Folate/Folic Acid daily supplement. - Pernicious Anaemi...

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Folate/Folic Acid daily supplement.

kittyflowers profile image
17 Replies

Please can someone confirm how much folate/folic acid I should be taking daily. I know its 400iu daily for 12 week injections b12 but I have a lot of neurological symptoms and just realised it should be more as I inject every other day. Thank you.

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17 Replies
kittyflowers profile image
kittyflowers

Thanks!

I got confused because another site recommends 5mg folic acid anyway if you are on injections every other day as I am because of neurological symptoms. 400mcg if you are on 12 weekly jabs. Last folate test over a year ago was at low end so think I will increase for a while.

Foggyme profile image
FoggymeAdministrator in reply tokittyflowers

Hi Kittyflowers

We often get people posting here who have been advised by a Facebook group that it is necessary to take 5mg folic acid daily when injecting vitamin B12 frequently: this is wrong. And potentially dangerous.

It’s also worth noting that there is no necessity to take folic acid supplements simply because vitamin B12 is being injected (nor is there a correlation between the frequency of B12 injections and any additional 'requirement' for folic acid).

This is an extremely high dose of folic acid and should only be taken if there is a proven deficiency...and then only under medical advice and until that deficiency has resolved (usually 3-4 months - unless taken to counteract the effects of medications that interfere with folate uptake - and then, only on medical advice).

400mcg daily is the standard maintenance dose for folic acid but even this may be too much if there is no deficiency present. 400mcg on a daily basis if you don't need it can cause quite nasty side effects (including neurological ones) and if taken long-term, can increase the potential for damage.

Talk of optimal levels of folic acid is also misleading and inaccurate - human bodies are like cars - the petrol and oil (folic acid levels) differ for each individual - the body 'finds' its own 'operating' level - and pushing past that level artificially to maintain some fictitious 'optimal' level can be detrimental to health.

A growing body of research evidence indicates that over-supplementing with folic acid (or any form of folate) may result in potentially irreversible neurological damage and other detrimental systemic effects (I'm sorry but I'm not able to post links to those research papers right now (my iPad has disappeared them 🤨) but if you search on the internet they’re quite easy to find).

So...please don't taken 5mg folic acid daily unless you have a proven deficiency. It's also not a good idea to take folic acid supplements based on a folate level that was 'at the low end' over a year ago.

Best idea is to ask your GP to test your folate levels...and then supplement (or not) based on accurate and up to date results.

It’s worth me saying that when I was initially diagnosed with B12 deficiency I initially took 5mg folic acid daily without having folate levels tested...accidentally over-supplemented, and became very ill indeed. I made the mistake of thinking that this was due to B12 deficiency (rather than over-supplementing with folic acid) and it wasn't until I got my folate levels tested (way over the top of the reference range), did some research and realised that high dose folic acid was making me iller than I needed to be!

Over supplementing with any vitamin, mineral or herbal product can cause real problems (i.e. vitamin B6 can cause neurotoxicity, too much vitamin D is toxic) so it’s always best to research everything and take medical advice before adding in any additional supplements (especially relevant if on any other medications because there are often surprising interactions and contraindications - even with quite common over the counter drugs (i,e, paracetamol).

Neurological symptoms can take longer to resolve than other symptoms since neurotically repair does take longer, so don't despair. Keep up with the B12 injections at a frequency that keeps symptoms at bay.

If you are having your B12 injections every 12 weeks, your treatment is not in line with current treatment guidelines: your B12 deficiency is being under treated!

Most importantly, when neurological symptoms are present, injections all guidelines states injections should be prescribed every other day until symptoms stop improving - sometimes for many months (many GP's do not know this). I suspect that you need this intensive treatment regime due to your ongoing neuro symptoms.

Here's a couple of links to information about treatment (BNF reference time every other day injections is about the third paragraph down - many GP's don't read that far so you may have to point it out):

bnf.nice.org.uk/drug/hydrox... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

Good luck. Let us know how you get on 👍

Seth12345 profile image
Seth12345 in reply toFoggyme

Just an FYI, my neurologist from one of the top 3 hospitals in the US advises AGAINST taking a B Complex vitamin because getting high levels of folate can cause serious nerve issues that mimic those if a B12 deficiency. I discussed this with him pretty extensively when he was evaluating what vitamins and supplements I was taking.

kittyflowers profile image
kittyflowers in reply toFoggyme

Thank you for your comprehensive reply.

Seth12345 profile image
Seth12345

Don't take excessive folate.. You should only ever supplement if you are low or deficienct in it.

The amount to supplement really depends on how much you need.

kittyflowers profile image
kittyflowers in reply toSeth12345

Ok. Though its water soluble and safe to take.

Seth12345 profile image
Seth12345 in reply tokittyflowers

Read about taking too much folic acid or folate. It does have side effects. Too much of a good thing can be bad.

kittyflowers profile image
kittyflowers in reply toSeth12345

Thanks

wedgewood profile image
wedgewood in reply tokittyflowers

Water-soluble doesnt necessarily mean that you can’t overdose , although you can’t overdose on water-soluble B12

kittyflowers profile image
kittyflowers in reply towedgewood

Thank you

Nackapan profile image
Nackapan in reply tokittyflowers

I only took 400mcg for a short while and weng puf of range. So on days I tske it I only have 200mcg. Go by bloods. Was just back in range but at the top last time. Just eat more greens toh cant over do those!

fbirder profile image
fbirder in reply tokittyflowers

No.

Being water soluble does not make something safe. Potassium cyanide is water soluble. It's generally recognised as not safe.

kittyflowers profile image
kittyflowers in reply tofbirder

Thank you

fbirder profile image
fbirder

That FaceBook group should be shut down.

B12 and folate are like oil and Petrol in a car. Most people have plenty of oil and only need to top up with small amounts every now and then. Others have a small oil leak that means they need to top up every month. Some have a huge leak and need to top up every week, or every day.

But all those people still need to put the same amount of petrol in their tank. If they top up with oil once a year or once a week, it's all the same when it comes to petrol. And it's the same with B12 and folate.

In the USA all women who can become pregnant are advised to take 400 mcg of folic acid a day - in addition to that consumed in their diet. cdc.gov/ncbddd/folicacid/re....

Unlike the serum B12 test, the test for folates is both precise and accurate. And the normal range will cover 95% of normal people. The level of folate in the blood can also vary day to day depending on how much has been consumed recently. So you needn't worry about being at the low end of normal.

Here is a document that describes how B12 and folate work together, with links to the science behind problems with high doses. b12science.com/B12Science/D...

wedgewood profile image
wedgewood in reply tofbirder

Thanks for that — interesting and useful for us .

kittyflowers profile image
kittyflowers in reply tofbirder

Thank you fbirder.

kittyflowers profile image
kittyflowers

Thank you

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