Lab Results - Need Advice

I just got my labs back and need advice on how to proceed:

Serum Folate - October - 10.8 ug/l December - 2.6 ug/l!! (3.90-20.00ug/l)

Serum B12 -- October 437 ng/L December - 724 ng/L (197.00 - 771.00ng/L)

So according to my labs my B12 has increased (I am supplementing with sublingual spray) but my folate has gone down to the point where I am now deficient (no supplementation for this).

To add to this I have Hashimotos Disease and am currently on T4 only medication.

Given that I have Hashis and vitiligo I'm pretty sure I have either pernicious anaemia or coeliac disease (or both) since they tend to co exist, although my B12 levels don't immediately suggest this. I've had symptoms over the past few months of my feet and hands going numb, breathlessness, heart palpitations, irregular heartbeats, dizziness, confusion, fatigue etc.

I have a GP appointment tomorrow and I'm going to argue my case and ask that they test for anti bodies for coeliac and pernicious anaemia but am expecting to be met with resistance.

Should I keep supplementing with B12 only or given my obvious folate deficiency should I start supplementing that also ?

Also any advice please about convincing my GP to test for the antibodies ?

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5 Replies

  • Your symptoms could be just due to the folate deficiency. Start taking folic acid (800 ug a day) and stop the B12 (B12 without folate can be a bad idea). After a couple of weeks drop to 400 ug a day of folate. You can also restart the B12 if you feel it necessary.

  • Thanks for the advice ! A lot of what I've read mentioned not taking folate if I suspected a potential B12 deficiency, so I've been avoiding it despite my bloods. Will get on it ASAP.

    Do you think it's still worth pursuing the pernicious anaemia angle because I haven't my serum b12 tested whilst not supplementing.

    It;'s all very confusing because the symptoms also mirror that of hashimotos disease but my TSH is currently 1.9 with FreeT4 at 19.5, so I've kinda ruled that out to be honest.

  • folate deficiency is much more clear cut than B12 deficiency. This means that if a GP is going just by test results and looking for macrocytosis as the indicating a B12 deficiency there is a real risk that the B12 deficiency will continue to go undetected - and the folate supplementation will further mask any tendency to macrocytosis - leaving the b12 deficiency untreated risks permanent neurological damage.

    if both folate and B12 deficiency are present then the B12 deficiency should be addressed first - but only by a day or so - because without folate the body won't be able to process the B12 it has received.

    Hope that getting your folate levels up does the trick.

  • "Also any advice please about convincing my GP to test for the antibodies ? "

    Has your GP got a copy of the BCSH Cobalamin and Folate Guidelines?

    I gave a copy of BCSH Cobalamin document to GPs plus a copy of Martyn Hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" . click on box that says "Diagnosis of B12 and Folate Deficiency", should be on page 3 or put "cobalamin and folate guidelines" in search box.

    Link below to flowchart in BCSH Cobalamin and Folate guidelines, mentions when to order IFA (intrinsic Factor Antibody)test and also mentions Antibody Negative PA.

  • My interpretation, i'm not a medic, is that these guidelines make it clear that a person who is symptomatic for b12 deficiency should have an IFA test whatever their level.

    Does your GP have a list of all your symptoms?

    pernicious-anaemia-society.... click on Symptoms checklist

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