Wrongly diagnosed for 20+ years

[Pixiedylan]

Hi All, I’m new here and wanted to introduce myself. I am 53 yrs old and have been diagnosed/treated as a T1 since being diagnosed back in 2004. I immediately started on insulin on diagnosis and have continued to date. I have often wondered why I was Type 1 and not Type 2 as I was in my early 30s when diagnosed. I was assured I was Type 1 because I had ketones at the time of diagnosis and was informed by my consultant that it didn’t really matter because the treatment was similar in both cases. Fast forward 19 years, I am still asking the question, my consultant still fobs me off (same consultant since diagnosis)but then he mentions some anti body tests I should have had after my diagnosis? I never had these tests, we checked back in my notes, no anti-body tests were ever recorded! So about 6 months ago, he agrees to do the tests and it comes back that I do indeed have some of my own residual insulin. The consultant still refuses to say definitively that I have T2 instead of T1, despite sending me a letter (copied to my GP) to say that the tests seem to show that I have some symptoms in correspondence with Type 2. The result is that the consultant still has me down as a T1 but my GP states I am a T2. Why can’t he just say maybe I was misdiagnosed 20 years ago? Despite sending the letter to say I had traits of T2, he still refused to prescribe me Mounjaro around 4 months ago, giving the reason that I was T1 and so couldn’t have it. After a meeting with my nurse and a dietician, we discussed everything and the dietician said she would fight my corner with my consultant re the Mounjaro as the evidence pointed towards T2. Second request, he agrees to let me have it but still doesn’t seem to want to commit himself to T1 or T2, although I guess l must be T2 now. It has all been very confusing and I wondered if anybody else had been through a similar thing? My family history shows a high prevalence of both T1 (grandmother and 3 more of her siblings-early deaths on my maternal side ) and T2 (Dad, grandma on my paternal side) Sorry I’ve gone on for so long on my first post but I just wondered if anybody has any insight(s) into my particular case?!
Thanks

 

[lovinglife]

How confusing for you @Pixiedylan,

I was diagnosed as T1 whilst in hospital for something different but my experience is certainly nowhere near yours but I will share, though I doubt it will help you much.

I was admitted to hospital as an emergency for an unrelated condition, whilst I was in they tested my BG and it just showed as “high” it didn’t drop below 28 so they put me on a sliding scale drip of insulin & glucose. It did come down over 4 or 5 days to 15 but I had high ketones all the time. They decided I was T1 and sent me home with insulin and all that gubbins that being T1 entails.

I immediately made an appointment at my GP because I was very confused and I had a very good relationship with him and trusted him implicitly, he said he thought I was really full on raging T2. He discovered I hadn’t had the antibody tests etc so I had all those and it came back as both he & I had suspected that I was T2 - but this was over a period of a couple of months not the many years you’ve gone through. You’ve made me think though if maybe I hadn’t gone to my GP right away would my story have been a bit different.

He took me off the insulin right away and put me on metformin & max dose Gliclizide which over the next few years with his help & support of me doing low carb I slowly reduced my meds & my carbs until I came off meds altogether.

I don’t really know what to suggest you do, maybe work with your GP on your medication to see if altering or reducing it and see if that works? Whatever you decide I wish you luck in getting it sorted as contrary to what the consultant may have said at the time T1 & T2 are very different conditions, of course there is also many other subtypes that can come under the umbrella of T2 so it may not be that straight forward for you

 

[EllieM]

Hi @Pixiedylan and welcome to the forums, your experience does sound frustrating.

Do you know if you've ever had a cpeptide test? It measures the amount of insulin you produce and is normally done at the same time as the antibody tests. Unfortunately it can sometimes be difficult to differentiate between types of diabetes. I have no idea whether you are T1 or T2 (both seem possible specially given that adult diagnosed T1s or LADAs often have symptoms in common with T2). If you have a lot of family members with diabetes it may also be worth asking for tests for MODY, a genetic form of diabetes which is often accompanied by multiple diabetic family members. It's rare though, so T2 and T1 tend to be much more likely.

If you need to be on insulin there can be advantages to a T1 diagnosis though, because T2s don't get automatic access to cgms such as the libre, and often don't get access to hospital diabetic clinics. So I'd want to be careful what I wished for in your position, though if you turned out to be T2 there is always the possibility that you could come off insulin.

In this study in Scotland they tested the cpeptice of all their T1s who'd been diagnosed for more than 3 years and 7% got rediagnosed to T2 or MODY, and a very few were ab;e 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

Serum C-peptide testing was performed in 859 individuals (90% of the eligible cohort), of whom 114 (13.2%) had C-peptide ≥200 pmol/L. The cause of diabetes was reclassified in 58 individuals (6.8% of the tested cohort). The majority of reclassifications were to type 2 diabetes (44 individuals; 5.1%), with a smaller proportion of monogenic diabetes (14 individuals; 1.6%). Overall, 13 individuals (1.5%) successfully discontinued insulin, while a further 16 individuals (1.9%) had improved glycaemic control following the addition of co-therapies.