Borderline B12 test results - please help - no joy from GP

My b12 was 202 ng/l in Feb 2017 (reference range 200-900) - GP said normal and refused to do anything. I took sublingual for a month but seemed to do very little. Private text results on Intrinsic Factor Antibody result 3.00 Au/ML. The lab said this was normal. Is it? Gastric Parietal antibody test also came back negative.

Another B12 test from GP in May 2017: result was 250 ng/l again the GP said this was normal. However, I am having horrible symptoms and would like some advice. symptoms:

dizziness - lightheadedness daily

feel faint

vision problems - blurred etc.

facial twitching (eye area)

aversion to strong smells

anxiety

cold sweats - chills then hot flushes

weakness in legs

loss of appetite

horrible daily nausea

hands and feet very cold (blue)

disturbed sleep

tiredness.

Any advice would be so gratefully received.

Thank you,

Chris

9 Replies

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  • As you appear to be having neurological symptoms your doctor should treat you in accordance with the N.I.C.E. guidelines.

    The supplements you have been taking are obviously "getting through" but but you are still "bumping along at the bottom of the range.

    Was your folate level checked?

    Click on the link below, then on "Scenario ManagemenT2 then on "Treatment for B12 deficiency"

    google.co.uk/url?sa=t&rct=j...

    I'm not medically trained but there are others on here who will be able to give you good advice

  • Dear Clive,

    Many thanks. Oh how good it is to feel people are listening! I have not had my folate level checked. I was taking sublingual for a month before my latest test which may explain the borderline levels.

    Do you know, if Intrinsic factor antibodies level 3 au/l normal? The lab told me it was classed as 'negative'. Is this usual?

    I have a GP appointment tomorrow - will read all the documents you suggest and go ready!

    Chris

  • Hi,

    Are you in UK?

    If yes, I'd suggest reading the whole of "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, patients who are symptomatic for B12 deficiency should have an IFA (Intrinsic Factor Antibody) test and start initial b12 treatment. This applies whether B12 is low or within range.

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

    Are you symptomatic for B12 deficiency? See lists underneath.

    pernicious-anaemia-society.... see PAS checklist

    b12deficiency.info/signs-an...

    b12d.org/admin/healthcheck/...

    In UK, people with B12 deficiency with neurological symptoms are supposed to get more intensive B12 treatment.

    See BSH Cobalamin and Folate Guidelines or BNF link below for info on UK B12 treatment.

    evidence.nhs.uk/formulary/b...

    Other Sources of B12 info

    Some may not apply if you're not in UK.

    1) Pinned posts on this forum

    2) PAS (Pernicious Anaemia Society)

    pernicious-anaemia-society....

    PAS tel no +44 (0)1656 769 717 answerphone so messages can be left

    Martyn Hooper's blog about PA and B12 issues

    martynhooper.com/

    3) B12 Deficiency Info website

    Lots of B12 info and an interesting B12 blog.

    4) b12d.org

    b12d.org

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

    Up to date with UK B12 guidelines.

    6) Book "Could it Be B12" by Sally Pacholok and JJ. Stuart (USA authors)

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

    7) BMJ B12 article

    bmj.com/content/349/bmj.g5226

    What to do next?

    b12deficiency.info/what-to-...

    Who gets PA and B12 deficiency?

    b12deficiency.info/what-are...

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

    pernicious-anaemia-society....

    Unhappy with treatment?

    Letters to GP about B12 Deficiency

    b12deficiency.info/b12-writ...

    CAB

    citizensadvice.org.uk/healt...

    HDA patient care trust

    UK charity that offers free second opinions on medical diagnoses and treatment.

    hdapatientcaretrust.com/

    Have you considered contacting PAS? They are sympathetic and can point people to useful info.

    "result was 250 ng/l again the GP said this was normal. However, I am having horrible symptoms"

    It's possible to have severe B12 deficiency with B12 levels that are within range. see link underneath.

    b12deficiency.info/b12-writ...

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

  • Thank you so much. I will take a look at all of these. Is it possible to have such strong symptoms when borderline . . . I have felt like i was going mad and no medical expert would listen!

    Chris

  • In my personal opinion, yes...I was highly symptomatic for many years with b12 levels between 300 and 400ng.

    I think borderline results are mentioned in several of the links above and in the two B12 books.

    In UK in recent years there has been an emphasis on paying more attention to symptoms ....see BMJ B12 article, BSH Cobalamin guidelines, UK NEQAS B12 Alert etc

    "no medical expert would listen"

    That is sadly the experience of some on this forum and why I think it's a good idea to read as much about b12 deficiency as possible.

  • I would go along with Sleepybunny on that as well, my B12 was 385ng with horrendous neurological symptoms and over range MCV. I was even dismissed by a neurologist.

  • Sounds like MS...

  • Chris,

    You sound just like me, except I also have high anxiety & depression. I'm in the US. I had 10 weeks of once weekly 1000mg Vit B injections. I also have neuropathy. And the other symptoms you listed. I'm 21 on birth control. I don't have pernicious anemia, don't have celiac, I was also tested for intrinsic factor which was normal. Now I'm being told I should try antidepressants! I've already tried a few & they didn't work for me. I'm waiting to hear from my neurologist. Left a message but cannot get in for a month. The last time I saw my neuro they recommended nasal B12 drop which is a prescription here, it's only 500mcg once a week so I'm also using sublingual also. My B12 did go up to 800, was tested a week after last injection. With my mood I'm really wondering if I'm bipolar without the "highs". Hang in there. I'm not giving up! Also read "Could it be B 12". It's almost like I could of written the book except no test is confirming it. Have you had ALL thyroid tests done? Mine were all normal, no antibiotics etc, ultrasound only should slight to moderate enlargement.

    Wishing you the best & better luck than me!

    Crazy~

  • You might need B12 injections if oral supplementing doesn't help.

    B12 injections work like magic, but you need to give it time. I started feeling better after 9--10 injections (one per week) then you can lessen the frequency of injections. Some people manage with once a month but most docs recommend 1 every 3 months which is not enough for most people.

    I self inject 1 every 2 weeks. (1ml B12)

    It all depends on how bad your symptoms are.

    You also normally need to take Folic Acid daily when on injections. Normally 400iu so B12 is used properly.

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