Why is folate so important? - Pernicious Anaemi...

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Why is folate so important?

Heidiv profile image
10 Replies

Hi all, could somebody kindly explain to me why it's important to take folate acid or methyl folate when I'm getting B12 shots? I've been told they're important but I don't know what the role of folate is. I am currently having weekly 1000mcg Hydro -shots and have now ordered methylfolate (instead of folic acid)as I suspect I have MTHFR. I am a bit confused though since my dr told me to take the folate only once/week. I am wondering which frequence of B12 shots and methyl folate capsules could be a good regimen. I've had 6 B12 shots so far but without folic acid or methylfolate. The B12 helped hugely through the first 2-3 shots but not anymore now and I got some annoying side effects. So I'm wondering what I'm doing wrong. I'm going to get my homocysteine levels tested so hopefully they might give me more clarity. The dr who gave me the shots until now thinks I'm "healed" because he tested my B12 serum after 5 shots and it was 2000. But I know it's not useful to test B12 serum while supplementing. Any advice or personal experiences would be welcome! TIA!

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Heidiv
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Yachtaction profile image
Yachtaction

Hi Heidi. I'm not a doctor but I have had several years experience with Pernicious Anaemia as it runs in our family. Folic Acid (Vit B9) cannot absorbed by the body unless your B12 levels are correct. So the regimen I use is 1ml Cobalamin shot every three weeks (self administered) and 5 mg tablet of Folic acid daily (Doctor's recommendation). Serum levels of B12 are not a good way of how much B12 your body converts into useable Vitamin. Generally the serum B12 count that the NICE guidelines use as adequate are between 200 and 900 units. I, personally have Anaemia symptoms at 800 and below and have never been below the intervention level of 200. This has resulted in permanent neuropathic damage in my feet and legs. The Folic acid works well and without the dosage I use I have brain fog and a stutter. In your case I suspect weekly B12 shots are too often and it may help to try monthly or even less frequent. After the start up regimen of 3 shots in the first week I went to 3 monthly and worked my way down slowly to 3 weekly and I now have symptoms of no leg power after approx 18 days. Hope this helps.

fbirder profile image
fbirder in reply to Yachtaction

Having low B12 doesn't hinder your body's ability to absorb folate.

Nice guidelines don't mention serum levels. They certainly don't say that 200 to 900 'units' are adequate.

Yachtaction profile image
Yachtaction in reply to fbirder

Read the first line!

Heidiv profile image
Heidiv in reply to Yachtaction

Thank you for responding. It's very interesting to hear what your experience is. I'm sorry to hear that you have permanent neurological damage. I too think my shots were too often. I didn't get my weekly shot today and will take a break of 1 month to see how I'm doing. All the best!

PoDundee profile image
PoDundee in reply to Yachtaction

Try taking taurine to repair nerve damage. It works for me.

fbirder profile image
fbirder

Injecting B12 doesn't increase your body's requirements for folate. But the gastric atrophy that causes PA can also hinder absorption of folate, so low B12 and low folate often go hand in hand.

It is advised that women of childbearing potential should supplement with 400 mcg of folate acid a day. That should be plenty for anybody, especially if they eat a sensible diet.

Everybody has MTHFR, it is an enzyme that converts one form of folate into another (methylfolate). Over 99% of the population have one, or more, mutations in the MTHFR gene that makes the MTHFR enzyme. Those billions of people get by fine.

Only one of those mutations have ever been shown to have adverse effects (and that only in an increase rate of neural tube defects in pregnant women). About 10% of people have that mutation (homozygous for C677T) which makes the enzyme less efficient. Most of those people cope with it just by making more of the enzyme. Some people may find that supplementing with methylfolate instead of folic acid helps.

The only real difference between the two is the cost. Methylfolate is about ten times the cost of folic acid. But some find that £60 a year is worth it.

I always recommend to supplement with folic acid, 400 mcg a day, for a few months. Then switch over to methylfolate for the next three months, then swap back. That way you can tell if there is some obvious difference between the two forms for you.

fbirder profile image
fbirder

As for your doctor saying you are 'healed'. Idiot!

I'll bet he doesn't measure a diabetic's blood sugar, find it normal and proclaim she is 'healed' and stop her insulin.

Heidiv profile image
Heidiv

Thank you, he said "I have enough vit B12 in my body for 3 to 6 years"😱. He also doesn't believe Cyano affects me differently than Hydro and that gastro symptoms ca have to do with B12 deficiency. Didn't realise just how bad a douche bag he was until his last remarks. I really regret trusting another Gp and feeling stupid for hoping maybe this guy was believing me/on my side. Waste of energy. No more benefit of the doubt because it always turns out they don't deserve it.

Gambit62 profile image
Gambit62Administrator in reply to Heidiv

the gut symptoms are probably related to the PA and are related to the damage done which then stops you being able to absorb B12.

If you have a B12 absorption problem then it can affect the absorption of other vitamins and minerals, particularly folate and iron - which would result in a need to supplement.

However, food is the format in which we were designed to absorb micronutrients so its best to try and manage things through diet if possible.

Initially when your B12 levels are restored then a lot of processes that use folate will start rerunning and some will be going flat out to repair damage - this can result in a temporary dip in serum folate levels, but this would only result in a deficiency if your folate levels were low to start off with.

Avoid very high dose supplements - more than 1000mcg of folate - these can cause problems.

Heidiv profile image
Heidiv

Thank you! Yes, I had low levels of folate to start with. So I might have a dip in my folate which could explain why I feel so exhausted and weak. I've ordered methylfolate tablets from a brand that was recommended here (I think 400 mcg) but as my GI system gets upset by most supplements in tablets I also ordered methylfolate sublingual which is 1000 mcg however. So I should be careful with the 1000mcg if I understand it right (maybe take every other day). Thank you so much for your helpful reply!

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