B12 level anyone?

Hey guys so I'm still in constant pain and finally managed to get a doctors appointment!

I spoke to my doctor about testing me for b12 deficiency which after a while he agreed. The thing is he said he checked my level in February and it was 233 and that's normal which means I can't be B12 deficient. But after persuasion he is doing the test again. Any advice and comments welcome please.... I'm so confused :(

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  • I had mine tested in August and it was 224 .... Signed off as normal by the GP but I had loads of symptoms. I decided to self inject as I wanted to get the levels up quickly as I was so unwell. Loads of symptoms have seen improvement since I've been injecting(some unexpected symptons I'd put down to being 50!!).

    lu xx

  • Thank you for your reply. I may have to resort to that too. Straight after I have my bloods done in the morning.. soooo scared of needles :(

  • Maybe take a look at the PAS website and their list of signs and Symptoms. Reading the Pinned Posts to the right of this page at the top may also give you the information you need to support your conversations with your GP.

    Also reading the books by Martyn Hooper and Sally Pacholok would be so helpful. I have read them both and continually refer to them.

    I would also look at testing for VitD - it is another one that if low can be linked to pain - low mood and so on.

  • It isn't the levels in your blood that counts it is what is going on at the cell level. B12 is used by a raft of systems throughout the body and, aside from problems absorbing B12 there are other things that can go on and stop B12 getting through to your cells leaving you functionally deficient.

    People vary very much in how they respond to B12 and it is quite possible to be highly symptomatic at this level and it is symptoms that count. Although macrocytosis is a common feature of a B12 deficiency it is a symptom not a cause and isn't among the first symptoms to present in at least 30% of cases of absorption problems.

    233 is certainly in the grey area where significant numbers of people can be showing clinical signs.

    Please draw your GPs attention to this alert from UKNEQAS on the importance of looking at symptoms in evaluating the possibility of a B12 deficiencyt

    pernicious-anaemia-society....

    also take a look at the papers in the pinned posts.

    GPs tend to know very little about B12 and what they do know is often full of misconceptions so you may need to work to educate your GP.

  • Thank you gambit, I do have many of the symptoms which is why I was so confused. Do you suggest I still get tested privately for the intrinsic factor?

  • Martyn Hooper's latest blog post - martynhooper.com/2016/10/24... - is about the BCSH guidelines. Martyn says -

    they address these problems by telling physicians that if the patient has the symptoms of a B12 Deficiency, yet the tests show nothing wrong, then the doctor should ignore the test results and begin treatment to prevent any neurological damage occurring.

    You can download those guidelines here - bcshguidelines.com/document...

  • When I was diagnosed my levels were 267, but I was having horrible symptoms: total exhaustion, mental fog, memory loss, neuropathy, and all of the signs of depression - it was like my brain had just shut off. Fortunately, my doctor still treated me with loading doses and I am very happy to report these symptoms are subsiding! All that to say, your "normal" level isn't really normal if you don't feel well, and it's probably worth your while to push hard for injections. I wish you the best of luck!!

  • I had my bloods done this morning finally!

    Let's see what they find. But I do plan to open my own little surgery at home myself :)

    Who needs doctors lol

  • Hi Raven321,

    When my b12 serum level was 290 (range: 200-900, can't remember the measure units) I had lots of Neuro symptoms, was exhausted also was low in iron and vitamin D.

    So as srmika says- "sometimes'normal' isn't normal"

    Good luck with it all. We are all rooting for you! :-)

  • Awe thank you so much guys for all your support! :)

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