For the last 3 years, I've had increasing numbness and burning pins and needles, headaches, fatigue, brain fog, and have been shedding weight.
My GP has had me tested for MS (MRI scan says "no") and Neurology have diagnosed "funtional neurological disorder - FND".
I then researched FND, and it was there that many said they had also had same diagnosis, but turned out they had pernicious anemia, and then explained the difficulties of getting a GP to prescribe B12 jabs, which I've also had (that did bloods and my b12 shows as normal, the GP admits the NHS test is flawed).
I then found Health Unlocked, and yourselves, and through these forums ways to get and self administer my own B12 jabs.
My question is: my GP rung me up, six weeks after the bloods were done, and now that I've been self administering tests, to say she forgot to order an "intrinsic test".
When I looked this up, its clear that these tests should be done BEFORE b12 treatment or the results will be inaccurate (ie because I have enough b12 due to supplements).
I now have to stop self treatment, which is going to make me feel awful, and then start the process of rebuilding my levels again , and very probably have a false "all clear" again, and be refused treatment by GP, meaning I have to pay for the B12, which is is an extra expense I could do without.
Has anyone had an intrinsic test done after starting treatment, or advice on how long vita B12 stays in your body, so I can "detox" for the test, so I can get it done with accuracy?
Many thanks x
Written by
Sean2310
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There is a helpline number that PAS members can ring.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, more UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Yes, I am in the UK. Thank you, I really appreciate all this info and your pointers, it's so frustrating that only by getting this kind of info, that I can show my GP and get things done, grudginly because shes annoyed I challenge her expertise 🙄 x
With IFAB test you just need to avoid doing the test too close to an injection as this leads to false positives. Exactly how long you need to leave it depends on the exact test method and varies, as Sleepybunny says from 48 hours to 10-14 days. If you don't already know from the lap what they recommend then err on the cautious side.
Please note that IF isn't a very sensitive test so gives false negatives 40-60% of the time - depending on the exact methodology used, so a negative doesn't rule out PA.
If the treatment is working then you might want to run with that.
Knowing if you have PA is useful because it has a known risk for NETS (precancerous cells that aren't harmful but can become cancerous) so you can be monitored. It doesn't affect the treatment though.
There is another more sensitive test for PA - gastrin - but it isn't available on the NHS - certainly not from GPs.
I had a test for Pariatel antibodies, IFA and MMA the day after an injection . Parietal came back none detected IFA came back negative my previous I F test came back none detected. This test was before I started every other day. I was told I don’t make intrinsic factor that’s why none was detected. Hence I had autoimmune pernicious anaemia.
The test method makes it difficult to fully distinguish IFAB from other metabolites with the result that there is a range on the test that is deemed to be negative, ie the background noise you might expect in someone with no IFAB. This is different from not producing IFAB and it is part of the reason why it is so prone to false negatives.
I’ve just been referred to a haematologist as my neurologist discovered I have MGUS Monoclonal Gammopathies of Undetermined Significance. Which can be caused by pernicious anemia, when the blood cells are the wrong size and shape I believe. I have to many of one specific antibody. Mine is the IgG one.
To be clear - its an increase in a very small risk. I'm not sure whether NICE guidelines mention monitoring or not. There are countries where monitoring is recommended in standards and there are individuals in the UK who are monitored.
I had an intrinsic Factor Antibodies test when I was taking sub-lingual B12 by the shed -load .I hadn’t found the PAS then , and didn’t know about the rule .
But never-the -less I tested positive !!!! ( much to the chagrin of my GP who had said that there was nothing wrong with me inspite of many B12 deficiency symptoms )
But I read now that you need to have not been supplementing for at least 2weeks . before taking the test .
We also know now that about 50% of PA patients test negative . But many doctors do not know this . ……..
But I would be inclined to stop supplementing, otherwise you would blame supplementing on a negative result.
But we know that SYMPTOMS should be treated , not blood test results !
I agree. My symptoms are an exact match. I've also asked for nerve (peripheral nerve testing that won't be picked up on MRI - have been refused.
I will stop dosing, but I can't help being upset as this could and should have been done at the initial phase - now I've got to deal with severe symptoms for 2 weeks in the hopes of an accurate test.
Yes , having to fight like hell when you are feeling so very unwell is OUTRAGEOUS . I now self-inject weekly because that is what helps me . Once every three months was useless to me. Was told that my self injecting was TOXIC !!! And my NHS injection is now not allowed ! The ignorance is shocking . Yet our health is in the hands of such people ! Just think what life is like for B12 deficient patients who have no access to the internet or PAS ! Horrendous !
So sorry to hear this -- almost exactly the same things have happened to me that you describe. I had 6 loading doses in 2016 and none since from the NHS (despite severe endoneuropathy). Did have a neuro referral but that was >5 years ago - neurologist was very well informed and confirmed that in her view I was quite a bad case of PA, but I don't know what the point of that referral was as no treatment resulted and I'm not being moitored. When I explained recently about false negatives the smug little GP said "they wouldn't use the test in the NHS if that were true". Eejit. And he is the practice's specialist in neurological conditions. It makes me so mad, especially when I think of the people who can't research it themselves or don't know what to look for.
The fight IS exhausting, at a time when you feel tired and weak... there are advantages to just reading a lot (here) and self-treatment. I have given up on the arrogant, ignorant GP (despite neurologist confirming the level of deficiency I had must be PA, and the impact of loading doses being described as 'miraculous' by previous GP). I just inject myself weekly, take folate and vit D every day. But it worries me and every time I get new unexplained issues I worry that either it is B12D related or there is something else wrong with me that goes undiagnosed. Maybe the fact it was missed for over 10 years makes me a bit nervous that the same will happen again... it's a rotten situation you're in. Maybe discuss with your GP and explain both the unreliabiliy of the test and the reasons you are reluctant to stop dosing.
Thanks Mashie. Yep, we are absolutely left out to sea by the NHS.
I have spoken to my GP. The issue is she's clueless about B12, I've even showed her the NHS own advice on it, and the accuracy of tests. But she is sooooo focused on Nice Guidelines.
My symptoms are in line EXACTLY with PA & peripheral neuropathy, not FND. But the neuro & GP just won't do the nerve electrodes (they say MRI is enough, but it *does not* pick up peripheral issues - they either dont care or am tired of me questioning them) .. so I'm going to pay for the Gastrin test & neuro myself, because I need to know the answers as to what's wrong.
But yeah, I'm done with these people, I feel for them and their workload, but honestly, I read forums like this, & other groups and where I can, I just do the treatment like B12 myself, because the argument (me vs their medical expertise) is not worth it, and it's just less stressful.
Why we can't just gave OTC B12 like everywhere but the USA pretty much I don't know.
If anything else goes wrong, then yeah, I don't want to think about it, the waiting lists or that I've no more money to privately treat anything else.
Take care Mashie & keep as warm (the cold is getting to me) as poss :))
You take care as well. If she is focused on Nice Guidleines then if you're lucky you can persuade her to maintain frequent doses until there is no more improvement in neuro symptoms. The guidelines say whatever the IF result, if there are neuro symptoms you inject regularly until neuro symptoms stop improving. For me that took about 2 years of SI... You will find the details somewhere on this site. I tried to do this but GP just laughed at me... hugs.
I would have had no idea if it hadn't been for a neuro telling me I have "functional neurological disorder" which is basically a rubbish diagnosis given when they can't explain what's wrong imo. So I joined a Facebook group, and someone there posted: vitamen b12. Everything fell into place.
I asked for the b12 test (was warned its inaccurate, so to ask for instrinsic factor for PA as well. I went for the test, b12 was "fine" iron slightly low, vit d slightly low, significant weightless a concern, but nothing GP regarded as "noteworthy dangerous" and she said she'd wait for intrinsic which takes time.
Then rung to day intrinsic not done, need to do AGAIN.
She's not even taking account of the symptoms. It's like I'm lying 😔.
So aside from having to cold turkey and suffering (I need 2 doses a week - I use Pascoe 1500, following loading doses), it's that it's money down the drain for me and weeks of building up to a point I'm feeling a noticeable change, but still experience tinling and burning sensations, all wasted.
It's disgusting that with so much info out there, GPs just don't get it, or care.
It's also shameful tha your NHS injection not allowed? B12 is absolutely not toxic,and as understand it, everyone's need is different.
Before I found your site and verstapo.de I was getting shots at a high street salon (£45 per shot) which is legal?
I genuinely fear for us, and agree, if you haven't found out about this on your own, you're stuffed.
It's Winter and it's hard now, so do take extra good care of yourself okay? X
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The difference between intrinsic factor antibody test and MMA
Changing result for intrinsic factor antibody blood test
Intrinsic factor test
Testing Intrinsic Factor and others
