u/Rgrace888

Confused about what type of folate
▲ 3 r/MTHFR

Confused about what type of folate

So I have a bunch of health issues I won’t get into but I’ve known for many years that I am homozygous for C667T and have been on methylfolate 400mcg and riboflavin 400mg daily. I also am homozygous for MTRR A66G. Many years ago I was told I had low B12 and was taking a multi B vitamin (I know bad) and had labs done which showed:

Homocysteine 8.3 (3.7 - 13.9)
Folate 31.5 (>5.38)

I didn’t think much of it and just continued on both of these medications. Then a specialist ordered metabolic testing which doesn’t give exact numbers but deviations in z scores:

Vitamin B6 elevated in plasma and urine
Forminoglutamate AKA FIGLU significantly elevated in plasma
Sarcosine, DMG and methionine significantly decreased in urine

My specialist took my off the multi B vitamin but didn’t really do much else (they are a geneticist so I doubt they would do much else). When I run this through AI it says I have a functional B12 deficiency because of the FIGLU and the decreased methylation markers in my urine with high plasma folate. So I started hydroxocobalamin 1000mg SubQ injections every other day and it’s been pretty hellish. I have small fiber neuropathy and dysautonomia so my nerves are flaring up like crazy and I have lots of anxiety with adrenaline dumps. I kept up with my potassium intake as it’s 4.4 after two weeks of injections. I am going to power through this as I know it’s worse before it gets better.

So my question is I’ve been holding the methylfolate given AI said that I should and it seemed like I should since my level is already high. When I resume it should I go back to methylfolate or folinic acid? Methylfolate never gave me an issue before but it seems like that’s because my body wasn’t processing it since I had a B12 deficiency. I am heterozygous COMT V158M and homozygous MAO-A R297R if that factors into the decision.

Thanks for reading the long post!

u/Rgrace888 — 1 day ago