Will NHS GP accept results of Medichecks IFAB test if positive?

[Realtiger]

Thinking of testing privately for PA as have not managed to persuade my GP that declining B12 levels are a possible cause of increased fatigue, nerve pain and other symptoms. Latest test showed B12 at 212 range (211 - 911).

I have Hashimotos and have corrected folate deficiency on prescription for the past five months. FBCs fine - no anaemia or macrocytosis although higher MCH (31.6 range 27 - 32) than previously. GP dismissed the idea of further investigations as B12 is within normal range and no anaemia even though I pointed out Hashimotos and PA can go hand in hand. More background in my previous post.

I see that Medichecks offer an IFAB test and more expensive B12 /PA screening which also includes MMA and homocysteine.

Should I wait things out and hope that levels improve on their own or worsen triggering GP intervention, or test privately? If so which test is best - dietary causes have not beeen ruled out.

What would you do? 🤔

[Sleepybunny]

Hi,

I suspect that some GPs will not accept the results of private tests but a positive result in a private IFA test should persuade them to order same test on NHS.

There's no guarantee that a second test will give the same result.

Your GP should know (but might not) that a negative result in IFA test does not rule out PA.

Diagnostic flowchart from BSH Cobalamin and Folate Guidelines which mentions Antibody Negative PA.

stichtingb12tekort.nl/engli...

This link from NICE CKS (Clinical Knowledge Summary) for B12 deficiency and Folate deficiency says

"Antibodies to IF are very specific for pernicious anaemia, however they are only present in around 50% of people."

cks.nice.org.uk/topics/anae...

This means that about half of people with PA will not test positive on IFA test.

[Realtiger in reply to Sleepybunny]

Thank you. Interesting that you might not get the same result - is that because of lab issues or fluctuating antibody levels?

[Sleepybunny in reply to Realtiger]

Hi, I don't know a lot about that issue.

Martyn Hooper of PAS tested negative more than once before testing positive. I suspect both lab issues and fluctuating antibody levels could influence result.

My understanding is that in PA,parietal cells in stomach are lost. Parietal cells produce intrinsic factor protein. If all or most parietal cells have been lost then little or no intrinsic factor is produced therefore few or no intrinsic factor antibodies produced.

[Dandelions]

I’m in a similar situation. Although I have persuaded to doctor to test and I’m waiting for results on antibody test, but I don’t think it includes MMA or homocysteine. So I’m pondering whether to just start supplementing and see how that will make me feel. Or is it worth paying for the medichecks test. It is an expensive one!

I’m a bit confused about it all. And the doctor clearly doesn’t have the knowledge to inform me.

My worry is that if I don’t do the medichecks test will they come back to me in the future to say there’s no B12 problem.

Have you considered just starting to supplement (without further tests)?

(My B12 is at 229 ; range 190-910)

[Lincsangel1 in reply to Dandelions]

"So I’m pondering whether to just start supplementing and see how that will make me feel."

Make sure you have all the blood tests before supplementing... as any amount of B12 supplements can skew results.

You need to be clear of B12 supplements for around 4 months to get accurate results

[Realtiger in reply to Dandelions]

Hello  Dandelions similar boats indeed! You’ve had better luck persuading your GP to test than I have - that’s something.

I’m reluctant to start supplementing as my GP suggested until I’ve got a better idea of the cause as it can affect the results as  Lincsangel1 points out.

Can I ask about your symptoms? Mine seem vague and non-specific and could easily be written off as thyroid, fibromyalgia, or menopause related.

[Dandelions in reply to Realtiger]

Yes, that’s my hesitance too. But it’s such a sloooow process. I have been seeing my doctor since October and asked for B12 tests. There’s a test on medichecks, but it’s expensive (about £280). Is that what I (we) need?

Yes, mine are vague too! Fatigue (later on the day and also after mild exercise; since starting vitamin D supplements I don’t have early morning fatigue as much anymore), struggling to fall asleep, irritability, easily overwhelmed, not quite like myself/doubt myself. Brain fog, my memory isn’t as good, constipation, low sex drive. I have some other things which I’m not quite sure are related: cold hands and feet, knee pain, oily hair, bad body odour, quick to get cavities in my teeth.

My brother’s doctor said he’s got B12 absorption issues, so I’ve claimed family history too.

[Pickle500]

Generally they won't accept private tests. So you could still do them for an indication on your health but GP's rarely use third party evidence to treat a patient.

If I were you, I'd do Medichecks for my own knowledge/peace of mind. And then go back to the GP in a few months for further tests but not tell them you've done your own tests.

GP appointments are like haggling with market traders. We're treated as a commodity and GP's want to explore problems on their own terms, not ours.

[Realtiger in reply to Pickle500]

Yes, I feel I’ve won half the battle just by securing an appointment. The fact that numbers trump symptoms makes it even more frustrating.

Appreciate your advice - I think I will do exactly as you suggest 🙂

[Cornwaller]

Your doctor is not following NICE or BMJ protocols. You have one autoimmune disease, Hashimoto's, and a second, such as PA, is more likely. Your b12 serum levels are indicating possible deficiency and you have symptoms of deficiency. Quite why the GP would not test for PA and also consider trialling treatment is unclear. It is difficult to not conclude that your GP is ignorant.

[Realtiger in reply to Cornwaller]

There was no reasoning with my GP - the lack of anaemia was the deciding factor as far as she was concerned even though I’ve read that only 60% of people with PA present with macrocytosis. Normal FBCs, B12 levels one point within range = no argument!

Also diagnosed with fibromyalgia , endometriosis and raised IGM levels (with unknown cause). My Mum has MS so it would not be at all surprising if I had PA as autoimmune issues clearly run in my family.

[Cornwaller in reply to Realtiger]

This confirms that your doctor is an idiot. I would suggest your health is likely being compromised and that the treatment of your low b12 levels should be considered at the earliest opportunity and whether you have a test for PA is a second order priority.

[Dandelions in reply to Cornwaller]

Yeah.. it’s idiotic. There doesn’t seem much urgency when it comes to B12 deficiency. If I’d go in with a suspicious lump, they’d be all over it. But a suspicion of B12 deficiency doesn’t raise the same response.

[Realtiger in reply to Dandelions]

Hello Dandelions am curious to know if you’ve got any further with this? I stalled due to a busy time at work and am playing the waiting game to see if my B12 levels drop further. Have also had the worst fibro flare up I’ve had for a couple of years in the interim - coincidence? 🤔

[Dandelions in reply to Realtiger]

ugh. You must feel rough. Have your symptoms remained the same? Hm, yeah waiting game would be a slight worry to me as deficiency does do damage. But yes it’s hard when life is busy to follow up/battle with doctors.

My b12 has dropped about 15 points in 4 months. I don’t know if that’s helpful to you. Or even if it’s just a coincidence/fluctuation in numbers.

Still within range. So GP does nothing. The antibody test came back negative too.

I’ve booked a medichecks appointment for the MMA only as that’s now the only thing which hasn’t been tested. It will be interesting to see what comes out. I feel clarity either way is important to me to know how to proceed.

Good luck with your journey!

[wedgewood]

I had my Intrinsic Factor Antibodies test at a Nuffield private hospital. It was positive and was accepted by my GP . So why not try a private hospital test rather than Medichecks ?

[Realtiger in reply to wedgewood]

Good thought wedgewood - I had thought of this but can’t see IFAB on the list of tests offered by my local Nuffield which is conveniently nearby. They also require a referral so you can either get one from your GP or ask them to do it on your behalf for an extra £25.00 - this suggests results are also relayed to the GP - if negative might not be an ideal scenario! I will check.

[wedgewood]

i didn’t experience that . It was 10 years ago . i suppose Nuffield hospitals all have their own procedures..

[OldmanD]

I had suffered various health problems since my 40s and had had lactose intolerance all my life which was ignored and in some ways denied possible by UK GP's. . . . .Hives by the 100s . . . I also had anaphylaxis to aspirin several times as teenager so it should have been obvious I had autoimmune disorders but my condition was allowed to get worse until I was put out or work in my early 50s. . . . . .My GP's were really nice people but lived in denial it seemed. . . ..Nothing new about GP's ignoring symptoms it seems