Folate deficiency advice please! - Pernicious Anaemi...

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Folate deficiency advice please!

JoannePA profile image
20 Replies

Hi everyone

I was wondering, my folate diminishes to being deficient from a very high level over a year each time. My doctors then prescribe 5mg doses of folic acid for 3 months. Am I best to take the small supermarket dose of every day to maintain a correct level of folate or take 3 montgs of 5mg roughly once per year? Thanks for your help

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JoannePA profile image
JoannePA
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clivealive profile image
clivealiveForum Support

Hi JoannePA

Personally I have taken 1 – Folic Acid 400μg tablet every day for more years than I can remember.

If your level consistently falls over time it would seem sensible to take a small "maintenance" dose all the time.

I have the same problem with iron and am permanently prescribed 1 – Ferrous Fumarate 210mg tablet every day

I am not a medically trained person but I've had Pernicious Anaemia (one of many causes of B12 deficiency) for more than 46 years.

I wish you well.

JoannePA profile image
JoannePA in reply to clivealive

Thanks Clive that's great I think I will sort that out from now on.

clivealive profile image
clivealiveForum Support in reply to JoannePA

Folic acid at that strength can be bought cheaply over the counter at any pharmacy or supermarket.

Goodnight.

JoannePA profile image
JoannePA in reply to clivealive

Thanks again clive alive

JanD236 profile image
JanD236

As well as the supplements which clivealive has mentioned in his reply it’s also worthwhile consciously trying to keep your intake of folate from food high.

Fortified breakfast cereals, leafy green salads and veg, broccoli, peas, chickpeas and orange juice to name a few good sources. Plenty more on google. I try to include something containing folate in every meal.

pvanderaa profile image
pvanderaa

I take 6x 800 mcg to get 4.8 mg of folic acid daily. I take 2x when I get up, 2x at noon and 2x at supper. This smoothes things out. I also supplement with methyl-b12.

Are you B12 deficient as well?

fbirder profile image
fbirder

The body does not store folate to any appreciable extent. So the fact that your levels are dropping after a course of high-dose supplements means that you're not absorbing enough.

The only way to increase your levels is to increase the amount of folate you consume. You can do this by increasing the amount in your food by eating lots of leafy green veg, nuts, seeds and pulses. You should also take a supplement. 400 mcg a day of a supermarket folic acid should be plenty.

Don't be tempted to take ridiculously high amounts of folic acid. The 5 mg tablets your doctor gave you are designed to 'fill you up'. Once that's been done the 400 mcg will keep you topped up. Some people (especially those on a Facebook page) seem to think that you need 5 mg a day if you're injecting B12. They are wrong. They may be dangerously wrong, as there are doubts about the safety of folate at such high doses over long periods.

JoannePA profile image
JoannePA

Thanks very much everyone for your advice on diets and to fbirder for how it might work I think I will keep it in mind with my diet and buy some tablets at the supermarket and hope that works out well. Now I have my b12 deficiency under control hopefully this will be soon too :-)

Barbaraj profile image
Barbaraj

No one should be taking folic acid at all! Up to fifty percent of people are unable to process it due to a genetic mutation (MTHFR). Supplementation should be in the form of methyl folate which is the readily available form of folate & doesn't require enzymic action like folic acid does. Check out Dr ****** & folic acid on YouTube. Folic acid blocks cell receptors when the enzyme methyltetrahydrofolate reductase is impaired as is the case in the MTHFR mutation. Thus blood levels of folate may rise well above normal but that is not an indication of what is happening in the body's trillions of cells.

Note: name edited out by admin

fbirder profile image
fbirder in reply to Barbaraj

1. Over 99.5% of people have some sort of MTHFR mutation. Surprisingly enough, none of them have a problem with folic acid.

2. About 9% of people have the one, and only, type of mutation know to possibly cause a problem (homozygous for C677T). This mutation doesn’t mean that those people are unable to process folic acid. It means that their conversion of methylenetetrahydrofolate to methylfolate only works at about 30% efficiency. Most people just make more of the MTHFR enzyme. Some of these people might benefit from supplementing with methylfolate.

3. Methylfolate is not the ‘readily available form’. The folate in food tends to be dihydrofolate, which also needs to be converted to methylfolate by MTHFR (and other enzymes). Folic acid is easily converted to dihydrofolate by dihydrofolate reductase.

4. ********* If you want to see something on YouTube I suggest this on methylfolate youtu.be/MzT-iU8UIwo

5. Folic acid does not ‘block cell receptors ‘. *****

Admin note: some comments on this response have been redacted to remove confrontational elements

Barbaraj profile image
Barbaraj in reply to fbirder

May I politely suggest that you refer to the scientific literature? Folic acid is banned in Scandinavia - has been since ten year study (following sequencing of the human genome) which found an exponential rise in bowel cancer since the inception of food fortification with folic acid.

sciencedaily.com/releases/2...

fbirder profile image
fbirder in reply to Barbaraj

"Experimental evidence suggests that folate deficiency may promote initial stages of carcinogenesis,

fbirder profile image
fbirder in reply to Barbaraj

Folic acid is not banned in Norway.

If you type 'folic acid norway' into google the top hit is - nutraingredients.com/Articl...

Where they start off with -

A high intake of folic acid does not cause cancer so current upper levels and maximum amounts for the vitamin should stay the same, says the Norwegian Scientific Committee for Food Safety (VKM).

Their upper limit for folic acid is 1000 mcg per day.

Here is their 2015 study. vkm.no/english/riskassessme...

Barbaraj profile image
Barbaraj in reply to fbirder

ncbi.nlm.nih.gov/m/pubmed/2...

fbirder profile image
fbirder in reply to Barbaraj

This review found insufficient documentation to conclude about cancer risk for fertile women that are recommended folic acid periconceptionally in order to reduce the risk of neural tube defects.

Barbaraj profile image
Barbaraj in reply to fbirder

I'm only trying to help & pass on knowledge. Of course, as in any study, there are contradictory results - I tend to err on the side of caution & would advise that if folate levels are low then supplementation should be with methyl folate & not the man-made chemical folic acid. I don't wish to argue about it at all & you are free to make your own choices in life.

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Barbaraj

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Foggyme profile image
FoggymeAdministrator in reply to Barbaraj

Barbaraj. Just for practical clarification...

It's not correct to say that nobody should take folic acid (as you suggest above). Some people react very badly to methylfolate, so it doesn't suit everybody. For the majority of people, folic acid is perfectly adequate (though some do benefit from taking methylfolate instead).

So...the 'best' form of folate is the one that works 'best' for the individual (worth noting here that methylfolte made me feel very ill indeed).

If anyone is considering trying methylfolate, please be aware:

1) methylfolate dosing regime is different from that of folic acid

2) always start on a low dose (200mcg) and increase the dose slowly (especially important if case you are one of those who happen to react badly to it).

3) do not start on 5mg doses, even if you have a proven folate deficiency. Starting on 5mg of methylfolate will make you feel very ill indeed

4) research side-effects first (common ones are feeling 'jittery' or 'hyped' and insomnia...but there are many others).

5) if you feel worse after commencing methylfolate...stop taking it (sounds like common sense but it's too easy to assume that something else is the cause).

6) note of caution - methylfolate is also used for the treatment of some medical conditions - doses given in the attached link below are much higher and are given under medical supervision and therefore not suitable for maintenance purposes.

7)methylfolate may interact with other medications, vitamins and herbal supplements. If you are taking any medications (or other supplements), please check for potential interactions. If in doubt a pharmacist or GP can check your medication / supplement regime for you (pharmacists are often more knowledgable than GPs).

8) do not take any form of folate (methylfolate, folinic acid, or folic acid) if you think you may have B12 deficiency too (it will mask the presence of B12 deficiency and potentially allow neurogical damage to progress).

Methylfolate does interact with quit an extensive range of medications, some of which are likely to be taken by at least some of you. Here’s just a few (the list is not exhaustive):

capecitabine;

fluoxetine (Prozac);

isotretinoin;

methotrexate;

methylprednisolone;

pancrelipase;

pyrimethamine;

triamterene;

trimethoprim;

warfarin (Coumadin, Jantoven);

birth control pills;

oral diabetes medicine that contains metformin (Glucophage, Avandamet, Metaglip, and others);

NSAIDs (nonsteroidal anti-inflammatory drugs)--aspirin, ibuprofen (Advil, Motrin), naproxen (Aleve), celecoxib, diclofenac, indomethacin, meloxicam, and others; or

seizure medicine--carbamazepine, lamotrigine, phenobarbital, phenytoin, primidone, valproic acid.

[details extracted from drugs.com/mtm/l-methylfolat... Note: the dosing regimes here are high and are most relevant for the treatment of other medical conditions - they are not suitable for 'maintenece' therapy]

Also worth stating that there is much mis-information and hype about methylfolate on the internet - usually on sites that are selling it (and often a whole host of other supplements too).

So...be safe and do your research first....and it's always best to look at NHS or medical reference sites, medical journals and peer reviewed research papers etc., rather than sites that sell methylfolate (there's a whole industry built on and around methylfolate).

Just saying because...well...the folates can be complex! 😳

If in doubt or confused by the for / against criteria, consult with a pharmacist or GP (they will advise in line with current medical history and medications etc.). 😉 😀

Cherylclaire profile image
CherylclaireForum Support

I have been taking folic acid for over a year, because my levels although not out of range were always hovering at the low end... so why wait ? Especially when hair is falling out, gums bleeding and mouth sore and splitting at corners. GP gave me 3 months of iron and folic acid which brought levels up but after a few months, would be back down at the bottom end. Now I take 400mcg of folic acid, plus the 400mcg in my multivitamin and mineral tablet daily.

After over a year of this, my folic acid is back up, so I might try just the multivitamin alone, which gives a recommended daily dose, and see if I can maintain level. Iron also improving slowly. It has taken a long while- because of B12 deficiency, low levels of iron and folate initially, and daily diarrhoea. Hair seems to have stopped falling out, gums have stopped bleeding, but mouth still split and sore (off and on for 10+ years now)- I believe this symptom to be more related to my B12 status.

Most people probably would not need double the daily dose of folic acid to stabilise levels, and eliminate symptoms, especially when self-injecting B12 every other day. Don't think I'm "most people" though !

Best thing to do is to work with GP: get yearly blood checks to see what is working for you, start off LOW and work upwards, until you get it stable.

People have told me to aim for the top 1/3rd of range, but even with GP prescribed 3-month course, have never managed to get iron that high. Folate however is currently >20, which is top of the range/ over. Happy with maintaining that.

Gambit62 profile image
Gambit62Administrator

JoannePA - apologies - I have edited some of the comments on this thread which breached forum and HU guidelines in respect of naming individuals

JoannePA profile image
JoannePA

Thank you foggy me and no worries Gambit

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