Positive IFA, diagnosis not accepted by GP

[greenmug]

I was diagnosed with Pernicious Anaemia in 2018 but was not aware that I needed injections for it, so took oral supplements instead. I switched GP's a few years ago and asked for injections when I became aware that they were necessary.

The GP I spoke to did not accept that I have PA, because my labs were not current and there was no other evidence that I had either anaemia, or a B12 deficiency.

I was also told for them to consider a diagnosis of Pernicious Anaemia (apparently backed by a haematology resident consulted by this GP after our phone call) that I would need to have my B12, CBC and Intrinsic Factor Antibodies retested, because they could not rely on results from another GP surgery from 2018.

I had read the updated NICE guidance by that point, so understood that I should not be retested, and have been self treating. The only thing I did was send a copy of the original lab results to the surgery with a letter from PAS requesting that the diagnosis be added to my records.

I recently dowloaded the NHS app and can see that PA is still not listed in my health conditions, and that the GP I spoke with wrote that I although I understood their recommendation, I was unwilling to take their advice. There also appears to be some upset that I caused the phone consultation to go on for too long. They also stated that I was negative for Parietal Cell Antibodies, which is incorrect; PCA was positive. Additionally, they looked back through my records and found notes from an unrelated endoscopy, which stated that there were no unusual findings.

I can live with self treating, but am not sure how I should be monitored going forward. I would also be grateful for any other advice on potential issues that might arise from not having this diagnosis in my record.

[wedgewood]

As you have had a positive Intrinsic Factor Antibody test , that proves that you have P.A. As P.A.is incurable you need LIFE LONG treatment . No 2 ways about it . No retesting is called for .

Extremely neglectful that your original surgery didn’t give you life-long injections after your positive Intrinsic Factor Antibody test .

Sleepybunny knows how you proceed to make a complaint . ….

[greenmug in reply to wedgewood]

Thank you, I am glad that the new guidelines are so clear on testing and treatment.

I can't really fault the first surgery, I was in the middle of a move, extremely brain fogged, exhausted and distracted so did not respond to repeated vague requests to make an appointment to discuss. I was also annoyed by bossy receptionists and letters demanding I came in, without explaining why. I have a MH misdiagnosis from years of first untreated iron, then B12 deficiency, so I figured that was what they were harassing me about, and had had quite enough of that kind of "help" by that point.

Then I forgot all about it except to take oral supplements, lockdown etc, happened so I just put up with the growing list of new, and worsening old symptoms. They all seemed so unconnected and age related. I only ever had severe chronic pain that I thought was tendinitis, not the tingling extremities that are so widely reported as a neurological symptom either, so that sent me in the wrong direction too.

TBH, I did not even understand the seriousness of the diagnosis until last year when I went back through all my labs over the last 7 or 8 years and saw +IFA/+PCA/PA dx.

The new guidance had been published, and by that time I had switched to a bioavailable form of methylated sublingual b-complex so was finally compos mentis enough to read and retain it.

What a shock! And then another shock when I spoke to the GP and they acted like I was an overly entitled lunatic for asking for B12 injections.

[FlipperTD in reply to greenmug]

Just a thought, from a scientist, not a medic.

Going back in history, before B12 therapy was available, through the work of Minot, Murphy and Whipple, PA patients survived typically three years. Once oral therapy [liver!] was instituted, patients survived. If you've survived for at least eight years on oral therapy alone you may be one of the lucky ones where it can work despite IFAb, and don't actually need injections. No doubt injections would help you, but if you've worked out an oral therapy solution, do you really need to push this one?

I may have misunderstood you, and if so, I apologise. I accept that some on here might not agree with my logic above either. I'm pleased to see that you've recognised the 'bossy receptionists' but remember that the 'Dragon at The Gates of Doom' is there to make life as difficult as possible for us all, but I'm saddened that you've had to encounter them.

Whatever you do, keep smiling, as they really hate that.🙂

[helvella in reply to FlipperTD]

Could everything else in liver - I'm thinking primarily about the proteins but that could be a mistake - help with absorption of B12?

That is, maybe it protects the B12, releases it slowly, acts like a much lower-quality version of IF. Or some other effects.

Whereas a typical B12 supplement, often containing cellulose derivates, magnesium stearate, etc., actually reduce absorption.

[FlipperTD in reply to helvella]

Liver is a good source of folate too!

All the other stuff they add to tablets, simply to make them stable and possible to handle, does make you wonder, doesn't it? Magnesium stearate is actually a soap. [Yum yum]. No wonder we sometimes froth at the mouth. It's been used for many years for making tablets. [I should now go and wash my mouth out with soapy water.] Without using fillers for tablets, the actual size of the tablet would be truly microscopic. 1mg B12 tablets would then be 2,500 to the ounce. [approx.]

[helvella in reply to FlipperTD]

I like the point about folate.

I spend half my life trying to understand why the approx. seven different UK formulations of levothyroxine tablets affect individuals so differently.

I am lactose tolerant. I never avoid lactose in supplements, other medicines, foods, etc.

But I distinctly prefer lactose-free levothyroxine. (I've tried five lactose-free. Four were good. One substituted mannitol and was horrible.)

And a typical levothyroxine tablet is of the order of 999 parts excipients to one of levothyroxine.

Has there been any good research into excipients and bio-availability of B12 in oral forms?

[FlipperTD in reply to helvella]

I'm not sure but I wouldn't be surprised. I suspect [with no knowledge of the matter] that ease of formulation and minimising manufacturing costs, whilst maximising profit margins might drive it.

I met some folks who were working on how to make the wafers in KitKat chocolate biscuits out of cheaper flour! The normal stuff worked well; cheaper stuff clogged up the equipment, but they were convinced they could do it. I don't know where that went.

[helvella in reply to FlipperTD]

Chorleywood Baking Process was almost all about making it cheaper - and quicker. (And hang the consequences.)

[FlipperTD in reply to helvella]

It certainly was, and a great way to make soft fluffy white bread out of [comparatively] rubbish.

Sourdough for ever, as far as I'm concerned. I haven't met a sourdough loaf I didn't like. I despise the use of 'milk' in the name of 'oat milk' or other such concoctions, and likewise I'd support a ban on associating the word 'bread' with the Chorleywood process.

[FlipperTD in reply to helvella]

Thinking about it, when Minot & Murphy were treating folks with liver, they were responding, and that's years before Castle had 'discovered' intrinsic factor. Which does make me wonder how liver actually worked to treat PA, but it certainly did. But it's fascinating.

[Some of Minot & Murphy's patients may have had folate deficiency, as severe deficiency of either isn't fun.]

[Hockey_player in reply to FlipperTD]

The only problem with this: I managed OK for many years on just oral supplements. But I eventually reached a point where they were not working anymore. If they stop working here, it would help to have a PA diagnosis on record so that there are no struggles in getting injections.

[greenmug in reply to Hockey_player]

Agree. Too many nightmare situations that could possibly come up without it I think. "Sorry Mrs Greenmug, looks like you got the dementia, and your stomach cancer was caused by them dang UPFs" are what come immediately to mind. No thank you.

[greenmug in reply to FlipperTD]

Hey you keep smiling too😂. 👍. Thanks for weighing in.

[FlipperTD]

You're absolutely right!

[FlipperTD]

👍😁😂🙂

[Hedgeree]

Hi greenmug,

Apologies if I've misunderstood but if you have the positive IFA and PCA result on your medical records even if it was from a few years back that shows that you have P.A? So is the GP discounting positive results?

Are you in the UK?

[greenmug in reply to Hedgeree]

Hi sorry for the delay in responding. Yes, and the GP is disregarding the original positive Intrinsic Factor and Parietal Cell Antibody results. He told me that I would need both retested along with serum B12 and FBC to see if I’m anaemic. He said that they would test active B12, homocysteine and MMA too if I wanted.

[Hockey_player]

Some people with PA can manage with large doses of sublingual B12 (1000 mcg). I did OK with that for many years until it stopped working for me. I need injections now. Lots of people on this forum need injections.

[greenmug in reply to Hockey_player]

I had neurological symptoms so began self injecting every other day.