How to get accurate B12 reading?

Hi all,

About a year ago I was diagnosed with pernicious anemia by my hematologist due to very high parietal cell antibodies and at the time had a b12 reading of 210. I only take B12 orally and have for the past year. Now he seems totally uninterested and not concerned since my level is now 700 but symptoms still remain. Currently my level is 700 and folate was normal at 14. IF negative. I take 2000mcg of B12 spray daily. No folic acid. In the past (and usually) my folate levels are high in the upper 20s despite not taking folate. My gastroenterologist says I may have Atrophic Gastrtis but diagnosis pending. I feel absolutely fatigued and my limbs feel weak (I would never be able to hold my arms above my head longer than 5 seconds). Most importantly since all of this started I have constant lightheadness and was diagnosed with epilepsy shortly after (any clue if it could be related?!)

What I'm wondering is how long would I have to stop take B12 to get an accurate reading? I feel when I stop taking it for just a few days areas of my face start to feel tingly near my cheek and upper lip. I feel my doctor won't do anything if I keep having normal levels of B12. I've asked repeatedly for injections but they refuse.

I'd love to hear your thoughts or advice. Thanks so much!

Ashley

3 Replies

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  • Hi Ashley

    Sorry you are feeling so poorly, I am very confused probably you are you say you have been diagnosed with PA but your consultant Doctor and Heamatologist have not prescribed B12 injections.A diagnosis of PA means injections for life?

    Did your GP suggest oral B12 or was this your decision I imagine you must be feeling lost. I am not medically trained just someone who has been struggling like many others for a diagnosis and now Self Inject.

    You obviously have many questions to Un pack but my first thought would be to get the latest Guidelines for your GP from NICE and take them along to the surgery and ask why you have never had B12 injections despite being diagnosed with PA. Have you sought any advice from the pernicious anemia society as they are so helpful in these situations.

    I am sure there will be others here who can expand on your post.

    Mark

  • I thought it meant B12 injections for life as well. I have asked him about it twice now. I told him I didn't feel the oral supplementation was helping but he said to me "that the B12 would absorb in my body just the same whether I took injections or the supplements". I don't think that is completely true but I'm not sure. I figure if I have some absorption problem (I obviously do, B12, iron, vitamin d and zinc) that oral supplementation wouldn't work as well as injections. I will definitely print out those guidelines! Thank you for replying.

  • whilst high dose oral can be effective for some people it isn't always affective - it relies on passive absorption of B12 outside the ileum which averages 1% - for some it will be higher and for others it will be lower.

    If you are a member of the PAS please contact them. If you aren't then please consider joining and contacting them - they may be able to help with getting the correct treatment which, assuming you are in UK would be injections

    pernicious-anaemia-society....

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