Pernicious Anaemia Society
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B12 quite low, Folate High meaning? What to do next?

I finally convinced the doctor to give me folate test and it is high.

So this means I have B12 of 247 and folate of 21.4.

This confused me as I assumed they would both be low. Can anyone explain please?

My symptoms are getting really bad and I am quite desperate. I am going to start some B12 but my doctor is giving me one injection every 2 weeks as a booster and then onto every 2 months. I think it is the Hydrocobalmine.

Is this the right treatment to be taking?

I am trying to read up on it all but am so confused and am struggling to comprehend it all.

Can someone please take the time to give me a step by step guide on what I should do in terms of any more tests I should be taking, what I should be taking and how often and where to get it all?

I’m sorry to ask but I find it all so overwhelming.

Many thanks in advance.

Many thanks

3 Replies

High folate is known to mask the development of anaemia in B12 deficiency. On the face of it high folate just means that you are getting plenty of folate in your diet - cereals tend to be fortified but other sources are vegetables and some fruits.

Your body needs folate to absorb and use B12 - both are needed - along with B6 for some key processes. If you had low B12 and low folate then the procedure would be to deal with the folate deficiency first as that could be the cause of the B12 problems.

Your B12 levels are in the grey area where significant numbers of people show symptoms of B12 but many labs (eg in UK) show as being 'normal range'. In Japan they generally treat if levels are below 500.

If you are in the UK then standard treatment for B12 deficiency (as recommended by NICE) is either 6 loading shots over 2 weeks followed by maintenance shots ever 3 months or IF THERE IS NEUROLOGICAL INVOLVEMENT shots every other day until symptoms stop improving followed by maintenance shots ever 3 months. Treatment is with hydroxocobalamin 1mg administered intra-muscular.

Recommendation in the UK is to treat on the basis of symptoms rather than test results as there are known problems with the serum B12 test (ie the grey area).

So, doesn't sound as if your GP is quite following the guidelines laid down by NICE but you are getting some treatment.

Although the guidelines don't recognise it - significant numbers of people do experience problems with the standard treatment - it just doesn't seem to be enough for some of us. There doesn't seem to be any solid scientific evidence to support the 2 months or 3 months for maintenance shots but given that they are mentioned in the guidelines but the guidelines don't recognise that this just doesn't seem to suit some people it can be very difficult to get a GP to listen unless they have experienced B12 deficiency for themselves.

B12 isn't toxic and there are no known undesirable effects from maintaining high levels which, combined with the problems explaining when you just aren't responding that it is because you aren't getting enough, many of us end up treating ourselves. There are sub-lingual tablets and sprays, nasal sprays, skin patches and sourcing injectible B12 from outside the UK (assuming you are UK based).

Sorry this isn't quite a simple guide but hope it helps a bit

1 like

Qunk, I too have mid to low B12 levels and crazy high folate levels, as does our son.

Canada doesn't recognize this as being a problem either as the B12 is within range and I'm told there is no upper limit for the folate. I'm taking 1000ui sub-lingual methyl B12 daily and feel much better. Interestingly, the symptoms return if I stop for a couple of days.

I went for the additional homocysteine (Hcy) and methylmalonic acid (MMA) blood tests at my own expense and they were negative.

I do not take additional folate - not sure if I should or not.

Gambit62 has given you some good information, I hope you start feeling better soon.


The only downside I have been able to identify for high folate levels is that it will mask anaemia in B12 deficiency so if you already know that you have problems absorbing B12 that is a bit irrelevant so no reason to worry about high folate levels.


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