Pernicious Anaemia Society
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folic acid requirements help

Hi, I am still injecting twice/3times a week since Christmas. I am taking 1000mcg folic acid daily. I don't think this is enough but don't want to take too much. Does anyone know if I should be taking more daily ?

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Hi Justified I guess the best answer is to have your serum Folate level tested by your doctor and he/she can determine the amount you should be taking..

I'm not medically qualified but personally I have bee taking 1 – Folic Acid 400μg tablet every day for more years than I can remember and I have B12 injections every 3 weeks

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thanks clivealive , I can't ask my doctor as she doesn't know I SI. I have had great improvements in general but recently have regained so much movement in my left leg that I want to keep up. I didn't even expect this as I thought it was arthritis that was causing me to limp and slightly drag this leg. Doctor is giving me monthly at the moment so don't want to rock the boat here. When my B12 d was discovered last April my folate level was 2.4. I had 5mg folic acid for 2 months then they said I didn't need any more. My lower back is very painful/feels inflamed right at the base of my spine. I just wondered if it was anything to do with my folate levels being low again if I'm using so much B12, or even not related at all. Many thanks for your help. I will stick to the 1000mcg just now

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Fortunately Justified Folate is available naturally in many foods and is even being fortified into some breakfast cereals.

"Folic acid works closely with vitamin B12 in making red blood cells and helps iron function properly in the body. Vitamin B9 works with vitamins B6 and B12 and other nutrients in controlling the blood levels of the amino acid homocysteine."

Vitamin B9 (Folic acid) University of Maryland Medical Centre

Sorry about your back pains - hopefully they will ease soon.

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While tales of people experiencing symptoms of B12 deficiency despite high serum levels are well known. I know of nobody who suffers symptoms of folate deficiency when taking very high-dose supplements.

Apart from a very small percentage of people who have an inbuilt metabolic defect that affects their ability to convert folic acid into methylfolate. Those people may find that supplementing with methylfolate, 400 ug per day, may help them. You can get it from Amazon.

It's worth giving it a try. It can't be worse than taking folic acid and it may be better.

Suck it and see.

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Thanks fbirder I just wondered if there is a minimum amount of folic acid you should take according to the frequency of injections as co factor

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Not really. Most people with a healthy diet shouldn't need to supplement at all. Taking more B12 shouldn't result in a greater need for folate. Unless your doctor prescribes a high dose supplement for a diagnosed deficiency then 400 to 800 ug a day should be enough for almost everybody.

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I'm talking the same dose too for 3 months, feeling fine but going to get test of my serum level in 2 months when I see the doctor.

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Hi Justified!

Folate or B9 is extremely safe with any excess excreted from your body so it is possible, as with the B12, to freely supplement to control your symptoms.

It is needed in quite high levels to make the extra B12 work, along with many other vitamins and minerals, especially potassium and magnesium, maybe iron.

If you are on every day or every other day injections the frequently recommended dose is 5mg (which =5000 mcg) per day, even with a good diet.

My blood folate levels were good but I still needed a high level of supplementation to reduce my symptoms.

I seem to have a problem with methylation and after a while I found I needed to take methylfolate, rather than just folic acid, and was taking 6 x 800 mcg methylfolate tablets per day with the remainder coming from folic acid in my A-Z Multivitamin and Mineral tablets. There are a few people for whom this also doesn't work and they need folinic acid. 18 months on I have now been able to reduce my methylfolate tablets to 4 x 800 mcg per day but occasionally still need extra folic acid.

It is important that you are taking as much B12 as you need before increasing your folate as only the B12 will heal your nerve damage and extra folate can, by making you feel better, mask the symptoms of the B12 deficiency.

The accepted recommendation is that you increase your B12 injections (while taking base line supporting supplements) to a level where you cannot get any further improvement in symptoms on a day to day basis. Although for many people this can be as often as every other day or daily jabs, for me this is 1.5 mg daily, while some people need 2 jabs a day for years/decades. When you are sure you are getting plenty of B12 then increase your B9 as folic acid until you don't get any further improvement, bearing in mind that this could be to a level of around 5000 mcg (which = 5 mg), including that from your other supplements.

If this works for a while but then you find your symptoms returning, consider increasing the levels of other things, guided by the type of symptoms you are getting. If you know that nothing else is limiting your progress then consider changing to methylfolate.

At all stages only ever change one thing at a time and give your body several days on the new level of supplementation for it to adjust and stabilise. Once you get no further improvement for a while you can try slowly reducing your levels, one thing at a time, so you know you are not taking more than you need.

Always be extra careful when supplementing with minerals and some vitamins, particularly B6 as they do have upper limits above which they can cause problems. I Googled everything to see what the symptoms of deficiency and excess of each thing was to give me ideas of what to expect.

For more information, including sources of supplies, you could look up my profile by double clicking on my name and see my post, "My Experiences".

Good luck with getting the balance right!

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Wow, fantastic information, thanks so much for taken ng the time to write all this. I will increase my tablets to 3x 1000 MCG (3mg) first then to see how that goes first then. I take vit d3 &k2 ,plus magnesium citrate,vitamin c drink with zinc plus a b complex with only the lower b6 as recommended. As long as I know I am not taking too much then that puts my mind at rest. Still 4months on & two off ?

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I agree with fbirder and clivealive. I'm not a medic either but from what I understand only people with a diagnosed deficiency (or other medical reason) would need to be on such high levels and they would be doing it under medical supervision. I'd ask your GP to recheck your folate levels and discuss whether you need to supplement with them in light of the results. Injecting B12 doesn't influence the results of a folate test as far as I know and if they happen to measure your B12 too at the same time it should be high anyway from your monthly (prescribed!) injections.

I think most people can get sufficient folate / folic acid from food sources (fortified breads and cereals, broccoli, chickpeas, spinach and many more) and so don't need to supplement. The daily recommended intake is 200ug and the average folate intake for women is ~250ug/day (according to the EU link below). Add in your B complex (which will probably contain~200ug folic acid or methylfolate) so you would probably be getting enough without any further extra supplementation.

I'm supplementing 200 or 400ug/day as I regularly test in the lower 20% of the range for folate in blood tests despite a diet containing reasonable amounts of it.

Not sure where deniseinmilden has got the figure of 5mg/day being "the frequently recommend dose" for those on frequent b12 injections. Not come across that being recommended for anyone unless they are under medical supervision for a folate deficiency or other medical reasons. In fact the NHS and EU both recommend the upper daily intake limit (including your dietary intake) to be 1mg/day (= 1000ug/day).

nhs.uk/Conditions/vitamins-...

efsa.europa.eu/sites/defaul...

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extract from BCSH guidelines referring to BNF

Have highlighted the point which is probably the source of doses of 5mg a day

The BNF has outlined the treatment of folate deficiency as follows ( medicinescomplete.com/mc/bn... ):

- Folate deficient megaloblastic anaemia (due to dietary insufficiency, pregnancy or antiepileptics): 5 mg of folic acid daily is taken for 4 months, except in pregnancy where it is continued until term, and up to 15 mg daily for 4 months is suggested in malabsorptive states.

- Chronic haemolytic states and renal dialysis: the prophylactic dose suggested is 5 mg daily to weekly, depending on the diet and rate of haemolysis.

- Pregnancy: the prophylactic dose suggested is 200–500 μg daily

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As Gambit62 has said, plus several other articles that have come up on here over the years and excellent, life saving advice from the other B12 deficiency support group that I belong to that has over 14,000 members from around the world and many very knowledgeable and experienced people. Plus information from a top arthritis nurse seen in the last couple of weeks... and the fact that even ordinary GPs will dish out 5mg tablets to people... And that's just off the top of my head!!!

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Do you have links to the papers you mention deniseinmilden? I'd be interested to read them and learn more if you can find them again! :-)

All I was saying was that these reputable sources say 1mg is the upper daily limit they recommend. Yes those under a doctors care for a folate deficiency or other medical reason may be taking more than this and the BNF supports this point. Presumably the risks of not treating these people are higher than the risks of treating them with this high dose.

If you have had medical advice saying it is safe for you to take this 5mg dose, great, but that is different to saying it is right for everyone... I just gave links that may (or may not!) help Justified make her own decicion on the safety of self supplementing at high levels (since she is not being prescribed this dose by her doctor) and especially as she does not appear to want to retest her folate levels. I was mearly trying to be helpful as they helped me make my own personal decision on supplementing. Our opinions on here are just that... and are not a substitute for medical advice at the end of the day.

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Sorry, no, I haven't been really well enough to be sufficiently organised to log all the links - I struggle to be well enough just to work enough to be sane and solvent.

I too was only posting my experiences to be helpful and I have not told anyone what to do.

I stand by what I said.

If we all followed only what the Drs say we'd all be on 3 monthly jabs, many more would be suffering appallingly and I would be dead.

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I am unable to offer evidence at the moment, but "the figure of 5mg/day being "the frequently recommend dose" for those on frequent b12 injections" is what is recommended by a Pernicious Anaemia/B12 deficiency support group. I SI SC every other or every 2 days and take 5mg on those days and rely on what is in my multi or B complex on the other days, I think that I will take Denise's suggestion on board and read up on the symptoms of shortage and excess of folic acid. I have other complex conditions and it is difficult to know what to do sometimes for the best, bearing in mind that many medics are quite happy for a sick person to be bumping along the bottom of a range for a long time without any recognition of how this might be affecting the patient. I get a copy (online now) of every test and challenge things frequently, I hate to think what state I would be in now if I had not (sorry for the minor rant).

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A slight caveat on very high doses of folate relating to studies of high doses of folic acid in mice.

In mice very high doses have been observed to artificially triger MTHFR like problems with methylation of B9

However, I'm not sure how high the doses would need to be in humans and I can't remember the specific doses in respect of the mice concerned but it's probably one of those studies that when scaled up would result in having to take a considerable amount of folic acid and it hasn't been replicated in humans to my knowledge.

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