Introduction and queries on LADA testing

Songster1977

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Hi all - first post here, looking for some advice on test interpretation. I should say that I'm a molecular biologist by training, with an undergraduate / medical student level of understanding of diabetes, so I know the basics already.

Some relevant background to start with.

FAMILY HISTORY

* 1 parent insulin dependent diabetic for ~35 years.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin and diagnosed as Type I. No record of molecular tests done so I have no idea about antibodies.

* 1 sibling currently insulin dependent.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin. Diagnosed with LADA after ruling out a couple of the MODY syndromes. Tested for GAD antibodies 5 times - initially negative but became positive over time. C peptide levels initially within normal range but declined over time. During the "honeymoon period", their condition deteriorated permanently after any illness - e.g. after a cold, their glucose control would worsen and not get better, requiring more medication each time until they became insulin dependent

So overall there's a strong family history suggestive of LADA, with autoimmune attacks on the pancreas occurring in bouts triggered by other illnesses. Both parent and sibling were skinny / normal weight.

SELF
* Diagnosed diabetic in early 2018 at age 40.

* I initially dismissed symptoms as stress (I'd made it far enough that I thought I was clear given both relatives had onset almost the exact day they turned 30) but eventually it became undeniable. Bought myself a test kit, got a fasting reading of >12 mmol/l, notified GP who did a confirmatory blood test and got put on metformin.

* No antibodies detected at this stage, so I was initially diagnosed as Type II but with a weather eye out for the likelihood of LADA. 118kg at time of diagnosis, been roughly constant since (yes I'm a lardbucket, yes I'm trying to work on it, no it's not easy).

* Hba1c of 75 mmol/mol at diagnosis. Metformin dose escalated to max 2g/d, which brought Hba1c to 49 mmol/mol.

* At this point I was still seeing fasting blood glucose levels of 8+ by finger prick, and 15+ after any meal including light carb (~20g) meals. That didn't really agree with an Hba1c of 49 mmol/mol given that this supposedly indicates an average blood glucose of 7.9 mmol/l.

* The hospital consultant said that I was just worrying myself, that I must be coming down lower overnight, to stop doing finger prick tests and trust in the Hba1c measurements. Foolishly, I did.

* Metformin gave me the raging shits for about the first year. Horrible stuff, but so it goes.

* Things stayed roughly stable until the end of 2019 - weight constant, Hba1c rising very slowly. Hospital consultant suggested saxagliptin when my Hba1c hit 55 - I asked for time to think due to reported GI side effects, at which point the consultant discharged me to the care of the local GP team. Not accustomed to patients having questions, I guess.

* Early to mid-pandemic (~early 2021) - Hba1c levels still creeping up, now at ~65 mmol/mol. Started on saxagliptin, which to date has had no noticeable effect whatsoever, but at least there are no side effects, so what the hell, I'll keep taking it. Regular monitoring was a bit disrupted through 2020/21, so I can't point to specific events that exacerbated anything.

* Nov 2021 - From here on I started feeling REALLY rough - waking regularly overnight to pee / drink, brain fog and difficulty staying awake after meals. Decided to trial the Freestyle Libre, which immediately showed I was in a bad way. 24hr average blood glucose was 13.5 mmol/l, with a general fasting level of ~10 mmol, and no readings below 9 mmol/l over the course of 2 weeks. Excursions to 18+ after meals.

* The timing is potentially coincidental, but it did seem that things got sharply worse when I had my booster jab, which would fit with a general immune stimulus causing an autoimmune exacerbation - i.e. consistent with my sibling.

* At some point during the pandemic I lost 8kg without really changing diet - I think most of that was after things got worse recently.

* GP did a new Hba1c in mid Dec (back up to 74 mmol/mol), immediately prescribed Gliclazide MR 30mg (commenced 23/12) and ordered a new round of antibody tests. The lab refused to run the tests as they said there was no clinical value in them given the previous negative test in 2018. Has anyone else had this happen?

* 30mg gliclazide did sod all, so they've just upped the dose to 60mg a few days ago (commenced 05/01). Now feeling slightly more human, but fasting glucose is still around 8.5 mmol/l. Postprandial peaks are a bit lower now. I expect they'll keep gradually titrating the gliclazide dose up unless I start getting lows (no chance).

***************************

So, that's me. Overall it could be Type II just getting worse, or it could be a slow honeymoon period for LADA. The labs refuse to run the tests that would tell them which is which, and I'm now on gliclazide, which will probably accelerate the beta cell deterioration if it is LADA.

In desperation I paid privately for a new set of antibody tests - bloods taken today, should hear back in a week or so. At the same time I got a metabolic panel done, which came back within hours and showed the following:

* Fasting glucose: 8.9 mmol/l (yikes)
* Hba1c: 68.3 mmol/mol (gliclazide bringing it down a bit?)
* Cholesterol: 5.2 mmol/l (v slightly up but nothing to panic about)
* HDL% of total: 23% (fine)
* C reactive protein: 5.3 mg/l (slightly up but not unexpected)
* Insulin: 32.5 mIU/l (above normal range)


I think the elevated insulin result suggests it's type II and not LADA, but I'd be grateful for expert opinions, particularly given that the gliclazide will be forcing my beta cells to work overtime.

The number is well above the normal fasting range, I know - but is it far enough above the normal range? A blood glucose level of 8.9 mmol/l is what most healthy people would see at the peak of a glucose tolerance test, and insulin would be expected to go much higher in those conditions. The eMedicine site (which I can't link yet) gives a reference range of 18-276 miU/l for insulin levels after glucose administration.

Can I in fact interpret the insulin result at all given the fact that I'm on three different meds (metformin, saxagliptin, gliclazide) and had such a high fasting blood glucose? At some point in the next few days I should get the results of the antibody test and a C-peptide test, but I guess for the latter the same questions apply: is it interpretable at all my current treatments?

Another more general question is that ever since 2018, my Hba1c has been lower than expected given my actual blood glucose results. When things were brought initially "under control", my Hba1c was 49 (= average glucose of 7.9 going by the calculator on this site) but I was never getting readings under 8. Today, the Libre is predicting an Hba1c of 77, but the blood test showed 68. It's not a big discrepancy, but it's been consistent for several years now. Is this something I should worry about and tell the GP about?

Any comments welcome! I promise to update with antibody test results once I have them.
 
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Fenn

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Hi welcome

No idea why but I really enjoyed reading your story, something that long would normally switch me off by the second paragraph but I was gripped, I think it’s the way you write hehe.

I am by no means smart enough to answer your questions but wanted to say hi and I look forward to the next installment, best wishes.
 

mouseee

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645
So much information!
Can't do advice either although I think it was a good idea to do the private test as with the family history it would make sense.

Someone more useful will be along soon though!
 

EllieM

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Have you been tested for MODY?

As for the insulin test, I suspect the meds may muddy the result, but my googling is failing to tell me much other than for a cpeptide test your doctor may tell you not to take certain meds beforehand.

We're not allowed to diagnose on these forums, and I'm not going to attempt to anyway, but if it is LADA you will presumably stop producing insulin eventually and then it will become obvious, specially since you are testing your blood sugar regularly.
If you think that is a possibility you might want to keep an eye on your ketones as well.

Some T2s here need to go virtually keto to control their levels, so it may be worth revisiting your diet and checking for hidden carbs.

And some people just don't fit neatly into one of the diabetic boxes.

Good luck.
 

Songster1977

Member
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5
Have you been tested for MODY?

As for the insulin test, I suspect the meds may muddy the result, but my googling is failing to tell me much other than for a cpeptide test your doctor may tell you not to take certain meds beforehand.

Yeah, ideally I'd have got the test done by the NHS, or at least a private test before the doctor put me on gliclazide to get a "clean" background reading of insulin and C-peptide, but I didn't feel confident to just stop it off my own bat. Ketones are fine - finger prick meter shows zero even during high spikes, and maybe a trace if I try going carb-free for a day (i.e. normal dietary ketosis).

Not been tested for MODY, but given that the MODY syndromes are pretty much all monogenic it would be far too much of a coincidence for both my relatives to be non-MODY diabetic and me to be MODY.
 
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ert

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Your c-peptide should have been taken rather than the inconclusive fasting insulin. Have you had a c-peptide recently? Have a look at the following ranges and timelines for the c-peptide test.
https://www.exeterlaboratory.com/test/c-peptide-plasma/
It needs to be interpreted together with your blood glucose.
 

ert

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C-peptide test was taken at the same time (yesterday), but the turnaround is a bit longer.
Hopefully the c-peptide will be able to help with your diagnosis.
 

Alexandra100

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The lab refused to run the tests
I suspect I may be LADA, so I nagged my GP into sending me for a C-peptide test. AFTER they had taken my blood, they refused to test it, so my only option now is to get a private test costing £229. Worse than the cost, I would have to walk 3+ miles fasting to get to the test site, which would most probably leave me feeling very ill, and faced with another 3+ mile walk home again.
 

Speedbird

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349
Type of diabetes
LADA
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Insulin
My doctor wouldn’t do it for me (the c-peptide test) and wanted to know where I got the information from. Really? I’m skinny and have tried all the low carb and keto options possible along with intermittent fasting. I was losing weight albeit slowly but my BS just kept going up and I was frightened to eat anything. In the end I went to see a specialist privately who did all the tests I needed and it shows that I am hardly producing insulin and it has been in steady decline for over 2 years. Armed with this information I went back to my surgery and am now on Lantus. I can’t tell you how much better I feel. I thought I was just creeking and feeling off as I was getting older so just accepted the situation but now I know what normal feels like. It’s bliss and worth every penny it cost. Of course I still eat low carb, I believe it helps quite a bit and nutritionally good for me. Good luck and I hope you find your answers. Keep us posted.

(Edited by moderator to take out name of specialist)
 
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Alexandra100

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I went to see a specialist privately
Hello @Speedbird, this is all SO interesting to me, as although my bg is not nearly bad enough to impress my GP, it is way above what Dr Bernstein considers normal and I feel terrible much of the time. (A1c 38 / 39) Could you give me more details about your specialist? What level of bg were you getting when you saw him? Did you see him in person or remotely? Thanks.

(Edited by mod to take out name of specialist)
 
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Speedbird

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Hi @Alexandra100 my bg started rise from 2017. It was a steady rise and only slight but I just kept on doing low carb/keto and at times, carnivore. I was, what some classify, as a skinny type 2 bit my visceral fat was very low. I just accepted the fact and presumed that I may just be a TOFI. But felt I was in decline and was having fewer “good” days and started getting used to bad days being normal. My last Hba1c was up again at 7.8 ( not tragically bad ) and it was just getting higher with each review.
In 2019 I had a Medicheck blood test and it showed low producing insulin but no insulin intolerance. It may be that I wasn’t producing enough of the insulin to be intolerant but I don’t know. That was the time I first thought to tell my GP about the result but he dismissed it.
In the end it was like fighting a battle I couldn’t win. Even just looking at a piece of cheese would raise my blood sugars but I couldn’t afford to lose any more weight so I decided to make a private appointment with a specialist in person and he answered all my questions and did the appropriate tests.
I am so glad I did and it was worth every penny. He just took one look at me and suggested I may be LADA. Armed with all the information he gave me and the test results, my c-peptide test shows an even lower number than the 2019 result so definitely in decline, I took it back to my gp and I am now on a low dose of long lasting Insulin.
I hope this helps and just ask if you want anymore info.
This forum was such a help too but I felt a failure when I kept reading all those wonderful results others where getting on their way of eating, something I could not achieve.

(Edited by moderator to take out specialist's name and details)
 
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Songster1977

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Antibodies all negative, C-peptide slightly elevated (noted that this was while on gliclazide). So, currently looking more like T2D than LADA. Still no explanation why things have got worse to the point where metformin alone isn't enough. So I guess I carry on as things are for now.
 

ert

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Antibodies all negative, C-peptide slightly elevated (noted that this was while on gliclazide). So, currently looking more like T2D than LADA. Still no explanation why things have got worse to the point where metformin alone isn't enough. So I guess I carry on as things are for now.
What was your c-peptide result? Was it fasting or not? And your fasting glucose?
 
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ert

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Swillbos

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With all of the cases of diabetes in your family and the magnitude of your c-peptide (1493 pmol/L), there must be a case to test for MODY.

C-peptide unit conversion: http://unitslab.com/node/111
Exeter University https://www.exeterlaboratory.com/test/c-peptide-plasma/
Antibodies all negative, C-peptide slightly elevated (noted that this was while on gliclazide). So, currently looking more like T2D than LADA. Still no explanation why things have got worse to the point where metformin alone isn't enough. So I guess I carry on as things are for now.


Poor you Songster, I was re-diagnosed from T2 to T1.5 in 2019, it was tricky enough then without a pandemic, so I really feel for you!

I am re-posting something I wrote when I was first re-diagnosed from T2 to LADA.

My journey was a bit slower than most, but arrival at the need for insulin was ultimately inevitable, and the final 'step change' was pretty abrupt and alarming: unintended weight loss (this after six plus years of really really slow progress!), endless trips to the loo, fasting blood sugars in the 14/15 range, added to the UK NHS dilemma of the limitations of GP vs hospital treatment. While this final stage might look a bit like your recent experience, much of the rest of it looks different, particularly in terms of family history:

* Limited family history of diabetes: father had T2 diagnosed in his 70's, but nothing else
* Very strong personal and family history of autoimmune disease, in my case thyroid disease (hyper-thyroid in my teens, hypo-thyroid since the age of 40) reflected in GAD score

It seems to me that autoimmune disease rather than family disease of diabetes was the stronger determinant of LADA in my case. As @ert suggests MODY might be a consideration, even though your sibling tested negative

The thing that grabbed everyone's attention and moved me immediately from the GP to the hospital service and on to insulin was my high ketone levels. I am not sure if this has been tested for you, nor what impact your current meds and pancreatic function levels would have on this test, but just a thought.

Please disregard anything I have written that doesn't seem relevant, re-reading it I was still trying to get my head round my re-diagnosis. This disease really does mess with your head! For the previous couple of years I thought I was a 'failed type 2', only had myself to blame, if only I'd tried harder with diet and exercise......if I'm truthful I still feel conflicted, but that is what is is to be human:)

Wishing you all the best!

xx

"Between the ages of 30-50, I was overweight, gradually moving up the ranks to full-blown obesity. When I turned 50 I set myself a goal of losing 4 stone over two years. I never really understood how carbs and calories were different but through trial and error I came up with my own DIY weight loss protocol: lots of walking and c1800 cals a day of which no more than a third from carbs, which I estimated at 150g a day. This worked very well for me and I found I was comfortably losing 2-3 pounds every month. When I was diagnosed with type 2 nine months into my regime, I had already lost 1.5 stone (c.10kg) and a tenth of my body weight. The Dr explained the parameters for diagnosis had recently changed, but that at HbA1c of 49, I was officially diabetic. Must admit my initial reaction was disbelief and extreme annoyance that things had changed, but it did spur me on to carry on with my diet and exercise routines.....now I know a lot more I suspect I had probably been diabetic for some time. Three months later my HbA1c had come down to 46 and I was congratulated on "reversing" my diabetes(!)

I lost three stone in a little over a year, and basked in the praise of the local practice nurse......I kept the weight off for a year, and then stressful work and family illness threw me off course, and weight started creeping back on. Nonetheless it was still an unpleasant shock to me when my GP suggested the time had come to start Metformin. It was then that I found this forum and started reading up, and realised that of course I hadn't reversed anything. I responded very well to Metformin (2 x standard 500mg - never had any problems with digestion after the first week or so) and discovered the joys of intermittent fasting, low carb baking and so much else! Over the course of seven years I have lost over five stone (34kg) and a third of my body weight but very, very slowly. (Added 3/02/22: final weight loss was rapid)

Things started to unravel a bit last summer and Metformin was increased to 1500mg. Then I had a step change in April, no matter what I tried I suddenly couldn't get my blood glucose lower than 15. Started on full whack Metformin (2000mg slow release) and 2mg Glimepiride, fully expecting great results....absolutely zero response, moved up to 4mg Glimeperide and still no improvement. Started panicking, GP told me to hang on in there and give it a chance, but ended up getting referred to the local hospital service and started insulin ten days ago.

I can't tell you how much better I feel now, I don't think I realised how poorly I was until I started insulin. I had high ketones and probably did very well to avoid DKA. Turns out I am LADA after seven years thinking I was type 2: islet cells positive for antibodies, GAD>2,000, HBA1c of 107......"
 

mariavontrapp

Well-Known Member
Messages
261
Type of diabetes
Type 2
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Insulin
Hi all - first post here, looking for some advice on test interpretation. I should say that I'm a molecular biologist by training, with an undergraduate / medical student level of understanding of diabetes, so I know the basics already.

Some relevant background to start with.

FAMILY HISTORY

* 1 parent insulin dependent diabetic for ~35 years.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin and diagnosed as Type I. No record of molecular tests done so I have no idea about antibodies.

* 1 sibling currently insulin dependent.
Onset at age 30, was initially diagnosed as early onset Type II but rapidly progressed to insulin. Diagnosed with LADA after ruling out a couple of the MODY syndromes. Tested for GAD antibodies 5 times - initially negative but became positive over time. C peptide levels initially within normal range but declined over time. During the "honeymoon period", their condition deteriorated permanently after any illness - e.g. after a cold, their glucose control would worsen and not get better, requiring more medication each time until they became insulin dependent

So overall there's a strong family history suggestive of LADA, with autoimmune attacks on the pancreas occurring in bouts triggered by other illnesses. Both parent and sibling were skinny / normal weight.

SELF
* Diagnosed diabetic in early 2018 at age 40.

* I initially dismissed symptoms as stress (I'd made it far enough that I thought I was clear given both relatives had onset almost the exact day they turned 30) but eventually it became undeniable. Bought myself a test kit, got a fasting reading of >12 mmol/l, notified GP who did a confirmatory blood test and got put on metformin.

* No antibodies detected at this stage, so I was initially diagnosed as Type II but with a weather eye out for the likelihood of LADA. 118kg at time of diagnosis, been roughly constant since (yes I'm a lardbucket, yes I'm trying to work on it, no it's not easy).

* Hba1c of 75 mmol/mol at diagnosis. Metformin dose escalated to max 2g/d, which brought Hba1c to 49 mmol/mol.

* At this point I was still seeing fasting blood glucose levels of 8+ by finger prick, and 15+ after any meal including light carb (~20g) meals. That didn't really agree with an Hba1c of 49 mmol/mol given that this supposedly indicates an average blood glucose of 7.9 mmol/l.

* The hospital consultant said that I was just worrying myself, that I must be coming down lower overnight, to stop doing finger prick tests and trust in the Hba1c measurements. Foolishly, I did.

* Metformin gave me the raging shits for about the first year. Horrible stuff, but so it goes.

* Things stayed roughly stable until the end of 2019 - weight constant, Hba1c rising very slowly. Hospital consultant suggested saxagliptin when my Hba1c hit 55 - I asked for time to think due to reported GI side effects, at which point the consultant discharged me to the care of the local GP team. Not accustomed to patients having questions, I guess.

* Early to mid-pandemic (~early 2021) - Hba1c levels still creeping up, now at ~65 mmol/mol. Started on saxagliptin, which to date has had no noticeable effect whatsoever, but at least there are no side effects, so what the hell, I'll keep taking it. Regular monitoring was a bit disrupted through 2020/21, so I can't point to specific events that exacerbated anything.

* Nov 2021 - From here on I started feeling REALLY rough - waking regularly overnight to pee / drink, brain fog and difficulty staying awake after meals. Decided to trial the Freestyle Libre, which immediately showed I was in a bad way. 24hr average blood glucose was 13.5 mmol/l, with a general fasting level of ~10 mmol, and no readings below 9 mmol/l over the course of 2 weeks. Excursions to 18+ after meals.

* The timing is potentially coincidental, but it did seem that things got sharply worse when I had my booster jab, which would fit with a general immune stimulus causing an autoimmune exacerbation - i.e. consistent with my sibling.

* At some point during the pandemic I lost 8kg without really changing diet - I think most of that was after things got worse recently.

* GP did a new Hba1c in mid Dec (back up to 74 mmol/mol), immediately prescribed Gliclazide MR 30mg (commenced 23/12) and ordered a new round of antibody tests. The lab refused to run the tests as they said there was no clinical value in them given the previous negative test in 2018. Has anyone else had this happen?

* 30mg gliclazide did sod all, so they've just upped the dose to 60mg a few days ago (commenced 05/01). Now feeling slightly more human, but fasting glucose is still around 8.5 mmol/l. Postprandial peaks are a bit lower now. I expect they'll keep gradually titrating the gliclazide dose up unless I start getting lows (no chance).

***************************

So, that's me. Overall it could be Type II just getting worse, or it could be a slow honeymoon period for LADA. The labs refuse to run the tests that would tell them which is which, and I'm now on gliclazide, which will probably accelerate the beta cell deterioration if it is LADA.

In desperation I paid privately for a new set of antibody tests - bloods taken today, should hear back in a week or so. At the same time I got a metabolic panel done, which came back within hours and showed the following:

* Fasting glucose: 8.9 mmol/l (yikes)
* Hba1c: 68.3 mmol/mol (gliclazide bringing it down a bit?)
* Cholesterol: 5.2 mmol/l (v slightly up but nothing to panic about)
* HDL% of total: 23% (fine)
* C reactive protein: 5.3 mg/l (slightly up but not unexpected)
* Insulin: 32.5 mIU/l (above normal range)


I think the elevated insulin result suggests it's type II and not LADA, but I'd be grateful for expert opinions, particularly given that the gliclazide will be forcing my beta cells to work overtime.

The number is well above the normal fasting range, I know - but is it far enough above the normal range? A blood glucose level of 8.9 mmol/l is what most healthy people would see at the peak of a glucose tolerance test, and insulin would be expected to go much higher in those conditions. The eMedicine site (which I can't link yet) gives a reference range of 18-276 miU/l for insulin levels after glucose administration.

Can I in fact interpret the insulin result at all given the fact that I'm on three different meds (metformin, saxagliptin, gliclazide) and had such a high fasting blood glucose? At some point in the next few days I should get the results of the antibody test and a C-peptide test, but I guess for the latter the same questions apply: is it interpretable at all my current treatments?

Another more general question is that ever since 2018, my Hba1c has been lower than expected given my actual blood glucose results. When things were brought initially "under control", my Hba1c was 49 (= average glucose of 7.9 going by the calculator on this site) but I was never getting readings under 8. Today, the Libre is predicting an Hba1c of 77, but the blood test showed 68. It's not a big discrepancy, but it's been consistent for several years now. Is this something I should worry about and tell the GP about?

Any comments welcome! I promise to update with antibody test results once I have them.
Hi - sorry this is a long time after your post, but could I ask do you still think the covid booster could have been involved? My diabetes has completely changed in the last six weeks with a massive hba1c increase to 107 and fbg of 19-20mmol. I had the Moderna booster six weeks ago