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Has anyone else had peripheral neuropathy with high folate?

mbernhardt profile image
11 Replies

I have been having peripheral neuropathy for a few months now. My vitamin B12 has been in range, however my folate level is over twice the upper range of the blood test. My doctor said it is probably caused by my fat malabsorption and nothing to worry about. However, I found this on the internet today; now.tufts.edu/news-releases... Has anyone else run into this?

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mbernhardt
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fbirder profile image
fbirder

If worried get an active B12 test done.

If you have the TCN2 mutation then your active B12 levels will be high (they should be about one-fifth the serum B12].

deniseinmilden profile image
deniseinmilden

Interesting article - thank you for posting.

At the moment I'm needing ridiculous amounts of folate supplement but I am feeling well again for the first time in months. I don't think my digestive tract is absorbing it but I do seem to be getting some into me sublingually. I'm thinking if I'm not absorbing it then I'm probably not overdosing.

Either I've missed something or the article seems to link the two but can't say that the high folate is the cause of the problem or why.

mbernhardt profile image
mbernhardt in reply todeniseinmilden

My take on the article is that it is important to test to know where you are at.

fbirder profile image
fbirder

High folate can be caused by low B12.

One of the forms of folate used by the body is methylfolate. It uses methylcobalamin ( a form of B12) to transfer a methyl group to homocysteine. If there’s not enough B12 then the body has no other way of getting rid of the methylfolate, and the levels rise. All of the folate in your body slowly gets converted to methylfolate which is unusable. It’s called the Folate Trap.

When they test your blood the test detects all forms of folate. But it doesn’t tell them that most of that folate is in the useless form of methylfolate. Other forms of folate are used in other biochemical reactions - like the formation of purines and pyrimadines - both essential for DNA synthesis.

So it could be that you just need to supplement with B12. You could try oral supplements, but injecting will be more certain.

Although it’s methylcobalamin that causes the methyl trap you don’t need to supplement with methylcobalamin. When any form of B12 enters the cell the top ligand (methyl, cyano, hydroxo or adenosyl) is removed. So they’re all identical once the get into the cell.

mbernhardt profile image
mbernhardt

I have been supplementing (orally) for a few months. I think it may be helping.

hamestate profile image
hamestate

yes!! been suffering with cold, numb, tingling feet for 3 years. It started right after my ovaries were removed. My thyroid levels dropped too. Super frustrated.

dogmama2 profile image
dogmama2

I created an account just to respond to this post. My folate is also over twice the normal range, and my B12 is normal. I have been experiencing fairly severe neuropathy for a couple months and have been diligently researching to see if there is a connection between the neuropathy and high folate.

Are you still experiencing neuropathy? Have you been tested for the MTHFR mutation?

mbernhardt profile image
mbernhardt in reply todogmama2

I began supplementing with 2500 mcg of vitamin B12 about a year ago. My neuropathy pretty much went away. My folate came down to around 20 also. This might be something for you to try.

dogmama2 profile image
dogmama2 in reply tombernhardt

Thank you for the quick response. How long did it take before you started to notice an improvement with the B12?

mbernhardt profile image
mbernhardt in reply todogmama2

Can't remember for sure, about a month?

dogmama2 profile image
dogmama2 in reply tombernhardt

Interesting. Thanks again for the quick replies. Glad you found something that helped!

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