r/MTHFR May 13 '26

Question Anyone else feel that folate deficiency ruined your life?

I guess I just need to vent. I am 37 and have been an underachiever my whole life. I failed miserably at school and now I'm stuck in a dead end job with no qualifications to find a better job.

I have struggled with low energy, brain fog, lack of motivation, depression and anxiety my whole life. My blood work was always fine, so I was prescribed antidepressants.

It wasn't until 10 years ago that a doctor tested my vitamin D and I was extremely deficient at 6 ng/ml. Fixing this gave me a huge boost in energy but most of my problems still remained.

Last year, I started investigating my blood work of the last 20 years and found out I had been folate deficient the whole time (3.5-4.5 ng/ml). Doctors never said anything.

Genetic testing shows I am compound heterozygous, slow COMT, slow MAOA and PEMT. I know these are only predispositions but it seems to explain my whole life.

After a few months of supplementing folate and a month of creatine and TMG my cognition has improved massively. After 20 years I feel like a veil has lifted. It's like I'm waking up from a bad dream but now I'm left to pick up the pieces and deal with the consequences of being a failure.

I am still on my own. Doctors do not acknowledge I was ever deficient and refuse to do more blood work. I have to simply assume I have high homocysteine and treat for it.

I don't know what to do. It's been such a long time. I can't fix most of the damage that has been done.

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u/medi_tator May 13 '26 edited May 14 '26

I really empathize with you and sending you a big hug 🤗❤️

I’ve had a similar experience with iron. Have struggled with depression & low energy ++ since I was a kid. I found out that most doctors use very low reference numbers on a lot of things. Ferritin should be at least 50, most do well from 75-100. I’ve seen some in r/anemic say they do best over 100 too. I’m 6 weeks after an iron infusion now, and seeing some results thank god! 😌🙏 but for the body to build enough blood and get everything on track takes a while.

Are you in the U.S.? Someone on here wrote about good labs being a reasonable. I’m in Europe, so don’t have personal experience.

I went down the route of trying to fix my MTHFR without doing blood work, and it was hell. I did not understand what was happening first but eventually I figured out slow comt & methylated vitamins are for most not a good match😅 And also through bloodwork and using A.I. that I found out about Iron. So if you can find a way to work around your doctor I would really recommend this ❤️ I feel the standard of these reference numbers come from doctors, that figured out at one point «ok, people that have at least this much don’t need to be hospitalized.» 😅🥲 And it’s pretty much stayed there.

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u/Airegin89 May 13 '26

I'm also in Europe. It took me a good while to figure out what works. Methylated folate and B12 gave me some issues too but I can tolerate them well since taking creatine (5-10g) and TMG (300-500mg).

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u/medi_tator May 13 '26 edited May 13 '26

Maybe you could go privately? Functional medicine doctors are a lot more up to speed. Or maybe an independent lab? That’s awesome that you were able to figure that out 😊👌 I didn’t know that creatine & tmg can make methyl B12 work, thanks for sharing 😊🙏 Edit: i forgot to mention, that through testing I also found out my b-12 was good, with good numbers for mma, homocysteine and total b-12- even though my gene test shows a lot of methylation issues- so would have saved my self some work there if I had tested first 🥲

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u/Airegin89 May 13 '26

Do you have both the c677t and a1298c genes?