months.

Has anyone else heard of this diagnosis before please?
I am so confused.

Rich

 

[Angela64]

Unbelievable

 

[HSSS]

Hi Guys,

So I’ve been type1 for the last 10 years. This week after blood test results i was called in to see the consultant. He has now said I am type 2 and had put me on Metformin as well as Insulin. This means I will lose my Libre sensors which have helped me so much over the past 8 months.

Has anyone else heard of this diagnosis before please?
I am so confused.

Rich

Do you know why the change of mind? He should have explained it and if not I’d be back in touch asking for that explanation.
On the plus side if that is correct you are type 2 there’s a chance you may not need insulin if you have decent self production and are willing to make dietary changes?

Also ng28 1.6.17 now allows for type 2 to have sensors in some circumstances so you may not lose them. https://www.nice.org.uk/guidance/ng28/chapter/Recommendations#blood-glucose-management

 

[In Response]

My understanding is that the latest NICE guidelines for Libre refers to everyone being treated with insulin regardless of type of diabetes. At least that is the case in England.
There is no reason why people with type 2 should be treated as second class citizens.

It is possible to be Type 1 with insulin resistance. I know of a few people with Type 1 who take Metformin.

 

[richieworld]

My pancreas is still producing Insulin apparently. I did ask how this diagnosis has now changed and he just said that they know a lot more about diabetes now than they did 10 years ago. I’m not angry in anyway, actually quite excited at the thought of possibly coming off of insulin sometime in the future.

 

[HSSS]

My pancreas is still producing Insulin apparently. I did ask how this diagnosis has now changed and he just said that they know a lot more about diabetes now than they did 10 years ago. I’m not angry in anyway, actually quite excited at the thought of possibly coming off of insulin sometime in the future.

That’s good that you see the positives.

In the past sadly some drs considered being on insulin enough to classify you as type 1, or a dka (much more common in type 1 than 2 but still possible in type 2) or even if you weren’t achieving control the way they expected you to as a type 2. He’s hardly going to call out another dr for misdignosing you. Were you always called type 1 or was there some confusion originally “

 

[HSSS]

My understanding is that the latest NICE guidelines for Libre refers to everyone being treated with insulin regardless of type of diabetes. At least that is the case in England.
There is no reason why people with type 2 should be treated as second class citizens.

It is possible to be Type 1 with insulin resistance. I know of a few people with Type 1 who take Metformin.

Nope. Ng17 1.6.10 for type 1 now allows all type 1 to have either cgm or flash sensors. https://www.nice.org.uk/guidance/ng17/chapter/Recommendations#blood-glucose-management

Type 2 have criteria to meet as linked to above.

 

[richieworld]

That’s good that you see the positives.

In the past sadly some drs considered being on insulin enough to classify you as type 1, or a dka (much more common in type 1 than 2 but still possible in type 2) or even if you weren’t achieving control the way they expected you to as a type 2. He’s hardly going to call out another dr for misdignosing you. Were you always called type 1 or was there some confusion originally “

Yes. I was told that Type 1 was definitely correct. Got it at the age of 38. Straight onto Insulin from the word go. For the last 2 years i have increased my dose quite a lot. I had a special blood test 6 weeks ago where i had to lay down for 15 minutes before hand. This apparently seperates enzymes and they can see how much insulin your body is making. I have been put on Metformin to help my body process the insulin better. Low dose to start with but have to increase over the next month or so to 4 tablets a day.

Thanks you for you help

 

[catinahat]

he just said that they know a lot more about diabetes now than they did 10 years ago

That's really strange, I'm not a Dr or medically trained in any way, not even first aid. Even so I learned a lot more than ten years ago that the difference between T1 and 2 is that type one's don't make any insulin and two's make it but don't use it too well.
I must say I have to applaud your attitude, many people would have reacted angrily to such a misdiagnosis.

 

[HSSS]

Yes. I was told that Type 1 was definitely correct. Got it at the age of 38. Straight onto Insulin from the word go. For the last 2 years i have increased my dose quite a lot. I had a special blood test 6 weeks ago where i had to lay down for 15 minutes before hand. This apparently seperates enzymes and they can see how much insulin your body is making. I have been put on Metformin to help my body process the insulin better. Low dose to start with but have to increase over the next month or so to 4 tablets a day.

Thanks you for you help

Well obviously they believed that then. I was more asking why they thought that then, ie on what basis they diagnosed type 1 originally. Possibly difficult to know now though. Eg Did they actually test how much insulin you produced back then? C peptide for example? Or do antibody tests? Or base it on their understanding of symptoms?

As you are type 2 it makes sense that your insulin needs have increased over the years. Adding insulin to an insulin resistant (as opposed to deficient as in type 1) body actually makes it more resistant in the long term even whilst it lowers blood glucose in the short term. Hence the focus on reducing circulating insulin and demand for it by those following a low carb diet and doing intermittent fasting.

 

[Lamont D]

My pancreas is still producing Insulin apparently. I did ask how this diagnosis has now changed and he just said that they know a lot more about diabetes now than they did 10 years ago. I’m not angry in anyway, actually quite excited at the thought of possibly coming off of insulin sometime in the future.

What a load of rubbish, they still haven't got it totally, otherwise you would have got specialist help like I did just over ten years ago. I was misdiagnosed in 2009 with T2. however due to hypos, I was referred and consequently found to be non diabetic, with hypoglycaemia.
Have you ever had episodes of hypoglycaemia?
There is more conditions than T1,T2, etc. None your GP could diagnose. As the tests could only be done by a specialist.

 

[Fenn]

After being misdiagnosed I have serious trust issues regarding their expertise, I’m expecting another reversal to T2 one day, I take metformin As well as insulins, the consultant said to me “why are you still taking metformin?” I replied “dunno” so he moved on lol, trust issues.

 

[jonathan183]

Yes. I was told that Type 1 was definitely correct. Got it at the age of 38. Straight onto Insulin from the word go. For the last 2 years i have increased my dose quite a lot. I had a special blood test 6 weeks ago where i had to lay down for 15 minutes before hand. This apparently seperates enzymes and they can see how much insulin your body is making. I have been put on Metformin to help my body process the insulin better. Low dose to start with but have to increase over the next month or so to 4 tablets a day.

Thanks you for you help

Did you ask what type of testing they have done and whether they know your body is producing insulin in a normal or even high range ?

 

[EllieM]

Hmm I guess they did a cpeptide test? A recentish scottish study where they tested all their existing t1s for cpeptide had a significant number rediagnosed as t2 or mody and some came off insulin. In @richieworld 's position I might ask whether mody is a possibility though maybe age at diagnosis rules that out???

 

[HSSS]

Hmm I guess they did a cpeptide test? A recentish scottish study where they tested all their existing t1s for cpeptide had a significant number rediagnosed as t2 or mody and some came off insulin. In @richieworld 's position I might ask whether mody is a possibility though maybe age at diagnosis rules that out???

Which is why I asked about how he was originally diagnosed as this study proves that original diagnosis isn’t always as thorough or certain as it could be (in both T1&2)