B12 advice please

Hi I am new to this site and after some information/advice.

I have been extremely exhausted for over a year and my symptoms have got worse, to the point were I am off work at present. I feel weak, limbs ache, pins and needles especially on a night in feet, like a burning fuzzy sensation. I get out of breath walking upstairs, constantly feel weak, ringing in ears. The list could go on. I've had numerous blood tests and for the vitamin b12 always got that it was in normal range from the GP, it did come back that my vit D was severely low at 6 and was given loading dose for that and I have to be re-tested next week, however I haven't had much improvement in my symptoms and now they are looking at chronic fatigue syndrome, however I recently got some private bloods done to look at thyroid and the also tested vit b12 which was 243 ng/l ( range 197-771) I rang my doctors and asked what my B12 was in March and that was 290ng/l (range 190-1000). Therefore it is falling. My question is, is this value low enough to be treated or do I just accept that these levels are normal, as the doctors say. If not is there any research out there in which I can take to GPs to show them I am entitled to be treated for low levels of B12 if this is the case why I am having these symptoms.

Thank you

2 Replies

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  • Hi vicks05,

    Are you in UK?

    I'm asking because patterns of B12 treatment vary from country to country.

    Some B12 info

    1) Pinned posts on this forum

    2) BSH Cobalamin and Folate Guidelines

    b-s-h.org.uk/guidelines/gui...

    Flowchart from BSH CObalamin Guidelines

    stichtingb12tekort.nl/weten...

    Flowchart above makes it clear that in UK, people who are symptomatic for B12 deficiency should have an IFA Intrinsic Factor Antibody test and start initial B12 treatment. This applies whether or not B12 is low or within range.

    IFA test can help to diagnose PA (Pernicious Anaemia) but test is not always reliable. It is still possible to have PA even if IFA test is negative (called Antibody Negative PA).

    3) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    4) B12 books

    "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Martyn Hooper is chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

    "Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

    Has several case studies.

    "Could it Be B12; An Epidemic of MIsdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

    Very comprehensive book about B12 deficiency with lots of case studies.

    5) PAS (Pernicious Anaemia Society)

    If you think PA is a possibility, it may be worth joining PAS.

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717

    6) BNF British National Formulary Chapter 9 Section 1.2

    bnf.nice.org.uk/drug/hydrox...

    cks.nice.org.uk/anaemia-b12...

    UK b12 treatment info is also in BSH CObalamin and Folate Guidelines

    7) B12 blogs

    Martyn Hooper's blog about PA and B12 issues

    martynhooper.com/

    Also an interesting blog on B12 deficiency Info website

    b12deficiency.info/

    "is this value low enough to be treated or do I just accept that these levels are normal"

    If you look at flowchart and also BMJ article you will see that the emphasis in UK, is on treating people who are symptomatic for B12 deficiency, whether or not their B12 is below range. Unfortunately some GPs may not be aware of these documents.

    Link below is about writing letters to Gps about B12 deficiency.

    b12deficiency.info/b12-writ...

    Point 5 is about being symptomatic with a normal range result.

    Are you symptomatic for B12 deficiency?

    pernicious-anaemia-society....

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    Do you have any risk factors for PA and B12 deficiency

    pernicious-anaemia-society....

    b12deficiency.info/what-are...

    b12deficiency.info/who-is-a...

    I am not medically trained just someone who has struggled to get a diagnosis.

  • Hi yes I'm in the UK. Thank you so much for your reply and links it is much appreciated. I will print some stuff out+take to my doctors and hopefully they will listen.

    Thanks again

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