Very high B12 but low folate - Pernicious Anaemi...

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Very high B12 but low folate

Sparklingsunshine profile image

Hi all

I've been experiencing weird off balance lurching sensations for over 2 months now. Plus weird neuro symptoms like tingling and pins and needles. Had a raft of investigations including brain MRI, nerve conduction studies. All OK. I had some blood tests on Monday. B12 very high, I get jabs from GP every 3 months. In fact I had one today.

My level was 2000 (range 197 to 771) but my folate was lousy at 3.4. I'm on the thyroid forum as I have underactive and I've been supplementing since October with 400mg of methylfolate daily. As well as a B complex.

In this time my level has dropped from 4.5 in October (range 3.0 -20) to just over 3. Its very odd. Anyone got any ideas please. Is 2000 a good number on B12 jabs. I've no idea what's a good amount. Thanks.

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8 Replies
Pickle500 profile image
Pickle500

2,000 is I think the highest the readings will go. So you may even be in excess of 2,000.

Its a good amount if it includes the context that you have been receiving high doses of b12 jabs and supplements. But this may not mean that much if you had a deficiency beforehand

Gambit62 profile image
Gambit62Administrator

your folate is still in range and because folate levels aren't regulated from a store the way B12 ranges are its much less likely that you could be folate deficient if your levels are in the normal range. There are a lot of things that can cause neurological symptoms - have you been assessed by a physio or referred or a neurologist for an evaluation?

I'm having significant balance problems myself at the moment but they are caused by weakness in the left side - had a physio assessment yesterday and she is trying to refer me for an MRI. The assessment identified that I have significant loss of strength in my lower left leg and absence of reflexes in the left ankle (as opposed to very exaggerated reflexes everywhere else). Suspicions is a trapped nerve. I really don't suspect B12 is involved because it is asymmetric.

FlipperTD profile image
FlipperTD

Hi. Scientist, not medic. I have done literally millions of these B12 assays. [well, my equipment did!]

2,000 is the upper limit for the particular method used. It could easily be much higher than that, but that's irrelevant. It's simply 'over-range' and reflects your regular injections. It just means 'more than enough'. It's really not worth measuring B12 on someone on regular injections, and can confuse.

Serum folate is another matter; we don't store folate so we need a regular intake, ideally from the diet, but if not, then via tablets. Avoid overdoing the folate intake [this will only happen from tablets, not diet.]

If possible then you could ask if the lab does 'Red cell folate' as well, which can be a more useful test although it's more tedious to perform. Some labs do, and some don't for reasons I won't go into here!

Good luck.

MrsTuft profile image
MrsTuft in reply toFlipperTD

Do you know the implication of high folate?

FlipperTD profile image
FlipperTD in reply toMrsTuft

Hi. That's a tricky one, because 'it all depends' and it's best discussed with someone who is qualified to advise and knows the full clinical picture. Sorry to seem evasive!

MrsTuft profile image
MrsTuft

Your B12 will show high on jabs. Usually GP's will give a 3-4 month 5mg folic acid if you're that low. Or you could do it yourself. Look at the NICE guidelines on low folate. x

Sparklingsunshine profile image
Sparklingsunshine in reply toMrsTuft

Hi

I have underactive thyroid and they advise us hypos to supplement with methylfolate rather than folic acid as many of us don't convert folic acid well. I don't get how my levels have dropped even though I've been regularly supplementing since October. Thanks very much for your input.

MrsTuft profile image
MrsTuft in reply toSparklingsunshine

Then use methyl folate in higher doses? B12 and folate work together so if B12 is high it canes through folate unless you’re getting enough of it.

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