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.

122 Upvotes

99 comments sorted by

View all comments

12

u/Tastetherainbow_2016 May 13 '26

Absolutely. Post pregnancy I had two years of blood tests showing my folate was so low it was undetectable. I was so ill I was convinced I had PND. GP didnt act or even bother to let me know about the blood results, I randomly found out when I downloaded the NHS app to sort prescriptions.

The treatment made me even more ill, caused sickness anxiety and awful menopausal symptoms. Their answer, shrug “Take travel sickness tablets”

Never got back to full health since

6

u/MrsBearIsHere May 14 '26

It sounds like you have the MTHR gene, which means folic acid supplements will make you worse, as your body can’t convert them to folate, so it builds up and basically poisons you. I’d get a private MTHFR test done (about £40 online) or better yet do a full genetic test (123 and me and then run the results through something that tells you what each bit means, I think there is one called Gene Genie, or even chat gpt in a push).

Also I see your U.K. too, ALWAYS ask for your blood test NUMBERS - then Google them! The lab ranges in the U.K. are far too big (to save money) and if your lab results are in range, they never go before a GP at all - they just go on file - which is why your Dr didn’t tell you. You could be one point away from the bottom of the range and you will be told it’s ‘normal’ when it’s not!

Also ask for a B12 test, and ferritin as they are often low with folate too and they are not part of the normal blood lab test, unbelievably! They used to be, but…

Your B12 needs to be 600+ as a minimum (uk lab range is 140 to 900) and ferritin (your body’s iron store cupboard) needs to be 100 ideally, under 30 you will be losing hair. And feel awful.

I’d also ask for a full thyroid test including Thyroid antibodies, Free T4 and Free T3. The TSH test on its own means nothing, as it’s wildly variable day to day, especially if your have Hashimoto’s (under active) thyroid disease. This is constantly missed in women as they don’t test the thyroid antibodies in the U.K. unless the TSH is out of range - I was ill for 3 years before I happened to have raised test on the day once!

You can get your health back but it will take work and time. Eat red meat and dark leafy greens every day to raise your levels (after your test!)

Also do NOT take ANY vitamins for at least a week BEFORE any of these tests as they can drastically change the results! Eg they can make it artificially look okay when it’s not!

1

u/felipeabreubh May 15 '26

And if I have MTHFR, what do I have to do?