HbA1c 129.5, high c-peptide, antibody tests all positive. Anyone else out there?

[Mrs HJG]

I am stuck 'diagnosed by nurses' as Type 2 - I haven't posted in the LADA or T1 forums, as not (yet) diagnosed and on the 12month+ wait list to see a consultant, (unless I can go private, which I am actively looking into). Apologies to any who have already read my sorry tale on other threads.

HbA1c 129.5
C-peptide 7.52
Creatinine 9.5
Ratio 0.79
GAD Ab 220.8u/ml
ZnT8 Ab 895.6u/ml
1A2 Ab 1664.1u/ml

Has anybody else had similar results and what happened to you? Trying to cut out the 'why do you need to know what type you are?' comments and concentrate on how soon was a formal LADA/T1 diagnosis given after high HbA1c, c-peptide and antibody tests were positive?

Although I was really lucky my tests were done in the first week 'to rule out T1', since the results came back positive, all urgency has evaporated and I am on the consultant's 'routine' list.

I was on a very low dose (I think) of Levemir for 4 days (8 units at night), and then 10 days on 10 units Humulin M3 (2x5units) then 4 days on 6 units (2x3) all the while building up Metformin. Stopped insulin at 1500g Metformin, and since early January only on 2000g Metformin. I have no insulin in the house as told to take my stockpile back to the pharmacy as c-peptide result was 'definitely T2'! My NHS record remains as T2.

I am keeping to a lowish carb diet, no more than 50g per meal, but probably nearer 100g over the day. A half hour of brisk walking a day exercise. Since 2 weeks after my huge HbA1c result, my BG has only gone over 10 once (**** you tiny Christmas pudding), and above 6.5 a half dozen times after eating something I maybe shouldn't have. My glucomen monitor has me at a 5.2 average for the last fortnight, 5.3 average for 30 days. I am monitoring my BG and basically waiting to see any signs of increase, with some ketone strips for if I go above 10.

Did your consultant/diabetes team immediately recognise LADA?
Did you have to fight to have your diagnosis changed or to see a consultant even after positive antibodies confirmed?
Has anyone been asked when they had their covid vaccines or a recent illness?(My booster, which knocked me out for a couple of days was 10 days before my initial HbA1c blood test and antibody tests - I'd also overreacted to both my earlier AZ jabs, the second just before I started getting thirsty...).
If GAD and/or others antibodies disappear, as they could 6 months after an illness/infection (or immune response to a jab?), can T1 be counted out?
Has anyone been misdiagnosed as T1 and gone on to be T2, or would having positive antibodies at any point always mean T1/LADA but waiting for insulin to be required?
Will being re-tested for GAD etc in 6 months be another frustrating battle?

I realise my questions may be completely ignorant, but try googling anything about antibodies and there are a million covid hits to sift through first!

Thanking you in advance

 

[Daibell]

Hi. I've been thru a similar process over the years. I'm listed as T2 but as my BS control with Basal/Bolus regime is bad I asked for a C-Peptide test which came out as mid-range (and no GAD). Initially the diabetes clinic were dismissive but I insisted on being referred to the consultant and after some useful chats he now agrees I'm effectively T1 but without a conclusive test result and my treatment is based on that assumption. So, insist on a referral. At that HBA1C level I would expect you to be on the Basal/Bolus regime as that's a dangerous level. With a positive GAD you ARE LADA/T1 and the consultant should go along with that. don't worry too much about your recorded type but insist you are given the right treatment to get your BS down.

 

[masonap]

I am stuck 'diagnosed by nurses' as Type 2 - I haven't posted in the LADA or T1 forums, as not (yet) diagnosed and on the 12month+ wait list to see a consultant, (unless I can go private, which I am actively looking into). Apologies to any who have already read my sorry tale on other threads.

HbA1c 129.5
C-peptide 7.52
Creatinine 9.5
Ratio 0.79
GAD Ab 220.8u/ml
ZnT8 Ab 895.6u/ml
1A2 Ab 1664.1u/ml

Has anybody else had similar results and what happened to you? Trying to cut out the 'why do you need to know what type you are?' comments and concentrate on how soon was a formal LADA/T1 diagnosis given after high HbA1c, c-peptide and antibody tests were positive?

Although I was really lucky my tests were done in the first week 'to rule out T1', since the results came back positive, all urgency has evaporated and I am on the consultant's 'routine' list.

I was on a very low dose (I think) of Levemir for 4 days (8 units at night), and then 10 days on 10 units Humulin M3 (2x5units) then 4 days on 6 units (2x3) all the while building up Metformin. Stopped insulin at 1500g Metformin, and since early January only on 2000g Metformin. I have no insulin in the house as told to take my stockpile back to the pharmacy as c-peptide result was 'definitely T2'! My NHS record remains as T2.

I am keeping to a lowish carb diet, no more than 50g per meal, but probably nearer 100g over the day. A half hour of brisk walking a day exercise. Since 2 weeks after my huge HbA1c result, my BG has only gone over 10 once (**** you tiny Christmas pudding), and above 6.5 a half dozen times after eating something I maybe shouldn't have. My glucomen monitor has me at a 5.2 average for the last fortnight, 5.3 average for 30 days. I am monitoring my BG and basically waiting to see any signs of increase, with some ketone strips for if I go above 10.

Did your consultant/diabetes team immediately recognise LADA?
Did you have to fight to have your diagnosis changed or to see a consultant even after positive antibodies confirmed?
Has anyone been asked when they had their covid vaccines or a recent illness?(My booster, which knocked me out for a couple of days was 10 days before my initial HbA1c blood test and antibody tests - I'd also overreacted to both my earlier AZ jabs, the second just before I started getting thirsty...).
If GAD and/or others antibodies disappear, as they could 6 months after an illness/infection (or immune response to a jab?), can T1 be counted out?
Has anyone been misdiagnosed as T1 and gone on to be T2, or would having positive antibodies at any point always mean T1/LADA but waiting for insulin to be required?
Will being re-tested for GAD etc in 6 months be another frustrating battle?

I realise my questions may be completely ignorant, but try googling anything about antibodies and there are a million covid hits to sift through first!

Thanking you in advance

Wow, that's a lot of info to digest... and you're right about Google... whether or not the info is correct there is just far too much stuff out there so stick to known sites such as the NHS or Diabetes UK for your main information.

I'm assuming that you are frequently doing finger prick tests every day? Do you log them in an App? I use MySugr, if you record at least 3 readings a day it will give you an estimated HbA1c reading after 7 days, and then as long as you keep on recording your readings it will update the HbA1c estimate. I find it very accurate and therefore very useful. When I get a blood test from my GP their numbers are very close to the ones I get in MySugr.

I'm type 2 (20 years) and I'm on insulin only (5 years) and for me it is working very very well. I was living in Germany when I started on the insulin and stopped metformin and now I'm back in the UK my Dr is trying to tell me that I'm not diabetic (but I was before I went to live in Germany) and that I need to reduce my insulin but if I eat anything I shouldn't (and I concur with you about the small Christmas pudding, and I only had half of it) my next reading is way way above where I ideally want it to be.

My advice is to keep it simple, keep trying, watch out for carbs, look for hidden carbs in food and drinks, and remember that all sugars are carbs (even honey) and all carbs will quickly turn to glucose so avoid as many as you can, and replace them with protein and fat. I eat lots of eggs, cheese, fish, butter, nuts, meat, etc and of course vegetables, and I feel great most days (I also lost 3 stone in weight which has helped more than I can say).

All the best to you.

I wish you well.

 

[Mrs HJG]

I would expect you to be on the Basal/Bolus regime as that's a dangerous level. With a positive GAD you ARE LADA/T1 and the consultant should go along with that. don't worry too much about your recorded type but insist you are given the right treatment to get your BS down.

Thank you for your reply.

After a fortnight of albeit a low amounts of insulin (max was 10units per day) I was borderline hypo-ing a lot, and having to eat the Quality Street to stave off the 'wobbles', so I came off it and my bloods have been 5.2 average ever since with a lowish carb diet, so I'm grateful to postpone insulin again until I really need it.

I need the recorded type to be right as local nurse deals with the T2s, and seems a bit out of depth will all my figures, and the hospital team only deal with T1s and other more complex cases; I am still showing as T2 and no-one will refer me for the dietician, I had to kick up a fuss for someone to request eye screening, and if NICE recommend more tech for T1s I don't want to miss out, so it has practical uses in my local set up as well as peace of mind.

 

[Mrs HJG]

@masonap Thank you for your lovely reply, I hope your doctor sees your side of things soon.

I am pretty good on the carbs and I have a Glucomen BG meter which is pretty good and does the averages and estimates, currently 5.2, so I am trying not to obsess on the odd blip, especially when I can pinpoint exactly what has caused it.

A 3st weight loss was, I know it's bad to say, but a great bonus; I was feeling pleased that I had found a diet that worked just by thinking about it and still eating the same, until, well it all went a bit serious, but every cloud and all that

Take care.