Type 1, and GP says Type 2 !

[Andrew2018]

I have been diabetic for about 30 years now, having gone from a glucose intolerance, to full blown type 1 very abruptly in my thirties. All past Diabetic Clinics, and indeed the current hospital one say I am very definitely Type 1, last time I asked, the Consultant thought it was a strange question to ask, and confirmed Type 1.
Now my GP for reasons unknown has me down as Type 2, and regardless of being told they are wrong, still keeps putting me down as Type 2. They recently did a referral to the local CPAP clinic and stated Type 2.
Anyone else find this?. My surgery is not very good on diabetes, however changing surgery is not an option as all local surgeries have had closed books for years, so a change would mean going a long way out of the area.
Being listed as the wrong type throws up issues, from which Blood Glucose Monitor is supplied by the surgery ( they have cheap skated this before until the NICE guidance was quoted to them !), through to causing treatment issues for other conditions.
Anyone else had this problem with a GP?, and did you ever get them to buck their ideas up??
Just for clarity I went from avoiding sugar, to being on insulin, my system literally just packed up. Now on insulin ( basal bolus system) and metformin, the latter due to insulin resistance, if I forget the metformin the insulin doesn't work. This is where I think the GP confusion comes from, they see the metformin and jumpt to the conclusion it's type 2.

 

[In Response]

I don’t understand what you mean by going from glucose intolerance to full blown Type 1.
Glucose intolerance/insulin resistance is type 2. You cannot change from type 2 to Type 1. You can change your type 2 medication to be insulin but you still have type 2.

However, if your endocrinologist definitely considers you to have Type 1, you could call upon the hospital diabetes clinic to assist with correcting your GP’s records.

Do bear in mind that NICE guidelines have recently changed such that anyone with diabetes treated with insulin should have access to Libre. This is only a guideline and some CCGs take time to catch up.

 

[NicoleC1971]

Do you have your endo letters to get your classification changed? The letters normally state the condition in the first line.
Some type 1s do take metformin just as some type 2s take insulin so the meds don't help the problem but may explain the confusion.
Any c peptide test should show results indicating you are not making any insulin after 30 years so wonder if you have access to test results?
I think it does matter, as you say in regards to getting access to FreeStyleLibre and your treatment pathway for regular checks etc.
Good luck.

 

[Outlier]

if your endocrinologist definitely considers you to have Type 1, you could call upon the hospital diabetes clinic to assist with correcting your GP’s records.

This. medic talk to medics. Sometimes they even listen to them, too! Less hassle and more chance of the result you seek. Good luck.

 

[Andrew2018]

This. medic talk to medics. Sometimes they even listen to them, too! Less hassle and more chance of the result you seek. Good luck.

Been there, tried that, still hasn't changed.

 

[Andrew2018]

I don’t understand what you mean by going from glucose intolerance to full blown Type 1.
Glucose intolerance/insulin resistance is type 2. You cannot change from type 2 to Type 1. You can change your type 2 medication to be insulin but you still have type 2.

However, if your endocrinologist definitely considers you to have Type 1, you could call upon the hospital diabetes clinic to assist with correcting your GP’s records.

Do bear in mind that NICE guidelines have recently changed such that anyone with diabetes treated with insulin should have access to Libre. This is only a guideline and some CCGs take time to catch up.

When I was found to have an issue, I underwent glucose absorption tests, and the diagnosis was Glucose intollerance. No medicine at that time was prescribed, and avoiding sugar brought things onto an even keel. The change was very abrupt, and the full range of medication used for type 2 to stimulate insulin production etc failed to work. The Hospital Clinic pronounced Type 1, total failure to produce insulin, and the comment I was very unlucky and "a statistical anomaly" to develop type 1 in my thirties, it's known but rare. It has always been referred to as Type 1 by past GP surgery, and they had bothered to do specialist training in diabetes, the same has also been the case with all consultants seen, type 1. It is unexplained as to how the current surgery seem to think it's type 2. There is no natural insulin production.

 

[becca59]

When I was found to have an issue, I underwent glucose absorption tests, and the diagnosis was Glucose intollerance. No medicine at that time was prescribed, and avoiding sugar brought things onto an even keel. The change was very abrupt, and the full range of medication used for type 2 to stimulate insulin production etc failed to work. The Hospital Clinic pronounced Type 1, total failure to produce insulin, and the comment I was very unlucky and "a statistical anomaly" to develop type 1 in my thirties, it's known but rare. It has always been referred to as Type 1 by past GP surgery, and they had bothered to do specialist training in diabetes, the same has also been the case with all consultants seen, type 1. It is unexplained as to how the current surgery seem to think it's type 2. There is no natural insulin production.

The ignorance of that comment, ‘a statistical anomaly to develop type 1 in my thirties, it’s known but rare.’ 20% of all type 1 diagnosis are over 40.

 

[EllieM]

Hi @Andrew2018 , a lot of the LADA/T1.5 folk here get an original T2 diagnosis, which responds well to low carb and then fails to respond when their insulin production reduces down too low.

And it's called T1.5 because it has elements of T2, including insulin resistance for many? But I don't think the NHS officially differentiate between LADA andT1, they just call everyone T1.

Is there only one GP at your clinic? Maybe you could ask them if they remembers the ex PM Theresa May, who developed LADA in her fifties? If there's more than one, you could name drop LADA to a different one and see if that helps... Maybe you have an older GP who's only heard of T1, T2 and gestational diabetes? (Those were what was around when I was a child/young adult)

Some T2s do gradually stop producing insulin because high blood sugars damage the insulin producing cells, but if the hospital reckons you are T1 then you are.

Are you still being seen by a hospital consultant? Hopefully if you are then they will give you all the correct benefits that T1s qualify for.

 

[Andrew2018]

The ignorance of that comment, ‘a statistical anomaly to develop type 1 in my thirties, it’s known but rare.’ 20% of all type 1 diagnosis are over 40.

Wow. Are you meaning me or the Consultant Specialist who said it?. His comment was thet the vast majority of type 1 cases emerge either before your late teens or in ones 50's and over ( Juvenile onset and mature onset ). I only know that he, at the time, and other consultants since have remarked that type 1 in ones thirties is not common.

 

[Andrew2018]

Hi @Andrew2018 , a lot of the LADA/T1.5 folk here get an original T2 diagnosis, which responds well to low carb and then fails to respond when their insulin production reduces down too low.

And it's called T1.5 because it has elements of T2, including insulin resistance for many? But I don't think the NHS officially differentiate between LADA andT1, they just call everyone T1.

Is there only one GP at your clinic? Maybe you could ask them if they remembers the ex PM Theresa May, who developed LADA in her fifties? If there's more than one, you could name drop LADA to a different one and see if that helps... Maybe you have an older GP who's only heard of T1, T2 and gestational diabetes? (Those were what was around when I was a child/young adult)

Some T2s do gradually stop producing insulin because high blood sugars damage the insulin producing cells, but if the hospital reckons you are T1 then you are.

Are you still being seen by a hospital consultant? Hopefully if you are then they will give you all the correct benefits that T1s qualify for.

Fortunately, for the most part I can rely on the hospital, and yes, they do provide often better service, the problem comes with the likes of meters. I have just had to cease using my Aviva Expert meters because I am told the strips cannot be prescribed anymore as the meter is obsolete ( according to the GP, then they have always disliked this meter due to test strip costs, but had to live with it because the Clinic issued them) Problems arise when for instance the practice wants to issue one thing, like the meter, and the Clinic something different. The cheapest option for a type 2 was issued by the practice, and I had to quote the then current NICE information and the Clinic to get a new Aviva meter.

 

[Antje77]

His comment was thet the vast majority of type 1 cases emerge either before your late teens or in ones 50's and over ( Juvenile onset and mature onset ). I only know that he, at the time, and other consultants since have remarked that type 1 in ones thirties is not common.

The consultant is wrong.

 

[ert]

You need to request a letter from your hospital to your GP to clarify your condition and treatment. What medications are you on?

 

[becca59]

Wow. Are you meaning me or the Consultant Specialist who said it?. His comment was thet the vast majority of type 1 cases emerge either before your late teens or in ones 50's and over ( Juvenile onset and mature onset ). I only know that he, at the time, and other consultants since have remarked that type 1 in ones thirties is not common.

The consultant. As @Antje77 says, he is wrong.

 

[becca59]

@Andrew2018 stop dealing with your Gp and go solely through your hospital team. As a type 1 That is in the NICE guidelines as your right. They dictate medication and equipment. All much more up to date. I have nothing to do with Gp. They just fulfil the hospitals directions. Saves angst and arguments.