Hi all, I had my first appointment with the diabetic consultant yesterday since being diagnosed with type 1 in April. For a bit of a back story I’m 24 and had an A1c of 125 when diagnosed was initially told I was type 2 and put on medication (Gliclazide) but my levels were still high so got referred to a diabetic nurse who diagnosed me as type 1 and I’ve been dependent on insulin ever since. However during my appointment yesterday the consultant said to me that he thinks the first dr maybe right and I could be type 2 diabetic as I didn’t loose excessive weight before being diagnosed and didn’t go into DKA for the three months between being diagnosed and going on insulin. He’s sending me for an antibody test to figure out which type I am but I feel so overwhelmed with this news. I really believe it’s type one but I don’t know what to think anymore. Has anyone had any experience with this?
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Dr questioning if I’m type 1
- Thread starter Jas_99
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Were your symptoms sunden or guradele. Many do but I don't think every type 1 diabetic gets DKA before being diagnosed
Robin
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I was misdiagnosed as Type 2, then reclassified as Type 1, but only on the result of an antibody test, because I’d managed to stabilise my levels with Gliclazide and a very low carb diet (I now know that this wasn’t a good idea, as it could have given me hypos, but given that my own insulin production was very low, it didn’t). That staved me off DKA during that period, stabilised my weight, and reduced my HbA1c to around 80. I had been unintentionally losing before diagnosis, though.
My initial HbA1c was 152, and I remember the nurse saying she was surprised I was still walking around at that level! (I was, but it felt like I was wading through treacle).
My initial HbA1c was 152, and I remember the nurse saying she was surprised I was still walking around at that level! (I was, but it felt like I was wading through treacle).
Wow! This is so reassuring because this is exactly what happened to me!
I would say over the space of a few months so in between gradually and suddenly
Ah okay. I didn't recognize t
them at the time but thinking back to it I probably did have symptoms for at least a month or 2 before being diagnosed.
Robin
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Same for me, looking back, I had unexplained symptoms like lots of Thrush, a dry mouth, that I really didn’t attribute to thirst, for months, but mentally attributed them to something else.
Sally71
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Type 1 tends to come on more slowly when you are an adult at diagnosis and not a young child, there are many stories on this forum of people who were misdiagnosed as type 2 and survived quite well on type 2 medications for a while before they didn’t work any more. My mum was 22 when she was diagnosed and with hindsight she thinks she was getting symptoms up to 2 years before, she only went to the doctor when a colleague told her to because he'd noticed how thirsty she was all the time (he had previously been a vet and had treated diabetic animals)
Bruce Stephens
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I don't think it's uncommon. You can listen to an interview with someone who had a bit of a journey like that on the Type 1 on 1 podcast: https://www.spreaker.com/user/16467705/ami-bennett-when-type-1-diabetes-gatecra
She and the podcast host were friends before, and later (after the diagnosis of Type 1 was confirmed) they recorded a number of often very funny episodes that are the Diaries episodes (from April to November 2022): https://www.spreaker.com/show/type-1-on-1-diabetes-stories
Bruce Stephens
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While she ended up as Type 1, it's of course possible that you'll end up with some different diagnosis.
Thankyou this is really useful I’ll give it a listen!! ☺️
rebrascora
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I was 55 at diagnosis and my symptoms came on suddenly one night after I had been out for a meal, in that I suddenly started feeling a thirst that nothing would quench and I literally drank pint after pint of water for the next two weeks and weeing 4-5 times every night as well as through the day of course. After 2 weeks of cutting sugar from my diet, I contacted the GP via eConsult and got an Hba1c of 114. No ketones. They assumed I was Type 2. I had a further 6 weeks of reducing my carb intake down to the bare minimum plus Metformin and Gliclazide but my HbA1c was slightly up at 116 so they started me on insulin. A couple of months later I had GAD and C-pep tests and whilst the GAD was borderline (probably because I had been started on insulin and my flagging beta cells were recovering a bit) my GAD antibody test came back positive. I have never had ketones. I do have rapid weight loss but 6 weeks of very low carb and low fat was a big calorie deficit. We are all different and I wonder if the doctor you saw was an experienced consultant or a junior registrar? My experience of the latter was that they can know very little but be unaware of how little they know, until you start asking difficult questions. I do not mean to be derogatory and everyone has to start learning somewhere but it concerns me that they interview patients unsupervised. This one wrote down in my notes that I took 78 units of Levemir when I told her I took 7-8 units of Levemir and she didn't question that large dose even though I was relatively newly diagnosed Type 1 and that would be way beyond what I should be using. If I had been taken to hospital sometime unconscious (road accident or whatever) and my records checked, a dose like that could easily prove fatal!
Thankfully I have always had appointments with the consultant since then.
I hope your GAD antibody test comes back positive. It is very unsettling to have your diagnosis challenged, especially when you are just getting to grips with managing things. It seems to take several weeks for the GAD antibody results to come back.... it was a good 6 weeks for mine.... so do be prepared for a bit of a wait. Also, I am afraid to say, the GAD test is not always conclusive for Type 1 and there are other antibodies which don't show with the GAD test although I believe GAD is the commonest. Keeping my fingers crossed for you!
Thankfully I have always had appointments with the consultant since then.
I hope your GAD antibody test comes back positive. It is very unsettling to have your diagnosis challenged, especially when you are just getting to grips with managing things. It seems to take several weeks for the GAD antibody results to come back.... it was a good 6 weeks for mine.... so do be prepared for a bit of a wait. Also, I am afraid to say, the GAD test is not always conclusive for Type 1 and there are other antibodies which don't show with the GAD test although I believe GAD is the commonest. Keeping my fingers crossed for you!
trophywench
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Well - I haven't the slightest idea what tests Kidderminster Hospital would have done on my blood in 1972! Only that they took an armful twice a day so presumably after the tests on Day 1 they were mainly if not only, blood glucose and nowt much else. They did boil my wee up every morning though !
Inka
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Look at it as positive news @Jas_99 You’re having extra tests done to help get a definite answer 🙂 I had antibodies test about 25yrs after I was diagnosed as Type 1 because they thought I might be MODY because my Type 1 was “atypical”. The tests showed I was Type 1. It was good to know for sure - really good.
Very true! Thanks!☺️
The Dr was proferring an out of date and far too common understanding of Diabetes typing. DKA does not necessarily occur with T1 and neither do high ketones. Although GAD will confirm antibodies a negative result does not prove you aren't T1. It's becoming clearer that viruses can cause beta cell damage and not just antibodies. A C-Peptide test is necessary to show your level of insulin and hence the state of your beta cells
Bruce Stephens
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Alternatively, the consultant thinks it's probably T1 but that it's worth checking given the lack of DKA and weight loss.
@DaveB,
Do you have links to papers or research showing virus’ cause the beta cell damage rather than triggering the auto immune response? Not saying I don’t believe it only interested to learn more
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