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Hi, I’m new and confused

R

RigbyT

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She/Her
Hi,

It’s great to be here, I’ve spent a lot of time reading over the past couple of months, finally found you all and thought now was the time to say hi!

I’m 45 and was quite unwell the beginning of the year, finally went to my gp thinking hormonal issues to be told I have diabetes. Due to autoimmune disease being prevalent in my family and my serum ferritin being 442 (ref 30=200) I asked for auto antigen testing. My doctor told me he would request them but they would be negative as I have type 2 and put me on metformin. I’ve drastically changed my diet - cut out all sugar and carbs, I’ve managed to maintain ave glucose of 7.7 on dexcom. My initial HbA1c was 88 and blood glucose over 15, A1c not being tested again till August. Anyhow, my GAD was 15 kU/l (ref 0-4.9) and islet triple cell 91 u/ml. GAD85, IA-2 and ZNT8 (Ref 0-20)

He declared LADA and referred me to the local diabetic team who told me I’m type 2. GAD not high enough and bmi 30. (Until 2 years ago it was 25.) and that I’m well controlled with diet and meds it’s definitely not type 1 - they discharged me for gp to treat.

I’m feeling a little disheartened as I was told the results speak for themselves so really have no idea which professional is right. Has anyone any experience in this? Can the results be wrong? Or have I just misunderstood.

Sorry for the offload, it’s been a draining few months and I just don't know whats right anymore.
 
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I’d believe the diabetic team @RigbyT That’s a low GAD results (they can be around 2000) and you’re well-controlled. I’m not familiar with islet triple cell so can’t comment on that.

Welcome to the forum 🙂
 
Hi there, and welcome! I’m glad you found us and decided to say hi. It sounds like you’ve had quite the whirlwind these past few months. You’ve clearly been proactive and thoughtful in managing your health, and it’s really disheartening to be met with mixed messages and uncertainty about your diagnosis.
Many people here will relate to your experience — LADA (or slow-onset Type 1) can be particularly tricky to diagnose, especially when someone doesn’t fit the stereotypical picture of either Type 1 or Type 2. Autoantibody levels can vary a lot between people, and there’s no hard-and-fast rule about what “counts” — so it’s not uncommon to be told one thing by one healthcare professional and something quite different by another, or for that to happen a few months or even years down the line.
It’s great that you’ve been able to get your glucose levels down and are managing things so well, but of course, that doesn’t mean there isn’t something more going on, and it makes total sense to want clarity so you can plan and feel confident about the future.
Your questions are completely valid. Please keep posting and asking - there’s a lot of experience and understanding on this forum, and hopefully it will help bring some clarity and reassurance. You’re doing brilliantly, even in the face of all the unknowns.
 
HI @RigbyT and welcome to the forum - sorry to hear that your diagnosis has been all over the place (not uncommon, sadly) - I'd definitely side with the Diabetic team in terms of interpreting the results - they have specific training and experience (much more than a GP) - glad you have your BG levels well-controlled and hopefully the oral medication and tweaks to diet will do the trick - it is all very disconcerting, and don't worry about venting off here - we understand the situation and how distressing it can be
 
RigbyT said:
I’ve managed to maintain ave glucose of 7.7 on dexcom. My initial HbA1c was 88 and blood glucose over 15, A1c not being tested again till August. Anyhow, my GAD was 15 kU/l (ref 0-4.9) and islet triple cell 91 u/ml. GAD85, IA-2 and ZNT8 (Ref 0-20)
Click to expand...
Your GAD is only a weak positive at 15 so not conclusive of T1 by itself. I’m not familiar with the range of the other test for if that’s a weak or strong positive. Have you had a cpeptide test to help conclude? Though that would perhaps put you in the T2 club, agreeing with the local diabetic team, since it’s very clear you’re making enough insulin currently with an average bg of 7.7
 
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