I am so worried and so confused now.

[LovesLuna]

I just posted about high B12 blood levels after loading injections, (2000) but now need help with making sense of high folate. Daughter tells me her Gp said her blood folate levels are 1900 ( 1480 being the highest normal reading) and she should discontinue supplements. She has been taking 400mcg methyl-folate daily for about two weeks- Had B12 loading injections 4 1/2 weeks ago. The thing is she has a mouth full of ulcers, seven to be exact, and she feels horrible. I can only find info on mouth ulcers being caused by low B12 and low Folic acid. What on earth is going on. Anyone have any idea ?

[Steap]

As horrible as it sounds, your own ear wax is good for mouth ulcers.

You don't mention taking any other vitamins however a good multivitamin is sometimes needed to compliment the b12. Obviously though a good well balanced nutritious diet always trumps supplements if you can absorb nutrients naturally.

Maybe a short course of corsydl (chlorhrhexadine) mouthwash might help to clear things up.

If mouth ulcers fail to heal within a week or so a visit to the dentist is always the best option.

B12 treatment takes time and it's still very early to be seeing big improvements.

As for the folate I'd follow the advice of the Gp and cut back on the supplements and eat a folate rich diet. You can't really overdo folate obtained from food sources but go easy on foods fortified with lots of folic acid if it's your intention to lower your levels slightly.

It could be that you supplemented folate too close to the blood test as serum folate levels pretty much reflect what you've recently consumed.

I'd only be concerned if folate levels were very high and no supplements had been taken for a while. I supplemented multivitamins with 200mcg of folic acid for four weeks and it put my folate over range.

Admins will have more sound advice though as I'm no expert yet on supplimenting nutrition.

I'm learning too.

[LovesLuna in reply to Steap]

Thanks Steap. Since posting I have been researching the side effects of too much folic acid, and they pretty much mimic what my daughter has been going through the last week - that I was thinking was either low potassium / not enough B12 / or folate deficiency, so was encouraging her to take a multivitamin complex with folate everyday and drink lots of coconut water. I now learn that in fact the effect of too much folate is pretty similar to too little ! Aching muscles, nausea, abdominal pain, skin rashes, oral inflammation, tiredness. I think I may have inadvertently overdosed her. I was following the suggestion from PAS to supplement with folate when having B12 injections, but maybe I started it too soon to the B12 loading therapy before B12 was high enough? They need each other for synthesis don't they ? It was only 4OOmcg of folate, but I realise now that with her diet she was probably getting much more than that. She is super healthy in her eating habits, loads of fruits and veggies and nuts, plus she juices veggies and greens and makes smoothies on a daily basis and of course the grains she eats are probably fortified too. I feel a bit ridiculous now thinking about it, as she no doubt didn't need a supplement, but I was trying so hard to do the right thing to get her well. It's such a delicate balance ! So much to learn, and I can't always get my head around it all. We've taken away the supplements and will continue with her nutrient rich diet and if her symptoms resolve, I guess we will know that the addition of a supplement was too much for her. I read it is excreted from the body quite rapidly.

[clivealive Forum Support]

I think it's always a good idea to have levels checked after supplementation although to test for B12 after injected loading doses is a bit pointless unless it come out very low.

Folate, iron and B12 work together to make red blood cells.

I hope your daughter starts to feel better soon but as Steap says " it's still very early to be seeing big improvements"

[Foggyme Administrator]

Hi LovesLuna. Just a thought...was your daughter taking methyl folate or folic acid supplements?

They are two different types of folate and very few people need to take methyl folate, which can have some very nasty side effects in some people. (Methyl folate is used by some with very specific (but quite rare) gene variations - but I'm not good at that explanation - it's very complicated 😖).

If she was taking methyl folate then yes....over supplementation can cause some rather nasty side effects. I inadvertently over supplemented when first diagnosed and the side effects were very unpleasant - an easy mistake when new to the whole B12 deficency thing.

Suggest your daughter uses folic acid if supplementation is required in the future...but for now, good to stop and maybe get her doctors to periodically test folat levels to ensure not dropping too low.

Hope you daughter feels better soon.

Take care 👍

[LovesLuna]

Yes, it was methyl-folate 400cg - not regular folic acid. I read somewhere that that is the preferable form of folic acid. So methyl-folate should really only be taken by certain individuals , and for the rest of us it causes side effects ? Oh dear,there is so much to learn, and so easy to get it wrong.

[Foggyme Administrator in reply to LovesLuna]

Hi LovesLuna. Yes, methyl folate is only needed in the case of very specific (and quite rare) genetic variations...and with some genetic variations it's actually not advisable at all...it's all very complicated.

There's a lot of 'hype' and misinformation about methyl folate all across the web - usually put there by people who want to sell methyl folate. So it's an easy mistake to make.

The good news is that your daughter should pick up quite quickly once she's stopped taking it 😄.

And you're right...B12 deficency is quite complex and so very far from simple 😖. And no matter how much we learn, there always more to know...for all of us 🙃.

So just keep asking...nobody ever minds how often you post 'cause we're all in the same boat.

Take care both 👍

[maiken]

My mouth ulcers were low ferritin levels (iron deficiency)