Folic acid

[Suesue246]

There are groups which recommend 5mg of folic acid daily when on every other day b12 and say that it's essential.Does anyone have successful treatment with eod b12 while supplementing less folic acid than 5mg?

[Sleepybunny]

Hi,

What are your folate levels like?

I don't think I ever took 5mg folic acid but I do use a tablet with rda (recommended daily amount). I use methyl folate and have a folate rich diet.

I don't think I ever had a folate result below range although it was at the lower end of the range when symptoms were at their worst.

[Suesue246 in reply to Sleepybunny]

My folate was around 12 when consultant put me on once a week b12 and once a week 5mg folic acid.When tested 3 months later my folate had risen to over 20. I was then on once a fortnight b12 and 400 mcg of folic acid once a week as prescribed by same consultant.

As I have persistent pins and needles and aches I'm redoing loading doses and maybe I will continue eod b12.

5mg daily of folic acid seems a lot when I'm already over 20 with my folate.

I will next be tested for folate in November.

Can I ask if you do eod b12?

[topazrat]

My folate levels have always been high and I don't supplement it at all. Before supplementing it would be wise to test your levels to see what they are, everyone is different. Its not a one size fits all situation.

[Suesue246 in reply to topazrat]

Can I ask if you take b12 injections eod? My folate was around 12 but increased to over 20 after 3 months of once a week 5mg folic acid with once a week b12.

I'm now prescribed once a fortnight b12 with once a week folic acid of 400mcg, but I'm embarking on eod b12 to try and improve my pins and needles and aches.

[topazrat in reply to Suesue246]

I was on EOD for around 2 months, then dropped to once a week, which wasn't enough, so now I'm stable on twice weekly. At no point on any of the dose regimes did my folate levels drop down into normal range. They have always been more than 24, which is the high limit of my local lab, so I have no idea how much higher they are.

[Suesue246 in reply to topazrat]

Thank you. Thats interesting.

[bookish in reply to topazrat]

My folate was high in range too and started to drop when I started a small dose of methylfolate. Now I have weekly B12 injections (formerly on oral) and still use my preferred moderate methyfolate. If yours was high due to folate trap it could be a methionine issue or the lack of B12. Interesting that it has not resolved yet though. Cheers

[topazrat in reply to bookish]

I assumed it was a folate trap to start with too, but as it hasn't come down on adequate doses of B12, its a mystery, as Toyah would say 🙂

[bookish in reply to topazrat]

Hi, it would appear that the low B12 isn't the only factor applicable to the folate trap though. A chum just sent me this:

THE METHYL FOLATE TRAP: A physiological response in man to prevent methyl group deficiency in kwashiorkor (methionine deficiency) and an explanation for folic-acid-induced exacerbation of subacute combined degeneration in pernicious anaemia

John M. Scott, Donald G. Weir

Departments of Biochemistry and Medicine, Trinity College, Dublin, Ireland

Available online 26 September 2003.

Abstract

It is suggested that in man the methyl folate trap is a normal physiological response to impending methyl group deficiency resulting from a very low supply of methionine.

This decreases cellular S-adenosyl methionine (SAM), which puts at risk important methylation reactions, including those required to maintain myelin.

In order to protect these methylation reactions, the cell has evolved two mechanisms to maintain supplies of methionine and SAM as a first priority.

(a) Decreased SAM causes the folate co-factors to be directed through the cycle involving 5-methyl-tetrahydrofolate (5-methyl-THF) and methionine synthetase and away from the cycles that produce purines and pyrimidines for DNA synthesis.

This enhances the remethylation of homocysteine to methionine and SAM. In addition, by restricting DNA biosynthesis and with it cell division, competition for methionine for protein synthesis is reduced. Thus, whatever methionine is available is conserved for the vital methylation reactions in the nerves, brain, and elsewhere.

(b) 5-methyl-THF, the form in which almost all folate is transported in human plasma, must react with intracellular homocysteine before it can be retained by the cell as a polyglutamate.

Since homocysteine is derived entirely from methionine, methionine deficiency will cause intracellular folate deficiency, and the rate of mitosis of rapidly dividing cells will be reduced.

Although these two processes have evolved as a response to methionine deficiency, they also occur in B12 deficiency, which the cell mistakenly interprets as lack of methionine.

The resulting response is inappropriate and gives rise to a potentially lethal anaemia. In these circumstances the methylation reactions are also partly protected by the reduced rate of cell division.

This explains why administration of folic acid, which induces cell division and use of methionine in protein synthesis, impairs methylation of myelin and precipitates or exacerbates subacute combined degeneration (SCD).

During folate deficiency methionine biosynthesis is also diminished. As in methionine deficiency, the body responds to decreasing availability of SAM by diverting folate away from DNA biosynthesis towards the remethylation of homocysteine to methionine and SAM.

The selective use of available folate to conserve methionine, together with the ability of nerve tissue to concentrate folate from the plasma, explains the absence of SCD in folate deficiency. "

[topazrat in reply to bookish]

Interesting reading. Doesn't sound like there's a lot that I can do about that then, as I take adequate B12 and eat a healthy, balanced diet, so am unlikely to be methionine deficient. I did have megaloblastic anaemia, but that resolved once I was on jabs and a course of iron. I still take a low daily iron dose, as without it my HB starts to drop. Ferritin has a mind of its own, as its around 30, despite eating liver pate a few times a week, but of course the NHS think that's perfectly fine. 😏

[bookish in reply to topazrat]

I must admit, I was thinking the same. It is probably possible to get methionine tested although I haven't investigated. I suppose homocysteine still could be useful, just to be sure that treatments has brought levels down. Cheers

[BirdlessBox in reply to bookish]

Thank you for that information. It ties in with what I posted below trying to point out that the artificial chemical "Folic Acid" is an unwise choice because of the lengthy processing by our bodies and its consequences. If supplementation is needed it must always be a natural form that works well with our metabolisms.

Here is an easily accessible explanation of many of the pit falls; he has more info on his website: realitycheck.radio/replay/d...

The industry has obfuscated the problem by encouraging the terms to be interchangeable in common usage - people do know even realise there is such an important difference between folic acid and folate, etc.

[bookish in reply to BirdlessBox]

It is useful to know that they may not work in the same way for everyone - many are fine with folic, some better with methylfolate or folinic. Much like B12 - some are ok with oral, or ok for a while, some need injections, and the different forms (cyano, methyl, adenosyl, hydroxo) can also be of significance for a variety of reasons. Cheers

[Nackapan]

That information is incorrect. Folic acid dies work together with B12 .

That high dose of 5mg is only prescribed when thd blood test reveals a deficiency .

Short term then a repeat blood test .

A maintenance dose is often 400 mcg daily folic acid .

I personally don't need this.

One of my daughters does.

She had an initial prescription of 5mg .

Short term.only

One size does not fit all

I took 400mcg whist on EOD b12 injections .

3 months later above highest measurement.

My blood test for folate was 5 ( up to 26 in range )

All women of child bearing age are recommended to take 400mcg folic acid daily.

Multuvits usually have this dose.

Folaye deficiency gives symptoms.

Over dosing give symptons .

Ask thd advice giver to produce a medical paper advocating such z protocol

[Orchard33]

I only take 400mg of folic on the day I inject. I inject EOD or three days.

[MindfulSquirrel]

This is just my personal experience.

I started off folate deficient and in two weeks of daily 5mg folic acid my levels had shot to above range. But I did feel good.

When a specialist started me on longer term EOD I was on 5mg folic acid weekly, increased to every 5 days as I would become extremely anxious for the last two days. By my three month bloods I felt awful and deficient again, but those were lost to clerical error.

I started taking 5mg daily. I felt initially better if exhausted but after two months I was a mess, feeling a weird combination of signs of deficiency and overload. My joints were particularly bendy (I also have hEDS) so I was in constant pain, I stopped sleeping again, my geographic tongue came back and it felt like all my serotonin/dopamine was being rinsed (I did find a peer reviewed paper suggesting this could be the case). Both my blood serum and RBC folate were sky high.

So I tried methylfolate but even 800mcg made me feel jittery with joint pain. I stuck with 50mcg of methylfolate and folinic acid on injection days. I got waking up symptoms again and after experimenting with dosage, I stuck with 600-1200mcg, usually the lower end of the scale. I later found out that my MFTHR sequencing suggests that problems with folate processing aren’t unexpected. My theory is that a lot of my blood tests were picking up unprocessed folic acid but I’ll never know for certain.

All was going well until I got COVID again last month, but also a month in to an advised two month break of B6, when I got pins and needles again and my MCV went back up. My folate bloods are definitely more normal though. So I’ve restarted B6 on injection days and am increasing my folinic acid dose to 1200/2000mcg. I’m still experimenting- 2000mg felt too much on the day but the gains the following day seem better.

**************

So tl;dr. It seems 5mg folic acid works for some but it didn’t for me, and finding my right dose has been trial and error, influenced by peer reviewed research I’ve found and symptoms. And maintaining doses change over time. One thing is certain though - I need some form of folate on injections.

[BirdlessBox in reply to MindfulSquirrel]

This may be interesting for you. (I commented more below.)

realitycheck.radio/replay/d...

[MindfulSquirrel]

Just out of interest, did you ask something similar in a FB group recently? I saw a similar post and wonder if it’s you (I gave a much briefer reply there).

[Suesue246 in reply to MindfulSquirrel]

No. I didn't ask that on FB but I do read things there. I notice when questions are asked there, the answers are often just repeating their protocol.

[MindfulSquirrel in reply to Suesue246]

Yeah, it can be tricky. Tbf one group at least tried their best to help work out what was wrong (and accepted something was wrong), and are likewise accepting of me sharing my contradictory experience as long as it’s very much framed as personal experience. But I haven’t had the guts to share my B6 experience yet. 🙈

[Cherylclaire Forum Support]

I did have 3 months of high-dose folate and ferritin prescribed by my GP early on because the B12 loading injections did not help with hair loss and bleeding gums. Both were low but within range: folate at 5.5, ferritin at 46.3.

Both remained a bit wonky for quite a while: my GP monitored both and told me when I needed to supplement, when either or both had dropped again or improved.

Folate was not too difficult to raise for me either, ferritin being slower and more difficult to raise. My GP wanted that to be above 60 ideally, and I managed that a few times but it also dropped to 36. My Oral Medicine consultant later preferred it to be over 80, which I managed once in 2020. This was because he thought it might improve my angular cheilitis (sore, splitting and bleeding mouth especially at corners) and burning tongue. Later, I was told that my burning tongue is due to nerve damage, and likely stuck with it now.

Both folate and ferritin seemed to generally stabilise two years later. Supplementing was mild - just daily multivitamin doses. Monitoring is not so regular now.

Angular cheilitis, by the way, improved within days once treated twice a day with nipple cream (100% lanolin) and now is a rare occurrence - but will still return within days if I stop treatment. [Do not use if allergic to lanolin, which is present naturally in sheep's wool and used in some creams etc].

[Sleepybunny]

Might be something of interest in these links.

bnf.nice.org.uk/drugs/folic...

b-s-h.org.uk/guidelines/gui...

cks.nice.org.uk/topics/anae...

[Ipsofacto01]

I SI once weekly and have been on 5mg Folic Acid every day, prescribed by my Dr for 7 years. I find that when I don't take it I become very breathless. Reading other replies, it's fascinating how different we all are and how complex I guess this deficiency is.

[Wwwdot]

Hi Suesue

After loading doses I was on 5mg folate daily for a while as folate had been low.

I now inject daily and to keep folate topped up I take a folate dose per jab ie 400ug per jab. So 1 jab a day then I take 400ug a day, 2 jabs a day then 400ug folate a day.

I keep mine high. Also keep an eye on potassium, vitamin D and iron as I found these can be affected by rapid healing when injecting frequently.

🤗🤗🤗

[ClaireWF1346]

I inject EOD and take 5mg of folic acid, but only on my injection days. My folate was 4 (5.4 - 24 range) so it was definitely needed in my case. I expect to be dropping down to every 3 day injections soon (blood results pending) and I will also then only take 5mg folic acid on injection days, if still needed.

[BirdlessBox]

There is a lot of information available about folic acid that I think many people are unaware of. This was a hot topic recently where I live as the Gov decided to force medicate the population with it by decreeing its addition to all flour products.

Folic acid in an artificial product that does not exist in nature. It is cheap to produce. The processing it has to pass through in our bodies to be useful is extraordinary. The issues mentioned by Mindful Squirrel may be related to this. I've seen some people say it suits them better but for most it is probably not the best option.

This is a very informative description of the issues:

realitycheck.radio/replay/d...