Folic Acid: I am SI daily and thought I... - Pernicious Anaemi...

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Folic Acid

smg1950 profile image
36 Replies

I am SI daily and thought I was taking 5 mg Folic Acid but realised I am taking 500 ug-not the same amount?

Looking on line I can’t see any with that amount. Could anybody recommend a brand if that’s allowed please?

Thank you

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smg1950
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36 Replies
jade_s profile image
jade_s

I think in the UK it is prescription only. At one point I was taking 12 capsules/tablets of 400mcg. If yours are 500mcg, you would need to take 10.

But are you *sure* it's 500mcg, because normally they come in doses of 400 or 800mcg. Or is it part of a multivitamin?

smg1950 profile image
smg1950 in reply to jade_s

sorry 400ug so to get to recommend ed level for daily SI B12 would need to take around 12?

jade_s profile image
jade_s in reply to smg1950

Yes, but it depends on whose recommendations. The recommendation on this forum (and most governments) is 400mcg. This is not enough for some.

One of the facebook groups recommends 5mg. This can be too much for some.

Lots of conflicting info. My personal opinion is that you have to take what whatever works for you. Lots of people will say you "should" or "must" do one or the other, but, well, let's just say lots of people have been hurt by BOTH recommendations. I'm not medically trained.

helvella profile image
helvella

500 ug - that is, 500 micrograms - is one half of one milligram.

That is, one tenth of 5 milligrams.

Most UK over the counter folic acid is 200 or 400 micrograms.

Technoid profile image
Technoid

5mg Folic Acid is prescription only because its 25 times the RDA (200mcg Folic Acid == 400mcg DFE (Dietary Folate Equivalent). Injecting B12 more frequently will not consume proportionately more folate. 5mg Folic Acid may make sense if you are deficient or have some metabolic issues that cause problems with your efficiency of conversion of Folic Acid (although a high dose might then cause large amounts of unmetabolized folic acid, which may raise its own health concerns.) Some people do find a large folic acid dose such as this works for them but I would be wary, as folic acid does not have the same safety profile as B12 in terms of the effects of excess intake. The tolerable upper limit for folate is 1000mcg (1mg), so 5mg daily is 5 times the upper limit.

ods.od.nih.gov/factsheets/F...

smg1950 profile image
smg1950 in reply to Technoid

Thank you. Did you SI everyday at the beginning . When you injected did you take folic acid?I know everyone is different I just feel a little at sea here. Thank you

Technoid profile image
Technoid in reply to smg1950

I cannot SI due to hand tremor. But I had twice weekly injections when I started treatment. I was taking 5mg a week (not daily) and my folate went well over range within a few months. I felt much better when I dropped the supplement to 400mcg daily and then 200mcg a day. I have no absorption issues and my diet is folate, folate and more folate.

smg1950 profile image
smg1950 in reply to Technoid

thanks for advice- much appreciated

Nackapan profile image
Nackapan in reply to smg1950

Only supplements if a blood test says deficient. 400mcg daily advised by the NHS foe child bearing aged women. .

To avoid birth defects.

5mg is prescription only short term if needed

smg1950 profile image
smg1950 in reply to Nackapan

thank you

Natural1970 profile image
Natural1970 in reply to Technoid

I stopped taking daily 5mg Folic. I was beginning to feel pretty bad. Could I take one 5 mg folic tablet and another 5 days later? I have been taking now for well over the three months period but my doctor seems to think it's ok. Currently taking 2000mcg B12 per day and on 3 month Methyl B12 injection.

Technoid profile image
Technoid in reply to Natural1970

Bizarrely, many doctors dont seem to care how much folate you take and are seemingly clueless about any adverse effects. But ironically they get VERY excited if too much B12 is taken, which, unlike folate has no tolerable upper limit. My own overrange folate result was not flagged at all, I had to specifically inquire about it and when I did, no particular concern or interest was expressed about the clearly overrange result.

If you are not folate deficient, have no issues with folate absorption or conversion, folate labs are good and you're a few months into treatment, there no obvious reason to continue with 5mg a day unless you feel that you do a lot better on it. Beyond specific circumstances like I mentioned, which your doctor should be explaining to you if they exist, there's no clear medical or physiological reasoning behind continuation of such a dose.

Even 5mg every 5 days is still right at the tolerable upper limit - why not check your folate labs and see what that result looks like? Blind supplementation at super high dosages of something which does have an upper limit for dosage is not really wise. I don't put a lot of stock in doctors concern or lack thereof since my experience is one of misdiagnosis and doctors being concerned about exactly the wrong things (B6 overdoses etc) while prescribing unsafe dosages of other things without much concern or consideration to the patient's situation and symptoms.

I first began to experience neurological symptoms and went to a doctor suspecting a B12 deficiency after approximately 5 years of taking a lowered dose of B12 of 250mcg a week (8 times less than the minimum dosage). Supplementation was my only source of B12. I was diagnosed as having "overdosed" on B12 while taking 8 times less than the minimum requirement. Because of this "overdose", I was then advised to take 250mcg a month of B12 , which is 30!! times less than the minimum biological requirement. No nutritional authority on earth recommends such a dosage amount or frequency of B12 as being safe if it is the only source.

The result of my blindly trusting and following their advice was a predictable deterioration of my condition and onset of further and more severe neurological symptoms over the following 2 years.

My assumption that my doctors knew what they were doing and would not recommend something unsafe was a mistake that led to what is now likely permanent neurological damage.

If your doctor can't explain to you why you should take 5mg a day that should be a red flag. Likewise if its a nonsense explanation which doesnt fit with your lab results. Do not trust blindly. Check if the explanation makes sense, the dosing makes sense and make your decision with all the information you have including how you respond to the dosage and what is widely agreed by the best scientific research to be a safe or unsafe dosage.

Natural1970 profile image
Natural1970 in reply to Technoid

Thank you for the detailed reply. The doctor did say i had stacks of folate on board. So this made me question recently should i continue. The reply was quite like, well it's upto you. So i have now stopped the folate and I'm now not going to do self medicating idea of 5mg once every 5 days. I was about to start today but thought I would wait on your opinion. I now have 2000mcg Methyl B12 a day along with my bi-monthly B12 injection. I've just had a blood test done and waiting on the result especially folate levels as now it's been two weeks since I have taken folate tablets. Thanks for your opinion on this. Has helped me tremendously.

Gambit62 profile image
Gambit62Administrator

As above 5000mcg is the dose for treating a deficiency and is used for a period of 2 months.

although a B12 absorption problem can affect absorption of other micronutrients, including folate, it doesn't actually affect the amount of folate your cells need.

In general taking doses over 1000mcg on a regular basis is not recommended as it has been linked to problems using B12 in cells because it can trap the B12 in the wrong form (the folate trap).

I would not recommended taking a dose of 5000mg a day unless it has been recommended by a medical professional.

smg1950 profile image
smg1950 in reply to Gambit62

thank you

Miss-guineapig profile image
Miss-guineapig in reply to Gambit62

Thank you for this Gambit, I have just posted a new post question re folate but you have answered my question here. I am going to speak to my GP next week as I was prescribed 5mg every day. I did question the dosage after reading posts on here, and was changed to 5mg every second day. I now I have a different GP, and I will certainly be asking again next week. Thank you

Cherylclaire profile image
CherylclaireForum Support

When, after starting B12 injections, my ferritin and folate were low in range, I was given 3 months' treatment for both. Although both were then measured at good levels, they dropped again rapidly. I started taking supplements myself to stabilise both at better levels, with my GP monitoring with regular blood tests.

It probably took about 2 years to get that stability. Folate seems better in top 1/3 of range. GP said that ferritin below 60 ug/L can cause symptoms, my oral medicine consultant preferred ferritin level to be over 80. To get that level was hard work !

I self injected B12 every other day for a couple of years, then reduced frequency to about two a week. This seems to keep symptoms under control generally. My GP diagnosed functional B12 deficiency fairly early on, and ensured that I was given two injections of B12 a week. This continued for 6 months. The plan was always to reduce this eventually to once a month for life, but I found I could not manage my symptoms at this frequency.

Generally, if my hair falls out and/or gums bleed, folate or ferritin is low. Good to have visible indicators now that blood tests not regularly done. The most folate I needed was early on- when I took 400mcg singly and another 400mcg as part of a multivitamin. Usually just 400mcg daily was enough. I do not need to supplement either folate or ferritin now as bloods have all improved gradually.

5 mg daily sounds too much. Folate, unlike B12, can cause adverse effects at high levels. From what I understand, these can seem similar to B12 deficiency symptoms - which is why I was quite glad to have a GP checking my levels. She did not check B12 as pointless -she expected that to be high.

5mg might be prescribed by a GP for short-term treatment if very low in folate, but would be stopped and level retested.

smg1950 profile image
smg1950 in reply to Cherylclaire

thank you

Miss-guineapig profile image
Miss-guineapig

I seem to be one of the ‘different’ people here re folic acid. I was prescribed 5mg daily when first diagnosed and this continued for quite a few years. I discussed my dosage with my GP about 2yrs ago following comments on this page…As I respect and trust many peoples view. She advised to take 5mg every second day following my blood tests. So that is what I do for now and I have to say I was self injecting every 4 weeks but now managing 8 weekly. I have been very well for a long time now….allow recently developed gastric issues which are being investigated. Hope this helps smg x

smg1950 profile image
smg1950 in reply to Miss-guineapig

Thank you for your thoughts. It does show how everyone is different

humanbean profile image
humanbean

Did you know that no human had ever taken folic acid before 1943?

Some info on folic acid (which is synthetic), and methylfolate (the form of folate found in some foods) which might be of interest and is worth reading :

takecareof.com/articles/ben...

chriskresser.com/folate-vs-...

healthline.com/nutrition/fo...

Methylfolate can be bought without prescription from many sites selling supplements. Some of them contain eye-watering doses e.g. 15mg, which I would avoid. But I have seen 5mg (5000 mcg) dose methylfolate on Amazon in the past.

Personally, I would avoid folic acid like the plague and in recent years have only ever taken methylfolate.

smg1950 profile image
smg1950 in reply to humanbean

Hi I know nothing about methylfolate. My folate serum level before B12 jabs was fine. I'm not feeling great on daily jabs and think may have upset my IBS. I've been told to take V8 juice to keep up potassium levels but I think this has also upset my IBS! I'm going to try and let my tum settle down before adding anything else to my body!

humanbean profile image
humanbean in reply to smg1950

The body needs folate in order to make use of vitamin B12. If you had B12 deficiency then got B12 injections your folate requirements would rise.

coat2003 profile image
coat2003

I HAVE ATAXIA, GET YOUR VITS ON PRESCRIPTION, A GP CAN PRESCRIBE HIGH DOSES, INCL VIT D3,NOT ONLY FOLIC ACID...B9 THAT IS.

Frank77 profile image
Frank77

I have PA and have been taking 400 mcg of folate daily for years. I live between Ireland and Russia. Here in Russia the normal tablet size for folate is 1000 mcg. I assume that this is considered the optimal level by local experts - I think it is the same in Ukraine and other countries in Eastern Europe. I have no hesitation in taking 1000 mcg a day when i am here, but dropping to 400 mcg when I am in Ireland- purely as a matter of convenience!

smg1950 profile image
smg1950 in reply to Frank77

really interesting ! Thank you

smg1950 profile image
smg1950 in reply to Frank77

Do you SI B12 on a regular basis?

Frank77 profile image
Frank77

yes, every other day for about a year now. But recently symptoms have returned even on this quite high frequency. So at the moment I SI every day. I use my usual German hydroxo one day and local cyanocobalamin the next - simply because it is available over the counter here and is incredibly cheap!

smg1950 profile image
smg1950 in reply to Frank77

Thank you best of luck

rise3shine profile image
rise3shine

In the UK you can buy 5mg Folic Acid tablets (exactly the same box as what I am prescribed by the doctor) here --> e-surgery.com/product/folic... (and it is cheaper than a prescription too. I buy 3x months at a time. Hope this helps.

helvella profile image
helvella in reply to rise3shine

Only "cheaper than a prescription" in England!

rise3shine profile image
rise3shine in reply to helvella

Oh, does smg1950 not live in England?

helvella profile image
helvella in reply to rise3shine

I don't know. Her profile simply says United Kingdom.

rise3shine profile image
rise3shine in reply to helvella

Yes, so cheaper than a prescription where she lives 👍

helvella profile image
helvella in reply to rise3shine

No. There are no prescription charges in Northern Ireland, Scotland or Wales. Hence only in England would it be less than the prescription charge.

rise3shine profile image
rise3shine in reply to helvella

OK, I didn't realise. I hope the link to the folic acid tablets helps as much as it did for me.

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