Advice Please - B12 Deficiency not Pernicious Anaemia

I was diagnosed with a B12 deficiency back in 2013 (after being very ill) and was put on to injections, even though I tested negative for pa. I continued on these injections until I moved to my new doctors in October 2015, where they re-tested me for pa. When this came back as negative they told me i no longer needed the injections. My B12 level has dropped by over 500ng/l in 5 months and I am once again deficient in folate again. Yet my doctors still don't believe I need the injections. My doctor has given me a months supply on oral B12 (cyanocobalamin 50mg twice a day) and a repeat blood test to check my levels afterwards, as I feel my symptoms are resurfacing. 

However my doctor made me feel very much like a hypochondriac and that I was wasting her time. So I am really asking what people would do in my situation? Would you take the tablets, even though my deficiency has not been proven to be dietary related? I am considering writing to my doctor and providing some of the research i have found, as she has a very set mind frame on the topic. I've seen that others have purchased their own B12 and begun self injecting...?

Feeling very drained at having to keep fighting with my doctor over this and I see sadly that a lot of people have gone through it - so what would be your advice!?

Thanks in advance!! 

4 Replies

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  • Your GP sounds like one of the many who hasn't really got a clue what PA and B12 deficiency are.

    The PA tests are at best 50% accurate so getting a negative doesn't mean you don't have PA

    PA is only one absorption problem that can lead to a B12 deficiency.  Others include:

    a) gastric surgery affecting the ileum

    b) lowering levels of stomach acidity - which tends to get worse as you get older

    c) genetic abnormalities affecting the ileum

    d) a whole raft of drug interactions - including many drugs used to treat symptoms that are early indicators of a B12 deficiency - or an absorption problem that will lead to deficiency

    If you have an absorption problem then you are no longer able to store and recycle B12 - as the release mechanism involves the liver releasing B12 back into the ileum in bile where it can no longer be absorbed so it will just pass out fo the body.  It may take time but you will eventually just become deficient.

    The serum B12 test is not an accurate guide to what is happening.  It only looks at what is happening in your blood - and says nothing about whether you are managing to fully process the B12, and get it to the cells that actually need it.  B12 deficiency is NOT a blood disorder, though blood disorders are among its effects.

    The symptoms of PA are the symptoms of B12 deficiency caused by it.

    You could play the game - take the tablets for a month and then not be surprised when the blood tests still come back low.

    You could also try keeping a food diary to prove that you are getting enough B12 in your diet so it can't be that.

    If your GP is willing to educate himself then this site may be of use

    pernicious-anaemia-society....

    Not sure where you are based but the following may also be of use

    BCSH guidelines for treating B12 deficiency - refers to testing not being useful unless there is a suspicion that levels are remaining low and also clear that treatment is for life

    bcshguidelines.com/document...

    UKNEQAS alert to limitations of serum B12 - cannot use the figures on their own - need to look at symptoms

    ukneqas-haematinics.org.uk/...

    If you took all the tablets you have been given as a daily dose its possible that you might manage to get enough B12 through passive absorption (1% of B12 is absorbed outside the ileum).  

    You could try looking for another GP

    You could try treating yourself - although injectable B12 is prescription only in a lot of countries - other forms are just vitamin supplements - and they do work for some people - trying to use membranes outside the gut - eg sublingual tablets and sprays, nasal sprays and skin patches.  Even if you can't get injectable B12 locally without prescription there is usually legislation in place that allows you to import medications that you need but can't source locally - which is used by most of us in the UK who inject ourselves.

  • I would consider changing GP. You are not long there and don't need to give a reason. Take material from the PAS to the next one. You can look up their specialisms and one may have an interest in these things. Good luck x

  • Hi Astro_Candy,

    Welcome to this community.

    I'm not a medically qualified person so I'm a bit confused by your statements "and I am once again deficient in folate" going on to say "even though my deficiency has not been proven to be dietary related?".

    Gambit62 has listed a whole lot of reasons why you may be b12 deficient but if you don't fit any of those criteria then maybe it is down to your diet.

    B12 is only naturally available in foods like red meat, fish, poultry, eggs and dairy products but together with these you also need plenty of folate as the b12 and b9 work hand in hand.

    Folate is found naturally in a wide variety of foods, including vegetables (especially dark green leafy vegetables), fruits and fruit juices, nuts, beans, peas, dairy products, poultry and meat, eggs, seafood, and grains. Spinach, liver, yeast, asparagus, and Brussels sprouts are among the foods with the highest levels of folate.

    If you do decide to take the b12 cyanocobalamin tablets your doctor has prescribed you really must at the same time get your folate levels up.

    I wish you well for the future.

  • Hi,

    The BCSH Cobalamin and Folate guidelines, that Gambit gave  a link to, mention that people can have Antibody Negative PA on page 29 and elsewhere in document.

    I gave a copy of this document and a copy of Martyn Hooper's latest book to my GPs.

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    B12 Deficiency Causes

    b12deficiency.info/what-are...

    The UK NEQAS, BCSH Cobalamin document and this BMJ article bmj.com/content/349/bmj.g5226 make it clear that people who are symptomatic for B12 deficiency should be treated even if B12 blood levels are normal range,

    Fbirder has useful summary of mainly UK B12 documents. if you search for his posts or pm him I'm sure you will find a link. I plan to give  a copy to my GPs at next appt.

    PAS

    Have you spoken to the PAS (Pernicious Anaemia Society)? They are helpful, sympathetic and should be able to point you to useful info and may know something about Antibody Negative PA. In some cases they can intervene on behalf of members. Lifetime membership costs £20.

    pernicious-anaemia-society.... 01656 769 717

    Other UK B12 websites

    b12d.org

    martynhooper.com/

    b12deficiency.info/

    The person who runs this site is also very helpful to talk to. Contact details on website.

    "what people would do in my situation"

    Not sure I can answer that but in my situation after many years of trying to get treatment from NHS and being highly symptomatic for B12 deficiency I chose to self treat.

    Unhappy with treatment?

    b12deficiency.info/b12-writ...

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