Repeated Antibody tests - what now!?

[Mrs HJG]

A year after T1/LADA diagnosis with that whopper of an HbA1c, my Endo repeated my GAD, IA2 and ZnT8 antibody tests before Christmas to see how I am getting on; I dropped to non-diabetic range within 3 months and have stayed that way by refining my low carb diet, exercise and glucose hacks (Glucose Goddess - Jessie Inchauspé), and have stayed off insulin, I am no doubt enjoying the honey-moon.

The results are in and I just wondered if anyone else had honeymooned this way, and how long you stayed off insulin, (I know, I know, but I'm interested!), and what should/could I ask the Endo when he calls to discuss next month?

GAD was 220.8 - now 83.1
IA2 was 1164.1 - now 255.7
ZnT8 was 895.6 - now 1422.9

I had been on insulin for a week when the originals were done, not ideal and could have skewed the results, but can't change that now! I had already stopped taking insulin before the results came in a couple of weeks later because I was hypo-ing on minimal amounts.

Over Christmas I tested my pancreas with a few treats after my usual minimal carb meals, eg. salad and cold meats; tiny stollen bite or mini mince pie (c. 12g carbs) with a big dollop of greek yogurt, BG went higher than usual (up to c.8) but back down quite quickly; and the thinnest slice of Christmas cake (only with a measly iced top), about 25g carbs (which is huge in one go for me!) did produce the quickest biggest spike up to 11.5, but back down without any other intervention, and today I had a slice at lunchtime instead of at dinner time (still so much left to eat!), and then went out for a fast-paced 25 minute walk and no remarkable spike at all (c.8); using Libre. So I can see that higher carbs do send my BG up substantially, but the old endogenous insulin is still hanging on in there!

My 30 day average BG, according to Libre, is better than the 90 day average, including the increased treats over the last 3 weeks, Libre has been pretty accurate for me, HbA1c in December predicted 5.2%, it was 5.3%; now estimating 5.1%.

Not entirely sure where I am going with this, but thoughts, based on experience would be really appreciated because Dr. Google is a black hole of nothing when it comes to LADA that doesn't start with being in hospital with DKA and straight onto insulin

 

[Antje77]

my Endo repeated my GAD, IA2 and ZnT8 antibody tests before Christmas to see how I am getting on

Do you know why they repeated the tests?
Having diabetes plus antibodies confirms an autoimmune (T1/LADA) type of diabetes, it's a diagnostic test.
As far as I know the only reasons for a re-test are doubts with the original diagnosis or academic interest.

Treatment is determined by BG, not antibody level, and it looks like you're doing well on your current approach.

 

[Mrs HJG]

Do you know why they repeated the tests?
Having diabetes plus antibodies confirms an autoimmune (T1/LADA) type of diabetes, it's a diagnostic test.
As far as I know the only reasons for a re-test are doubts with the original diagnosis or academic interest.

Treatment is determined by BG, not antibody level, and it looks like you're doing well on your current approach.

Hi, fortunately for me, he is a real geek and loves numbers and investigating different types of diabetes and their presentation and all the technology and research that goes along side. It is possibly more for his own interest than is practical advice for me.

That said, I've been able to find that my levels are the reverse of what is expected at my age, ZnT8 up and GAD down but overall BG maintained. I've read that GAD go down when there are no more beta cells to destroy, but my insulin doesn't seem to be going away! We talked when I saw him privately in March about what may have been my antibody trigger, (covid jabs were the only thing that coincided), and with the lack of any knowledge in that area, it may be he has 'thoughts'.

He admits I am one of 'his rarities', maybe he means guinea pig!

 

[Antje77]

He admits I am one of 'his rarities', maybe he means guinea pig!

That's a perfectly good reason for repeated tests!

 

[EllieM]

He admits I am one of 'his rarities', maybe he means guinea pig!

Did he do a c-peptide test as well? I would have thought that that would be of interest too.

OK, some wild speculation here. There seem to have been a few recent cases of covid induced temporary diabetes? Any chance you had covid before your diagnosis?

In any case, the reduction in antibodies sounds as though it is good news. Long may your pancreas survive and thrive.

 

[Mrs HJG]

Did he do a c-peptide test as well? I would have thought that that would be of interest too.

OK, some wild speculation here. There seem to have been a few recent cases of covid induced temporary diabetes? Any chance you had covid before your diagnosis?

In any case, the reduction in antibodies sounds as though it is good news. Long may your pancreas survive and thrive.

No repeated c-peptide as it was a good level when tested before, he might request that next time, based on the antibody test results - I'll ask.

Definitely no covid previously; we do the monthly ONS covid testing research, and had done from early lockdown days, and with 5 of us, chances of us all being non-symptomatic, (and then all getting it, with symptoms at different times later), and no-one ever testing positive (we did millions of lateral flows and at least one PCR a month). I am tested for covid antibodies too and mine were in the 'higher' level a fortnight after my first jab, and have remained so ever since (that's the level that would normally be produced by someone who had been hospitalised with covid, and rare in people who have only had the jab) - I am an antibody magnet!!

 

[jonathan183]

I would have thought blood glucose and c-peptide were things to keep an eye on regarding diabetes, they would help determine if you reach a point where a different treatment approach is needed.

 

[Mrs HJG]

I would have thought blood glucose and c-peptide were things to keep an eye on regarding diabetes, they would help determine if you reach a point where a different treatment approach is needed.

Keeping an eye on my levels is a given, and once I regularly start to wake at over 6 and/or go above 8 two hours after eating, (eating what I normally eat, not Christmas treats), then we'll discuss doing something - I have always had the option to eat a 'normal' high carb diet and go on insulin, but I don't want that for many many reasons.

I think that because of the way I initially presented, (129mmol/mol but feeling fine, just a little weight loss and increased peeing - full load of blood tests for persistent backache discovered that one), the possible covid jab trigger and how I have been able to control for 12 months already, means there is a bit more interest in doing the tests than might otherwise happen.

 

[FR]

Hi, fortunately for me, he is a real geek and loves numbers and investigating different types of diabetes and their presentation and all the technology and research that goes along side. It is possibly more for his own interest than is practical advice for me.

That said, I've been able to find that my levels are the reverse of what is expected at my age, ZnT8 up and GAD down but overall BG maintained. I've read that GAD go down when there are no more beta cells to destroy, but my insulin doesn't seem to be going away! We talked when I saw him privately in March about what may have been my antibody trigger, (covid jabs were the only thing that coincided), and with the lack of any knowledge in that area, it may be he has 'thoughts'.

He admits I am one of 'his rarities', maybe he means guinea pig!

Covid AstraZeneca vaccine was my trigger for LADA - was it yours too?

 

[FR]

Would love to know who your doctor is - I’ve been told they won’t retest antibody panels - I was hoping to have mine redone - my GAD was crazy high over 2000

 

[Mrs HJG]

Covid AstraZeneca vaccine was my trigger for LADA - was it yours too?

How do you know it was the vaccine? As far as I know it is only wild speculation, by folks like me who'd like a 'reason'; as far as I know there's no published science, too early days, if anyone is actually investigating at all - but having covid is being researched, but not the vaccines, but would love to know how you found out.

 

[Mrs HJG]

Would love to know who your doctor is - I’ve been told they won’t retest antibody panels - I was hoping to have mine redone - my GAD was crazy high over 2000

Its my Endo, doctor's can't authorise anything, well not in my NHS area anyway. I have better BG than ever 12 months after diagnosis and no need to inject insulin, super high BG at diagnosis but tiny amount of ketones, bit of an oddity. I think it will depend on your presentation, treatment etc - if you are on insulin the antibody numbers are completely unreliable. Obviously budget, consultant knowledge and NHS trust will play their part if you are in the UK.

 

[oldgreymare]

My GAD and c-peptide levels were originally tested about a month into diagnosis and after starting insulin. This was early 2009 in Singapore. This confirmed my diagnosis as Type 1, although in hindsight I was probably LADA for at least 2 years. My current UK diabetes clinic is also a major research centre, so the (geeky) registrar I saw had these tests repeated for completeness. Only GAD Ab tests, I've never had a full Ab panel.

2009 - GAD 76 U/ml (normal 0.0. -0.8 reference)
2021 - GAD 1418 U/ml (low positive 5.0 - 30 reference)

2009 - c-peptide 246 pmol/L (normal 364 - 1655 reference)
2021 - c-peptide < 3pmol/L (basically not detectable)

The c-peptide results were not a shock as I can now be triggered into DKA symptoms quite quickly if my insulin isn't working.

Not anticipated was the massive rise in GAD Ab, as I thought it would fall if my beta cells had been comprehensively killed off. But I understand that GAD Abs can also be raised in other autoimmune conditions, including thyroid disease and pernicious anaemia plus some very rare neurological conditions. Thankfully I have no symptoms of anything but my diabetes, so who knows why?

I've had 4 Covid vaccinations and one mild case of Covid (probably Omicron variant). I didn't really see any changes with my blood glucose readings that could have been linked to these.

For ongoing testing I understand that c-peptide testing can be helpful monitoring the progression of LADA and Type 2 diabetes, but can be distorted by very low carb/keto diets.

 

[AndBreathe]

How do you know it was the vaccine? As far as I know it is only wild speculation, by folks like me who'd like a 'reason'; as far as I know there's no published science, too early days, if anyone is actually investigating at all - but having covid is being researched, but not the vaccines, but would love to know how you found out.

The exact details of your Covid jabs are in your Covid passport, in the NHS App and on your medical record, down to the specific batch number of each injection. Even if you were done at a walk-in centre, or a surgery other than your own, your GP would have been informed.

when I was doing shifts at a vaccine centre, we even had to inform one couple’s GD in New Zealand. They were so incredibly grateful to be done, to be in with a chance of being allowed back into NZ.

 

[Mrs HJG]

The exact details of your Covid jabs are in your Covid passport, in the NHS App and on your medical record, down to the specific batch number of each injection. Even if you were done at a walk-in centre, or a surgery other than your own, your GP would have been informed.

when I was doing shifts at a vaccine centre, we even had to inform one couple’s GD in New Zealand. They were so incredibly grateful to be done, to be in with a chance of being allowed back into NZ.

I know the where/when/what I had for all my jabs and am a mistress of the NHS Apps , but wondered how @FR knew for sure that their vaccine jab triggered their LADA.

 

[oldgreymare]

Hi @Mrs HJG

Do you have any of the evidence that exogenous insulin may affect antibody tests - I've never heard of this before. Also my overall insulin levels have stayed steady pretty constant since diagnosis, just tweaks between the basal and bolus amounts, so unlikely to be the cause of my massive GAD rise over a 12 year gap?

Almost the opposite, my first endo at time of diagnosis wanted me on insulin treatment for 4-6 weeks before c-peptide and GAD Ab tests, as he wanted to see if I had an "exhausted" Type 2 beta cell profile. Sadly I proved to be Type 1, rather to his surprise.

Back to the original topic - I did many moons ago train as a biological scientist - pragmatically, we'll only know any relationship between Covid infection, Covid vaccines, and diabetes onset within the next decade or so - it takes a long time to record enough reliable epidemiological data and tease out causality versus happenstance correlation and realistically requires 100,000s of patient records over years.

 

[Mrs HJG]

Hi @Mrs HJG

Do you have any of the evidence that exogenous insulin may affect antibody tests - I've never heard of this before. Also my overall insulin levels have stayed steady pretty constant since diagnosis, just tweaks between the basal and bolus amounts, so unlikely to be the cause of my massive GAD rise over a 12 year gap?

Almost the opposite, my first endo at time of diagnosis wanted me on insulin treatment for 4-6 weeks before c-peptide and GAD Ab tests, as he wanted to see if I had an "exhausted" Type 2 beta cell profile. Sadly I proved to be Type 1, rather to his surprise.

Back to the original topic - I did many moons ago train as a biological scientist - pragmatically, we'll only know any relationship between Covid infection, Covid vaccines, and diabetes onset within the next decade or so - it takes a long time to record enough reliable epidemiological data and tease out causality versus happenstance correlation and realistically requires 100,000s of patient records over years.

I have googled about again for the research that I read to find the bit about the effect of exogenous insulin on antibody tests, but to no avail - I went down a very deep rabbit hole before posting my original question because I couldn't find any answers, so not sure what links from links I ended up with, sorry.

I am holding out to become a research subject for many reasons, its hard not being 'typical'.

 

[Antje77]

I had no prediabetes or any health issues before the AstraZeneca covid jab

Most T1's don't have any health issues before developing diabetes, so some people are bound to develop it right after a jab, or right after getting married, or right after getting their drivers licence.
Correlation is not the same as causality.
You might well have developed diabetes without that jab (or marriage, or drivers licence), there is no way to tell.

 

[KennyA]

Please do not ask for or disclose personal information on the open forum. If you wish to have a private discussion use the PM system.

Any further requests/discussion in this thread or any other about names of doctors and other potentially sensitive information will be removed.

(edited to remove quote of deleted post)

 

[FR]

Please do not ask for or disclose personal information on the open forum. If you wish to have a private discussion use the PM system.

Any further requests/discussion in this thread or any other about names of doctors and other potentially sensitive information will be removed.

Thanks - apologies - I'm new to the forum - didn’t realise - are their rules I can look up