Pernicious Anaemia Society

I need help

Got my reults on monday,my b12,vit d and folic acid are very low,B12 being 145,dr put me on tablets and wont put me on jabs unless intrinsic factor comes back positive ! Up to 3 weeks wait,i cant cope much longer he wont start jabs,its not my diet,i have all the symptoms even down to an unnecessary carpel tunnel opp,thankfully avoided other hand being done due to finding blood results bad,dr never there wont be able to see another one till monday :-( driving me mad,i feel like pooh

10 Replies

Really sorry to hear that your GP is such a pain in relation to your B12 levels and starting you on shots.

It is true that small amounts of B12 are absorbed 'passively' in your gut - about 1% so sometimes you can get a bit to keep you going by flooding the system with B12 orally but that isn't going to sort out your deficiency.

Going to have a look and see what info I can find that you could take to your GP to make him realise that PA isn't the only cause of malabsorption and will come back to you.

Will also see if I can find something on just how inaccurate the IF test is ... though others may be able to lay there hands on that more easily.


Look up BCSH guidelines on B12 deficiency. All the answers are there. Take to your GP. Recommends treating if B12 below 200ng/l and recognises intrinsic factor is only positive in 50-60% cases and if there is symptomatic improvement on a trial B12 then continue. Treat on basis of symptoms not blood level or IF result. Also google BMJ B12 deficiency review Hunt September 2014. If you have symptoms and that result you need treatment. Do you have anaemia? You don't need to as 30% don't. Many GPs don't recognise that. Be firm. Get the facts. Go with the papers and family /friend and I think it is unlikely GP will refuse. Hope you are also on folic acid and vit D tablets. A good bit B complex is also recommended. Good luck



NICE guidelines summary

list the following possible causes.

Pernicious anaemia (an autoimmune disorder which results in reduced production of intrinsic factor) is the most common cause of vitamin B12 deficiency in the UK. Other causes of vitamin B12 deficiency are rare, but include:

Gastric causes (e.g. gastrectomy, gastric resection).

Inadequate dietary intake of vitamin B12 (e.g. vegan diet).

Intestinal causes (e.g. malabsorption, ileal resection, Crohn's disease).

Drugs (e.g. colchicine, neomycin, metformin, anticonvulsants).

To be honest I think the guidance is probably wrong and other causes probably aren't as rare as it claims but at least it does say that there could be other causes so testing for IF shouldn't be your only recourse


NICE guidelines on Assessment

Under basis for recommendation it states

Anti-intrinsic factor antibody is extremely specific for pernicious anaemia, with a high positive predictive value of 95%, but a low sensitivity of 40–60%. This means that about half of people with pernicious anaemia will have anti-intrinsic factor antibody [Andres et al, 2004; Longmore et al, 2007]. If anti-intrinsic factor antibody is present, pernicious anaemia is very likely, but its absence does not rule out a diagnosis of pernicious anaemia [Devalia et al, 2014].

So, that's a good bit of evidence that the test results are pretty useless if on50% of those that do have the anti-body show a positive result.

On the site the bits in square brackets provide links to the relevant studies


BCSH Guidelines

p10 Recommendations at the top

Patients negative for intrinsic factor antibody, with no other causes of deficiency, may still have pernicious anaemia and should be treated as anti-intrinsic factor antibody negative pernicious anaemia. Lifelong therapy should be continued in the presence of an objective clinical response.

(Grade 2A)

Again good evidence that the IFA test is a poor guide as to whether you have Pernicious Anaemia

Hope this helps a bit


Thank you for all the info,I've been making my way through it slowly,just so much to take in :-(

Yes I'm on vit d and folic acid tablets as well,my vit d was 36 :-(


My folate is 3.6 :-(


One very important factor that you should go back to your GP about is that taking folic acid alone in the presence of B12 deficiency without taking B12 can precipitate subacute combined cord degeneration. If you aren't able to absorb B12 from tablets which won't be high enough dosage on NHS anyway to correct deficiency this puts you at risk. You need injections. IMHO


look on line for Guidelines for diagnosis and treatment of cobalamin and folate disorders, print it off and take it to your doctor. Highlight the piece about intrinsic factor and how this can be negative even though you have pernious anaemia! It give the doctor instructions on how to treat B12 deficiency. Hope this helps


It is nothing less than shocking that you are being left to wait so long for a test which is considered by most up to date guidelines as being unreliable. Therefore, the most relevant point from the summary of BCSH guidelines ( link already given above) is:

"In the presence of discordance between the test result and strong clinical features of deficiency, TREATMENT SHOULD NOT BE DELAYED to avoid neurological impairment."

If you cannot change your GP, take someone with you to underline and back you up in asking for urgent reatment with B12 injections as defined above.

Thyroid, Vit.12 and Vit. D deficiencies are often interlinked and I'm wondering if your GP has given enough vitamin D3 to be effective. I found the following helpful.

Richard Shames, MD: " This particular vitamin is so crucial to thyroid function that its status has now been elevated by researchers to co-hormone. We now know that the variability of thyroid to work or not work in your body is dependent upon the presence of Vitamin D, making it not just of benefit, but absolutely essential."

" Thyroid treatment isn't optimal -- and may not work -- if you do not have adequate Vitamin D for the crucial final metabolic step, which takes place at the site where thyroid hormone actually works. This happens inside the nucleus of the cell. Vitamin D needs to be present at sufficient levels in the cell in order for the thyroid hormone to actually affect that cell. That is why vitamin D is so crucial."

I also found supplementing with Sea Buckthorn capsules and optimal thyroid treatment cured carpel tunnel problem.

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A biochemist told me that 30% of people with PA will test negative for the IF. Go back to a different doctor and tell them this and ask for injections again.


More info for GP :

"we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 500 pg/ml " - from the book, "Could it be B12?".

You are already below the minimum 200 pg/ml !

This summary from the latest BMJ - A.A. Hunt research document might also help:

* Vitamin B12 deficiency is a common but serious condition

* Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

* There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

* There is evidence that new techniques, such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

* If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay. "


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