Uncertainty over T1 or T2

[Eternal422]

Apologies for the following, bit of a vent as I’m feeling like the rug has been pulled out from under me.

I had an appointment with a new diabetes consultant yesterday as a result of my hospital DSN making a referral to get T1 officially recorded on my medical records.

The hospital DSNs all thought I was T1 given the amount of insulin I need to keep good BGs and how sensitive I am to both the insulin and how carbs cause a rise in my BG. I am on 28U Levemir and use Novorapid at a ratio of 1U : 8g carbs.

I was diagnosed T2 some 22 years ago at age 42, on Metformin for 4 years with a steadily increasing HbA1c to 130 when the GP at the time added Glibenclamide which I was on for a year. After a year of both the Metformin and Glibenclamide my HbA1c had risen to 144. At that point I was started on insulin and dropped both Metformin and Glibenclamide, 2 years later my HbA1c had dropped to 44.

I did have a GAD antibody test done, but this was 9 years after initial presentation of diabetes symptoms and, perhaps unsurprisingly was negative.

The consultant doesn’t think I am T1 and is wondering about moving me onto various oral drugs and maybe even off insulin, treating me as a T2. But before that she has requested a c peptide as well as another GAD antibody test.

Needless to say this has thrown me into a bit of a tailspin. Particularly since starting the Libre 2 just over 2 years ago my control and TIR has been really good (around 70%) and my HbA1c is around 45. I am very reluctant to change anything. I am also worried that if the consultant changes my diagnosis to T2 then I will lose NHS funding for the Libre.

I guess I need to wait for the results of the c peptide test. Presumably if the c peptide is zero therefore indicating no endogenous insulin being produced the consultant will officially record a diagnosis of T1? She did say let’s get the c peptide results and then go from there. I would hope it is a discussion rather than me not having any say in my treatment.

Has anyone else had a similar experience and if so how have you got on?

 

[Lucyr]

You need to get the Cpeptide results before anything is decided. 5 years without insulin and no DKA despite high a1c does sound like you could be T2 rather than T1 but you need the Cpeptide, or more antibody tests, to decide.

There will be an old thread of mine somewhere, I was diagnosed t2 for 15 years then changed to type unknown but treated as t1. My Cpeptide was low but not quite low enough for t1, and I had one antibody mildly but not a second, and that was 15 years after diagnosis. I was on insulin within 1-2yrs and diagnosed aged 20-21.

If it turns out you do produce plenty insulin and can manage on oral meds then that would be much easier than insulin. But, if you produce low enough insulin that you need injected insulin then it’s easier to be classified t1. You can retain libre as a t2 but only if you are injecting insulin 2+ times a day and testing bg 8+ times a day.

 

[Eternal422]

Thanks @Lucyr, I guess the c peptide result will be key and interesting to see what it is. The DSNs thought I would have a diagnosis of “presumed T1”. To be fair to the consultant she is being diligent in getting some actual test results rather than going on guesses.

I was wondering that as a 42 year old presenting with symptoms that it may be LADA and a slowly declining insulin production (something I had read elsewhere). But interesting as you say that a high HbA1c and no DKA is indicative of T2 rather than T1. I will have to wait and see the results.

 

[rebrascora]

Yes, something very similar has happened to another member @pawprint91, very recently.
It must be very unsettling for you.
It might help to read all the posts on that thread to be aware of the issues....

Post in thread 'Opinions - Lada or not?'

Oct 30, 2024

Good luck with your C-peptide test IF you decide to have it! It is your blood after all, so up to you if you have the test. Do make sure that you have the correct information to prep for the test. Usually a carb loaded test, so your pancreas is encouraged to produce as much as it can due to a BG in the teens. To be honest I would resent that in itself. Why should we deliberately push our BG above range just to do a pointless test that makes no real difference. I am so indignant on your behalf! Can you tell!! 😡

• rebrascora

• 

 

[Eternal422]

@rebrascora - many thanks for pointing me at the other thread, I’ll have a read.

 

[Robin]

Given that you were put on a drug that’s supposed to stimulate your pancreas into producing insulin all the time, and your HbA1c went up…hopefully that’s an indicator that your c-peptide will come back low, @Eternal422 .
I was misdiagnosed with Type 2 to start with, though it only took a year for me to get reclassified, and I did have a positive GAD test. (I wasnt given a c-peptide, at the time I think they were very expensive.
I had a very high HbA1c, (it was 16.1% in old money, 152.5 in mmols/mol), was losing weight fast and had terrible thirst, felt like i was wading through treacle when I went for a walk etc, yet even when this went on for months because the treatment wasn’t working, I didn’t get DKA, so it can’t always be inevitable. One of the nurses said to me later, ‘I’m not sure how you were still walking around…'
Whilst still being treated as Type 2, suspicions grew, I was given a basal, and my HbAic immediately dropped to 9.0ish% (75ish mmol/mol) and a GAD test was ordered. (i was following a low carb diet as well, because I’d read up on it). At my next clinic appointment, I was taken off all oral meds, and given a basal bolus regime, and my HbA1c dropped to 48.
I do take relatively small amounts of insulin, 1:10 ratio for carbs, and total of 9 units of basal daily, and one of my hospital doctors commented that I was probably still producing a bit of my own insulin, but a lot of Type 1s still do, even if they’ve been Type 1 from an early age. (There is a thread somewhere on the forum posted by @everydayupsanddowns, I think, about some research done in America to this end.) So don’t assume all is lost even if your c-peptide records some insulin production, it’s quite normal, and you still need insulin if it’s nowhere near enough.

 

[Eternal422]

@Robin - thanks for sharing your experience. I remember the hospital DSN who started me on insulin saying that I would start feeling like I had more energy, which was very true. I had got used to high BGs and feeling tired - your “wading through treacle” sounds very familiar! Like you, I also never had DKA despite my high BGs. My GAD test was negative, but this was only done some 9 years after the initial symptoms so I guess that’s not too surprising.

When I had my appointment yesterday I had totally forgotten about the Glibenclamide and only found it last night when going through my old medical records. You would have thought it would have resulted in a lowering of HbA1c, but as it didn’t maybe that meant I wasn’t producing much insulin then? I will have to mention this when I go back for my c peptide results.

 

[Eternal422]

Just had another thought - the only instructions I have for my c peptide test is to have it after breakfast. Nothing about whether I should take insulin or not. The consultant knows I am on insulin so I assume she would have said if I need to not have it with my breakfast as normal.

 

[everydayupsanddowns]

Like you, I also never had DKA despite my high BGs. My GAD test was negative, but this was only done some 9 years after the initial symptoms so I guess that’s not too surprising.

I was diagnosed in my early 20s, and didn’t get to DKA either (though I was testing high for ketones).

Chances of a ‘false negative’ for antibodies significantly increase the more time has passed since diagnosis. Especially if the antibodies have already cleared out beta cells (so are no longer needed)

I think @Robin was referring to the Joslin medallists (who have 50, 60, 70 years under their belts) and a significant number still had measurable cPeptide (and antibodies) suggesting an ongoing beta-cell growth and destruction cycle in some people Dx with T1.

Sorry to hear about your upheaval @Eternal422

Hope all the checks work out, and your clarification makes things easier for you, whatever information is uncovered.

 

[rebrascora]

Just had another thought - the only instructions I have for my c peptide test is to have it after breakfast. Nothing about whether I should take insulin or not. The consultant knows I am on insulin so I assume she would have said if I need to not have it with my breakfast as normal.

I think some clarification would be useful, perhaps via email to the consultant's secretary or a phone call to the clinic helpline if they have one.

 

[Eternal422]

I think some clarification would be useful, perhaps via email to the consultant's secretary or a phone call to the clinic helpline if they have one.

Thanks for the suggestion, I’ll attempt to call them and find out.

 

[Eternal422]

Hope all the checks work out, and your clarification makes things easier for you, whatever information is uncovered.

Thank you! Just when I thought I had a handle on all of this, as much as anyone can (!), along comes this. If the DSN hadn’t said anything I could have carried on as I was being an “assumed T1”. She was doing it so that I could be considered for HCL in the future - what irony!

Oh well, I need to wait and see the results and then have the discussion with the consultant based on that.