B12 blood test result

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After a diagnois of pernicious anaemia (pa)my wife has recieved b12 injections every 12 weeks for some years now. She has now been informed that a recent test shows she no longer requires the injections. The symptoms are still there including fatigue, light headness and dizziness. With the fatigue continuing to worsen. An appointment is arranged for next week with a GP. The gp will hopefully investigate the cause of my wife's symptoms. But how can pn go away once diagnoised? 

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  • Posted

    Once diagnosed injections are for life, even if they are given at the 3 month minimum, as stated in bnf. As far as im aware any blood test subsequent of injections will give a high(ish) reading and should not be used as a reliable result.

    you need to find out why they have decided to retract injections and ask for further tests to find out why she is still ill if that is the case.

    there are plenty of internet and high st places where you can buy b12 supplements to help if she feels it necessary.

     

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  • Posted

    Thanks for the reply lisahelen, yes my wife will ask the gp next week why the b12 injections have been stopped. We suspect the answer will be that the blood test indicated 'normal'. I also suspect telling a gp that 'normal' may be a result of prevoius injections will not positively further any discussions. As re supplements our understanding is that the b12 injections were needed because with PN the body cannot absorb b12 via diet. In our opinion the original diagnosis was wrong or the current assessment is wrong. 

    What are the b12 readings that indicate a problem with b12.

     

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  • Posted

    Testing for PA or even just good old bog standard b12d are not the most reliable of tests. Gps seem to tend to work by numbers on a blood result instead of by patient symptoms. Many people in the healthunlocked forum say that their levels are considered extremely high yet they are still very symptomatic.you could look there and also the pernicious anemea website for 'help' towards your 'case'. 

    I Would suggest making alist of all symptoms to take in and say that if its not PA, then can tests be done to find out exactly what is the cause. Thyroid, folate and ferritin are other blood tests also intrinsic factor and mma can help but many gps reluctant to give. Thyroid tests need to be more indepth than normal.

    You can ask for a copy of blood test results and it will show you the ranges which the ' numbers' are acceptable.

    Unfortunately its also not just a case of a b12 injection you also need other vits and minerals to make it all work properly from what i gather. Does she use any supplements?

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  • Posted

    Hi Alan it doesn't go away I truly think drs are not on top of this autoimmune disease. I have just had a rant at my Dr as I get my symptoms of fatigue dizziness pins and needles in my hands at 9 weeks but he won't give me my injection tillI get to 12 weeks which is stupid as I do believe the injection should be given before any symptoms start to reacur. Your wife will always have the symptoms if she had been diagnosed with pernious anemia if not treated it can lead to horrendous side effects and if left too long stomach cancer and neurological problems. Hope she gets sorted soon ☺
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