B12 Deficiency

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Hi all ,

I was diagnosed last September with low B12 , it was 96 ngl. I had my 6 loading doses and for the first time in years I felt great. Unfortunately it only last 10 days or so

I had my dose in December and not due my next until the end of march. I'm extremely tired , sleeping upto 19 hours a day most days. My hair is thinning , ive got dry.flaky skin patches on my face. And I'm back to forgetting simple words when I'm trying to explain things.

Ive tried talking to my doctor but he insists b12 must not be given any less than 3 months. I'm at a loss at what to do , I'm 38 , I have issues with walking due to pain and a tremor in my left arm when I reach out. Ive slept away several years and really don't want to sleep anymore away.

Any ideas would be fab on how to get back to the world of living. And ive piled on weight also which I want to lose but cant because of pain and sleeping. I am on 87mg of fentanyl also for pain

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4 Replies

  • Posted

    Forgot to mention folate was 2.3 ngl. I was given 4 weeks of 5mg folate and told that was plenty as it wasn't low
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  • Posted

    Hi Lorraine, so sorry to hear how bad you're feeling, I sympathise completely. How on earth do we get GP's to listen, it's like hitting your head on a brick wall? One of the first things I'll say is if your B12 is low, then probably most other vitamins are too. So to begin with take a really good multivitamin every day. Your folate sounds too low as well, I've recently had a blood test, and the range shown on mine was from 4.0 to 20.0. It does depend on the lab doing the tests though. I belong to the Pernicious Anaemia Society, and there is a very good book called "Pernicious Anaemia, The Forgotten Disease" by Martyn Hooper ( founder of Pernicious Anaemia Society). It covers all reasons for low B12, and he starts by explaining his own experiences
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    • Posted

      Sorry, pressed send by mistake!  There is also another site called Health Unlocked where you can ask other sufferers for advice. The other thing I would say is supplements of B12 are available, patches, sprays  for under the tongue or nose. These will help boost your levels. It is also a good idea to ask for printouts of your blood test results, so you can monitor things yourself. I've just done this, from my test last week, and discovered my folate is too high. Will be asking advice myself on the other site. I think it means my body isn't using it to absorb the B12. Oh well, really hope things start to improve for you Lorraine. All good wishes Marion 
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  • Posted

    hi Lorraine. marion has covered the important information in respect of the other vitamins, low folate & the adjunctive b12 products/modes of supplementation etc.

    i'd add, to have a look at the on-line NICE guidelines on diagnosis/treatment of b12. on Pg 6 of that document, have a look at the management section where it outlines protocols for b12 neurological symptoms. i suggest taking this document with u on ur next GP appoinment. hopefully, they'll refer you onto a Consultant - a Heamotologist or ask for a referral.

    i'd also strongly suggest, you have an up-to-date thyroid function screen completed. that is, Thyroid Stimulating Hormone (TSH) together with a T3 & T4 screen. a Coeliac disease test & Vitamin D test should also be completed. many of these conditions have 'overlap' symptom pictures. if any of the above are low, they add to the existing stress on the body, prevent or/and slow down recovery. they need to be ruled out.

    unfortunately, GP's can be busy ppl and need nudging in the appropraite directions sometimes. if u ask for a referral, they'll be obliged to do all the other tests to rule out other causes of your symptoms.

    all good luck

    . Caitlin

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