Help Needed With Blood Test Result. is This a B12 Deficiency ?

Hi! My hubby has idiopathic peripheral neuropathy which at first was diagnosed as Charcot Marie Tooth Disease. After evaluation in a London Hospital this was revised to the above. They could find no obvious cause and thankfully say they don't think it will get worse however there are signs that it is very gradually. He also had got quite bad periodic limb movement which makes sleeping a nightmare for me at times. he was prescribed low dose Ropinirole which has been increased but this has not really helped much.

I recently read about the connection to these symptoms and B12 deficiency and asked the GP to do tests. These have now come back but all in the normal range however I think they are too low in the range and wonder if this may be a cause for his symptoms. Id be grateful for any advice from you experienced people on this subject. Also just as an aside, I was going through some old tests of his recently and found a positive test to wheat. Im now wondering if he has an absorption problem and hidden CD although getting him on a GF diet would be almost impossible as Im GF and he just hates the limitations Im put under. Anyway here are his results:

Serum Folate 4.8 (3.0 - 20.0)

Serum Vit B12 258 (160 - 900)

MCV 94.1 (80 - 100)

Platelet 178 (150 - 400)

All the rest very normal.

Thanks.

5 Replies

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  • Folate is on the low side - you need folate to absorb B12 and use it properly so worth looking into that on its own. Best source of folate is probably green veg.

    Serum B12, whilst not outside lab 'normal' range is definitely well into the grey area where significant numbers of people show strong clinical signs of B12 deficiency so that could genuinely be the problem, especially given the symptoms you mention.

    It may be worth pointing out to your husband's GP the following guidance on in respect to interpreting B12 serum results.

    NICE

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

    section on B12 and interpreting results

    BCSH

    bcshguidelines.com/document...

    Refer to the summary on p2

    However, it can be really difficult to get GPs to consider B12 deficiency as many still seem to believe that it always involves anaemia - though it does look as if your husband is starting to get towards that point from some of the results.

    In terms of treatment the NICE guidelines and the BCSH are both treat on the basis of symptoms particularly in light of the risk of any neurological damage becoming irreversible.

    B12 deficiency can occur for a number of reasons - including drug interactions - changes in stomach acid as you get older (often compounded by use of anti-acid treatments to deal with acid reflux if that occurs as a symptom) - gastric surgery affecting the ileum - autoimmune responses.

    General gastric problems, including coeliacs are quite common in conjunction with B12 absorption problems, as are other autoimmune problems such as Thyroid problems.

    Best of luck

  • I sympathise with your husband's reluctance to go gluten free - it has taken me a long time to do this but it has made a difference to digestive problems, etc. even though I do cheat with occasional bread.

    In many countries, his B12 test result would be considered low and, in any case, the current guidelines recommend treating symptoms. The following is a link to Dr Chandy's B12d.org site, which might help you assess your husband's symptoms, which do seem to indicate deficiency and a need to treat urgently:

    b12d.org/b12-signs-symp...

    Also, here is an extract on tests from the book, "Could it be B12?" :

    "we believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

    "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

    Doctors frequently misdiagnose B12 deficiency, ascribing their symptoms to pre-existing conditions. This summary from the latest BMJ - A.A. Hunt research document might also help to convince your GP:

    " * Vitamin B12 deficiency is a common but serious condition

    * Clinical presentation may not be obvious thus leading to complex issues around diagnosis and treatment.

    * There is no ideal test to define deficiency and therefore the clinical condition of the patient is of utmost importance."

    * There is evidence that new techniques,such as measurement of holotranscobalamin and methylmalonic acid levels seem useful in more accurately defining deficiency.

    * If clinical features suggest deficiency, then it is important to treat patients to avoid neurological impairment even if there may be discordance between test results and clinical features.

    It is important to recognise that clinical features of deficiency can manifest without anaemia and also without low serum vitamin B12 levels. In these cases, treatment should still be given without delay. "

  • PS. This link might be useful:

    mdpi.com/2072-6643/5/12/503...

  • Hi, for what it's worth, I have a neurological condition (trigeminal neuralgia) and after reading 'Could it be B12?' I asked to be tested for low B12. It turned out to be 'normal' (at 393 or 398 - I forget which now) and my doctor was all for dismissing it, but I pointed out that it was in the 'grey zone' of under 400. It took a large dossier of convincing literature (gleaned from the helpful people on this forum!) but I convinced him to treat me for B12 deficiency. I got 3 weeks of loading doses then onto bi-monthly shots. I wasn't happy about the latter, especially as there HAD been a marked improvement. But after that improvement wore off at the three and a half week mark I approached my doctor and asked if he'd consider monthly shots and he agreed - just like that.

    So yes, your husband's level is definitely on the low side, and well down into the grey zone. After my first monthly maintenance shot (around a week ago) I've had the best pain management for my condition since I started both B12 and the very strong anti-convulsants I take. I don't know how long it's going to last but I think it's fabulous. It's definitely worth pushing for low B12 at your husband's test figure and being treated simply on the grounds of his neuropathic damage. But you can have the new more reliable homocysteine tests done, if you want to be surer. I didn't bother, but it's too late now, as I am dosed up the wazoo and back, and I kind of regret it. Maybe that would mean less of a fight with your doc. Good luck!

  • AbFab, Inside Health did a piece on CD, Gluten and Wheat intolerance (not necessarily the same as gluten intolerance).

    bbc.co.uk/programmes/b05077n8

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