Update

Well my IFA test came back as negative but my Methylmalonic acid serum came back high at 33 (range ?-27) the gp has advised that she needs an opinion from a haematologist as "my case is complicated". I have checked with surgery that this had been done (no faith) and they confirmed it was done on 19th September with a usual 7-10 working day response time "but can take longer". I have no follow up appointment and am just awaiting to see what comes of this.

The tiredness is killing me but I don't want to go running back to the docs again.

I am worried now though as my initial bloods were sent on to genetic specialists, and what can be so complicated. Thoughts anyone

4 Replies

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  • Ask to be put on a course of B12 injections now.

    The anti-IF test is totally unreliable - a negative result is meaningless.

    Your MMA suggests a B12 deficiency.

    This is what the BCSH says about treatment:

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

    treatment should not be delayed to avoid neurological impairment.

  • The gp said she didn't want to start them until she had discussed it with the haemologist, which obviously seemed strange and hence added to my concern

  • I doubt your case is complicated - more likely that your GP really isn't aware that you can be B12 deficient with out being anaemic - if you haven't got any anaemia ... and that they aren't aware of just how inconclusive a negative result on IFA is.

    This article lists a couple of other things that can cause elevated MMA levels including pregnancy and kidney problems.

    Personally think the pregnancy could be related to B12 as you need more in pregnancy but that is just a gut reaction and I'm not a medical scientist/specialist.

    Hope that the haematologist is a bit more knowledgeable about B12 than your GP - at least they should be more aware of the BCSH guidelines.

  • Has she seen page 29 of the BCSH Cobalamin and Folate Guidelines... a diagnosis flowchart?

    It mentions Antibody Negative PA (PA where the iFA test is negative). I gave my GPs a copy of whole BCSH Cobalamin and Folate Guidelines.

    "my initial bloods were sent on to genetic specialists"

    Just wondered if you had looked into MTHFR gene mutations?

    labtestsonline.org.uk/under...

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