Very high B12 but low folate

[Sparklingsunshine]

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.

[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 Administrator]

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]

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 in reply to FlipperTD]

Do you know the implication of high folate?

[FlipperTD in reply to MrsTuft]

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]

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 in reply to MrsTuft]

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 in reply to Sparklingsunshine]

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.