Diagnosis

Hi, everyone. Apologies for what is probably a usual post. I was diagnosed about three weeks ago and have had 6 loiafing doses. I'm confused as all I've been told by the nurse is my b12 was very low, how will I know if it PA? My second issue is my left leg. I had swelling to my left ankle and foot which led to bloods and diagnosis. The swelling to the foot has reduced somewhat but not completely and now I can see swelling from the knee downwards with a 1cm difference between legs. I don't know whether to be concerned or what to do about. The psychological effect of how I look is the worst x

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  • To find out if your B12 deficiency is Pernicious Anaemia, you need a blood test which can detect the presence of anti-bodies which destroy your Intrinsic Factor.(the I.F. is what enables you to to absorb B12) Even if you don't have those antibodies , it doesn't rule out P.A. As for the swelling you have ----I don't know. It may not be connected with your B12 deficiency. Best of luck to you.

  • Thanks. When should I ask to be tested - do I wait for the three months?

  • No, don't wait 3 months, get it as soon as possible. It is very important. You shouldnt need to ask really. I actually went to a private hospital to get it,although I couldn't really afford it. It cost £75. I took the result to my N.H.S. GP. and she now acknowledges that I have P.A. It means life-long B12 injections. Get tested(I don't know the medical name for the test.) Please do it!

  • I will do my best, thank you, finally I am getting answers x

  • In some areas you can get the tests done through GP but you will need to talk to them - the specific ones are IFA (Intrinsic Factor Antibodies) and PCA (Parietal Cell Antibodies) ... I think.

    In terms of properly monitoring B12 levels tests for Active B12 are more efficient than whole B12 tests (done as standards and picks up all forms of B12 in serum, whereas it comes in lots of different forms only one of which is active in promoting healthy cell production).

    Believe you can get the tests done at Guys Hospital in London. If you go back through posts over the last few months then you will find references that have been given to other members of the forum.

    There is also a face-book group for PA that I'm told is quite good but just can't bring myself to get involved in facebook - that has been mentioned in posts in the last month or so as well.

  • I to have found everything very confusing.

    PA occurs when something goes wrong that means that you are no longer able to absorb B12 through the ileum - most common causes are a) antibodies destroying intrinsic factor (which I think of as being a binding agent that allows the B12 to be absorbed by specific cells in the ileum - called parietal cells) b) not having parietal cells that can absorb the B12 because you are producing anti-bodies that are destroying your parietal cells. c) gastric surgery that has removed the relevant cells - though there is some debate about whether c) actually counts as PA which is generally thought of as being an auto-immune problem (ie the production of anti-bodies).

    GPs have a lot of misconceptions about what it is - some seem to think that if you don't have deformed red blood cells then you don't have PA. The real problem is the B12 deficiency that comes with not being able to absorb B12.

    There are tests that can be done for the antibodies but these can give false positives.

    B12 deficiency can also be caused by lack of B12 in your diet (comes from animal products and fish and dairy seem to provide the most easily digestible forms). Most breakfast cereals are fortified with B12. If it relates purely to your diet then it isn't PA and can be corrected by taking supplements orally.

    If you have PA then this route isn't open to you. The general treatment is injections but some people find they can absorb B12 in other ways - eg use of skin patches, sublingual tablets. I personally use a nasal spray which is a moderately expensive option but it works for me - didn't get much joy from GP so 'going it alone' as much as I can and that has worked for me as well (not that keen on GPs for lots of reasons over a long period of time).

    I've not come across - or haven't noticed - mention of swelling as a symptom of B12 deficiency so can't really comment on that. However, you should be aware that many people who have one auto-immune problem also have and develop other auto-immune problems so treatment can be quite complex and it may be that the symptoms you are experiencing aren't directly associated with the B12. If you can try talking to you GP and ask them to explain to you properly what is going on. You might also find it useful to get hold of copies of blood-test results.

    Fingers crossed you have a GP who will listen and explain to you.

  • Thank you. Feeling better about things with all this insight x

  • Lots of people recommend 'Could it be B12?' as a book on the subject if you are trying to understand it.

    I haven't read it but have read couple of books produced by the PAS - unfortunately the site doesn't seem to be working properly but they are available via Amazon

    amazon.co.uk/Pernicious-Ana...

  • I'm reading one at the moment

  • All the advice given before this is really comprehensive but Im concerned about you swollen leg. If you haven't already and there is still swelling go and see your GP it is a sign that something is not quite right..

    If it does turn out you have PA it's important that you get regular and sufficient injections of B12 .

    The standard dose is every 3 months and too many GPs just stick to this , some people need more frequent ones. Always get copies of you blood results

  • Thanks for that, can't get gp appointment till the 11th

  • Dear Cheryl 1662291

    The first point I would raise with you is your leg, if this is swollen and there is any pain or discolouration then I strongly suggest that you get yourself straight to A&E, this could be simply Odema or it could even be a DVT, but you need to have it seen asap. if it is a DVT you may need to have anticoagulant treatment.

    Self or too earlier admin is not a good idea prior to being fully tested. Once you have taken B12, you should then leave a period of at least 3 months without taking any B12 prior to testing, otherwise your results will not provide a true natural body level reading, they will show a medicated reading. SORRY!! but that's the way things are at present.

    If you wish to find out if you are B12 deficient or indeed have P.A., then there are procedures to follow, if you are wise. First attend your GP and ask him to carry out his standard and almost useless B12 Serum level test, which in your medicated state, is almost certain to be normal in your GP's eye's. Of course he may not be aware, that you can indeed be B12 deficient, with any Serum level reading. This should then be followed by a test for Intrinsic Factor and Parietal cell Antibodies, all of these tests are available free on the NHS. These tests will highlight your ability or inability to absorb B12 via your gut and hence your diet / oral admin route. Whilst on the same visit, you could request your GP's backing, in order to obtain blood samples for HoloTC testing and if needs be, MMA levels. As you may be deficient in a number of other areas, then you should also in my opinion, consider a test for Serum Folate, RBC Folate and in your case due to your leg possibilities, a Homocysteine test, which will further indicate both your B12 and Folate status, plus it should be checked because of Factor V Leiden disorder, which can increase the risk of Venous Thrombosis. Plus a test for your Ferritin, Thyroid, along with a full standard test for FBC, Urea/Elec's, LFT's, Glucose and Bone Profiles.

    Advice on HoloTC, MMA and Homocysteine testing can be sort from Guy's / St. Thomas's Hospital in London and tests can be completed by post. You could contact Denise O'blein on 0207 188 7188, Denise will outline the procedures for arranging tests by post, you will also be able to E-mail her all your medical questions and she will then run them past the Consultants and experts in the field, answering them all by return of E-mail, which you will be able to refer to in the future, perhaps with your GP.

    Hope all this helps and you soon have the answers you seek.

    Best wishes B12T

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