B12 LEVELS

Hello,

I have had my B12 levels checked a few times over the last year, and each time they have been just within the recommended limits (limit 189-883, my last reading 192). I have seen a GP who said "it's fine, it's in the limit" but as I am presenting with extreme tiredness, shakes etc, thought they may offer me the injections....

What does everyone think?

Thank you.

16 Replies

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  • Hi,

    I have read that it is possible to have severe B12 deficiency with B12 blood levels that are normal range.

    Have a look at

    1)BCSH Cobalamin and Folate Guidelines

    2)http://www.bmj.com/content/349/bmj.g5226

    3)http://www.ukneqas-haematinics.org.uk/content/News.asp?id=46

    Fbirder has a useful summary of B12 documents if you serach his posts.

  • Fbirder has a useful summary of B12 documents if you search his posts.

    B12 deficiency symptoms

    What symptoms do you have? See lists below.

    pernicious-anaemia-society.... See Symptoms Checklist

    b12deficiency.info/signs-an...

    People with B12 deficiency and neuro symptoms are supposed to receive extended loading doses and more frequent maintenance doses.

    UK b12 websites

    b12deficiency.info/

    pernicious-anaemia-society.... 01656 769 717 The PAS are helpfula nd sympathetic to talk to. lifetime membership costs £20.

    b12d.org

    martynhooper.com/

    B12 books

    Could it Be b12 by Sally Pacholok

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

    Uk B12 treatment

    patient.info/doctor/pernici... see Management section

    Treatment info also in BCSH Cobalamin and Folate Guidelines page 8

  • Thank you, they are very interesting reads!! On the symptoms list I tick quite a few boxes, including palpitations, extreme fatigue, mood swings (v bad!!!), brittle nails, acne, and sleep disturbances! I wish I would have a GP that would take me seriously!!

  • Here's my summary document - frankhollis.com/temp/Summar...

    And here's what it says about treatment -

    Clinical symptoms should be treated, not blood levels

    BCSH1:

    The clinical picture is the most important factor in assessing the significance of test results

    assessing cobalamin status since there is no ‘gold standard’ test to define deficiency.

    BCSH2:

    In the presence of discordance between the test result and strong clinical features of deficiency,

    treatment should not be delayed to avoid neurological impairment.

    BCSH4:

    Furthermore, patients with strong clinical features of cobalamin deficiency may have serum

    cobalamin levels which lie within the reference range (false normal cobalamin level).

    BMJ1:

    If the clinical features suggest deficiency then it is important to treat patients to avoid

    neurological impairment even if there may be discordance between the results and clinical features

  • You have done us all unimaginable good by putting these documents together for us. Thanks 1,000,000!

  • Thank you very much :)

  • You are literally only just over the cut off. The gp should be treating the symptoms not numbers. Can only suggest you ask that he give you a trial period of dosing to see if it makes a difference or find out why you have the symptoms in the first place.

  • I will have to phone them and try to convince them to give me a trial!!!

  • l have b12 levels of 140 and my lab cut off was 110 no matter what l said about guidelines my doc would not treat full stop, get your ferritin levels checked they apparently need to be around 80 to uptake b12 properly you coul also get vit d levels checked most of us in the uk are deficient l have all three of these deficiencies but docs not interested in finding out why you will find it is the same story for a huge amount of us l use patches and sprays and have a bottle of methyl b12 and am thinking of self injecting b12d.org is a charity that will give you good info plus the b12 if needed the pa society also have good info l do agree it is a minefield good luck

  • my ferritin levels are 39 ug/L.. is that low then?

  • its not all that low but you could do with getting it up higher my lab ranger are 13-150 you will not get any iron supplements from the docs as its too high for that but you could try spatone its a gentle iron enriched water natural there will be stronger ones you could try over the counter vit d helps a lot with bone pain and weakness hope you get on ok keep us all posted

  • I came up in the red on the b12d.org health check, have tried ordering

  • dr chandy who helps run the charity would also e-mail you advice and is pretty quick to respond

  • Would just add that the problem with reference ranges is that they are indicative of the distribution in the general population. Meaning that if you randomly selected a hundred healthy people and measured their B12, this is the range of values you would find.

    Unfortunately there are a host of issues with the B12 assay and only the unwise (sarcasm) try to correlate levels with symptoms. You'll find plenty on this in the references already given.

    Good luck x

  • Also, if the assumption is that 2.5% are over-range and 2.5% are under-range, what happens when more than 5% should be regarded as out of range? With that 2.5% assumption built-in, all that can happen is that the excess over 5% are regarded as in-range.

    (Trying to keep it simple and symmetrical - I know it doesn't fully make sense.)

  • B12 serum numbers are known to be inadequate as a way of diagnosing a B12 deficiency - maddening.

    Suggest you send this alert by the body that regulates quality assurance on blood assays on just using B12 serum numbers - quite clear that clinical presentation cannot be ignored

    ukneqas-haematinics.org.uk/...

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