Pernicious Anaemia misdiagnosis

Hi i was diagnosed with PA at the age of 5. Ive been on iron, folic acid and vit B12 injections on and off since then. Ive been going down hill for the last 15 yrs only on folic acid and ferrous fumarate as the GP's kept saying that my pernicious anaemia had gone. I have been having so many worsening neaurological problems, falling over, shaking, poor concentration so bad now i can fill in forms and remember words or know what day it is most of the time! IIm repeating things over and over in conversations. I feel like a dementia patient.

I am like a recluse as my temper is out of control but i dont know why. I feel that if i go out people will think im losing the plot and call the men in white coats!

I used to be the life and soul of the party. My hair is falling out in handfulls. I am yet again anaemic on ferrous fumarate and folic acid. Am i ok to insist on the GP doing tests for Pernicous anaemia again cos i now understand that when you have it its with you for life??????

11 Replies

  • Is change GP. You obviously have PA and it never goes away. Your GP is putting your life at risk!

  • Get yourself another GP and quick!

    You shouldn't have to put up with it and as Ukangell said, your doctor is putting your life at risk!

    Have you got any family or friends that can go with you to the doctors, for support?

    Don't let them fob you off anymore!

    Please let me know how you get on.

    Good luck :) x

  • Auto-immune illnesses never leave us - some may go into remission - but always need to be supported but PA needs constant support. Just indicates how little Docs know - sadly :-( Hope you can soon find a Doc who will help. Could you buy B12 injections on-line or take Jarrow Methylcobalamin 1000mcg x 2 under the tongue until you can see a Doc. It will of course skew your results but I think it better you treat yourself in the interim....

    The above link demonstrates the guidelines and specifically mentione that clinical signs shouls be observed....

    Had my Terminal Ileum removed over 40 years ago - but Docs forgot to tell me that I may have a problem with absorbing B12 :-( Many a GP has seen my notes over the years - still nothing happened....

    Hope you soon feel better....

  • I am so sorry to hear about this. If you have been diagnosed as having PA then that means that you have anti-bodies that prevent your body from absorbing B12 and they don't go away so I am really at a loss to see how your GP could have told you that your PA had gone away - it never does and you do need to have shots of B12 for life. Your anaemia may have gone but that isn't what PA is - anaemia is a symptom of PA.

    I would definitely go back to the doctor - assuming that your GP has changed to one that is going to listen - point out that you were diagnosed as having PA when you were 5 and that means that you haven't been able to absorb B12 which has resulted in all the symptoms you are experiencing and ask them to ensure that you receive loading shots immediately. As you have neurological symptoms you should have shots every other day until the symptoms stop improving and then be moved to shots every 2 months, if you are treated in accordance with the NICE guidelines.

    When you feel better I would also seriously consider complaining about the treatment you have received as I believe it has been negligent and far bellow the standards that would be expected of any GP - but given that you are feeling so rotten the focus now must be getting better.

  • I agree with all the comments above, find a new doctor quickly it is disgusting neglect.

  • I agree with all of the above. Good luck to you my dear x

  • You need to get these B12 shots into you, soon.

    I hope you have a new GP, because by going back to the old one, you will just get the same treatment again, so why bother.

    You say that you are taking folic acid, I would probably stop taking this, because, if they are going to put you through a battery of blood tests, the folic acid can hide B12 deficiency.

    I hope, by having a new GP, things will work out better for you.

    This new GP, will see the light, and will wonder why, your PA and lack of B12 injections have ignored.

    I know, when you are feeling so yuk, it takes a lot of strength to be strong, so that you can put your concerns across, firmly.

    But bowlerc67, you will be the life and soul of the party again, but first sort your NEW GP out, and insist

    that you have your B12 shots, and remind him that these are for life.

    Let us know how you get on..

  • I see no reason to stop taking folic acid. A high folate can mask some symptoms of B12 deficiency but I don't believe it has any effect on B12 level in a blood test.

    As others have said, you need a new doctor and B12 injections.

  • Yes, think this is right - from what I have read high folate may counteract the effect of B12 in enlarging red blood cells so it masks a symptom rather than actually affecting the level of B12.

    Alternatively the fact that B9 is needed to support the metabolism of B12 could result in B12 levels becoming even more depressed but I think this is something that happens outside of absorption through the gut (which won't be very efficient anyway in someone who has PA) so might affect active B12 but certainly shouldn't affect the whole serum B12 results.

  • Have you had recent b12 levels checked? I only ask because you could use this to convince your GP that you are deficient.

    I don't see that you are saying you have a new GP, but if you don't, you need one. And you need one quickly. If you are b12 deficient (and I don't mean just identifiable through blood tests but 'functionally' deficient, and you are receiving folate, this actually causes more harm than good.

    The problem will also arise that even when you get treatment it won't be enough. Various debates aside it is well known that the UK has one of the worst treatment protocols in the world - small wonder that people remain symptomatic after 'treatment.'

    You risk permanent neurological damage by waiting for the doctors to give you treatment - the alternative is to self medicate but that will normalise all your blood test results.

    Any damage you are sustaining at the moment can be permanent - no matter if later your b12 levels are in the normal range. Neurological and cellular damage is not reversed simply by putting blood levels right.

    You have horrible choices to make - but at least you have choices.

    Either way, get a new GP.

    ... and prepare yourself for the fact that if you are left with remaining symptoms even after treatment, no one will recognise the fact you have been permanently injured.

  • Thank you everyone, I have recently changed from that old GP to a younger one. He is the one that has sent me to the hospital to investigate why I keep being anaemic. I've had a barium enema and last week endoscopy to take biopsies of my duodenum. I am making an urgent appointment with my GP tomorrow. to discuss the B12 blood levels and to put him straight about my Pernicious Anaemia status. I hope that I get the result needed or I will have to get my mum involved as she was the one who was given the diagnosis when I was a kiddie. I will post updates. Thank you again

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