Folic acid

[3rdNettydoon]

My son has had 4 Injections of his 6 starters. When does he need to begin taking folic acid please?

[Nackapan]

Were his Folate levels tested at the same time as his B12 serum test .They usually are .

Multivits have 200-400 mcg folic acid .

Normally a good maintenence dose if not deficient in folate .

Or eat more folate rich foods if well in range ??

[3rdNettydoon in reply to Nackapan]

He has just read it for me.

Serum Folate 5.5ug/l. Written as Borderline. Range, 2-18.8

Noone told him it was is borderline.

What does he need to buy please and from where.?

[wedgewood in reply to 3rdNettydoon]

You can buy folate acid in supermarkets) 400 mcg is a modest dose . Also obtainable on Amazon .

[Nackapan in reply to 3rdNettydoon]

My folate was at that level. I took 200-400mcg in s multivit and the next test it was at the top of the range 4 months later.

Doesn't matter what brand.

It was my ferritin that dropped.

I imagine he had an iron panel on full bloods too.

He may have bloods repeated in 4-6 months .

B12 is not needed once on injections.

Tricky if folate level wanted as usually done together with b12.

If that's the case expect b12 level to be very high .

Hope his symptoms improve

[3rdNettydoon]

Thank you for your support. Much appreciated

[ruffnut]

I was diagnosed with PA 30 yrs ago and have been on 5mg of folic acid a day since then.

[Sailinglady in reply to ruffnut]

I'm pretty sure you won't need the folic acid anymore. Usually a couple of months treatment is enough to boost your levels to the top of the range. Then, if your diet is not top notch in green veg (the source of folic acid) you can maintain it with a standard multivitamin (containing folic acid).If you want to be certain, you can request a level, but it will be checked with b12 as well which, if you're having injections, will always be high and can then cause problems accessing the injections if you still get them prescribed for you.

The only exception to this would be if you take methotrexate, in which case you would need to continue with the folic acid as advised by your specialist (usually a rheumatologist).

[Bellabab in reply to ruffnut]

So was I and when this was reduced by a GP my symptoms returned - now after a lot of trial and error I am back to 5mg/day of folic acid. I don't eat a lot of green vegetable. If we inject EOD then we use up a lot more folate than we would usually, so thats why I think I need more than the 400mcg.

[bookish in reply to Bellabab]

Has anyone ever suggested that you try a different form of folate, either folinic or methyltetrahydrofolate, to see if you get the same effect (or better) but with less of it? Even a low dose of folic just put me at the top of the range (and unmetabolised folic is possibly not such a great idea), whereas stopping folic and adding methylfolate on top of B12 in 2019 stopped some symptoms and improved others. I recently saw a paper about CFS/ME and Fibro sufferers being treated with B12 and folate (as folic acid) comparing results of symptom improvement against MTHFR polymorphisms (sadly only MTHFR but it is a start) and those that improved more were having a small dose if not badly (potentially) SNP affected but needed a large dose if they were affected to a larger degree, to get the same effect. Unfortunately they did not look at alternative vitamers of B9. Type of B12 also made a difference to some. ncbi.nlm.nih.gov/pmc/articl... Might be worth thinking about if your serum folate is high. Cheers

[Bellabab in reply to bookish]

5mg a day folic acid gives me no problems at all so I do not need to bother messing about with anything else.

[bookish in reply to Bellabab]

Up to you of course. I haven't found it a bother and it made me much better without risking the high serum folic and build up of unmetabolised folic acid. My reaction to the supplements tied up with the genetic testing that I did afterwards, so I found the article interesting (having had fibro and post-viral fatigue for many years with no medical support). Cheers

[Bellabab in reply to bookish]

What risks from high serum folic? I have looked into this and can find no evidence that there is any risk. There are some papers from the USA that suggest there might be yet thats as far as they go. Usually based on excessive wind from the exhaust pipe it soon stops and is not a problem. This appears to be because some Christian fundamentalists are totally against supplementing foods with anything at all.

[bookish in reply to Bellabab]

I'm no doubt not the best person to ask about that, but from my own reading the two main points seemed to be that high serum folate tended to deplete active B12 and increase homocysteine, and cognitive difficulties were more noticeable in those with high folate and low B12 than in those with low folate and low B12, also that unmetabolised folic acid might increase cancer risk

ncbi.nlm.nih.gov/pmc/articl...

pubmed.ncbi.nlm.nih.gov/205...

If your homocysteine is OK then maybe you are using the folic and your chosen form/s of B12 and B6 (if any) well and no reason to wory about it.

No doubt large amounts of any form of folate might cause increased risk, so I try only to take as much as I need. Like you, I get a return of symptoms quickly if I don't take my methylfolate (although I eat a ton of veg as well).

Personally I was wary because doctors told my grandmother on her PA diagnosis never to use folic (but I was very young and have no further info) also because my mother ended up with dementia - she had very low folate and low B12 but was only given folic and got worse, and finally because I was found to have a folate issue aged 17 (mild spina bifida) which links to the underlying genetic SNPs that I discovered later. The fact that my serum folate was top of range with a low dose of folic but went down to mid range with a higher dose of methylfolate instead seemed relevant to me, and the fact that some of my symptoms just went away and I could walk alone for the first time in a few years, no longer bouncing off walls and doorways was brilliant!

PS found one more link that you may find interesting

ncbi.nlm.nih.gov/pmc/articl...

[Nackapan in reply to Bellabab]

I was on EOD for months without the need for more than 200mcg folic acid.

It 3ax tested and above the top of range

I do eat folate rich food.

Again we are all different .

I woukd think you are in the minority needing 5mg folic acid daily though

[3rdNettydoon]

So I'm thinking here that my son and indeed myself just need what's in a multi vitamin? Bit muddled cos I've been afraid to take mine regularly. Don't know what amount is in the one I got cos I don't understand the dosages.

Dark

[3rdNettydoon in reply to 3rdNettydoon]

Sorry I'm not great with IT. Here is the front of the box. Is this a safe one? Do I need it. My sons folate level is borderline, does he need it?

Dark

[bookish in reply to 3rdNettydoon]

Hi, I haven't used folinic but Kirkmans is a good brand and I do use some of their supplements. This is 800mcg, which is more than the daily maintenance dose of approx. 400mcg but nothing like the 5000mcg which is sometimes used and prescribed. The DFE figure is explained here ods.od.nih.gov/pdf/factshee...

I would think your son should be ok with these as he has already started his B12 loading doses, and his folate was a bit on the low side. I take approximately 500mcg daily of methylfolate, but was taking nearly 1000mcg a few years ago. Have you been tested recently if you haven't been taking any or much? Might be worth seeing how low you are first and then either trying these or getting a lower dosed folic/folate/folinic if you just need to maintain. Multi vitamins often have not enough of the right things to be useful and may not be in a form that is best for you.