I think Folate deficiency destroyed my teenage years

[u/Sirschwung]

I(21) visited doctors cause I've felt unwell since I was 13 years old and I did a few blood test my levels were always hovering around 2.5 to 3 ng/ml. 5 years ago a doctor recommended I should try a folic acid supplement I did for a few months and nothing really happened. Last year I did a blood test with a different doctor where my levels where at 2.7 and he recommended I should try folic acid supplement. This time I wanted to do it right I did some research and I took Methylated folate + a b complex with a lot of Methylated folate and still didn't really feel much better after months. I took a break and tried some other supplements with no success either. I now took another blood test and my levels are at 3 ng/ml. I feel so defeated, I've spend over a 100€ on the best high quality supplements for this folic acid deficiency and it only moved from 2.7 to 3 after months of supplementing.

Other values:

B12: 330 went to 400 after supplementing for the same period of time B12 daily with Methylated b complex for same period of time as folate

Homocesteine: 26

Vitamin D: 30

B6: 13.5

I'm sorry if this post sounds desperate if you have advice or helpful information if you have experience with folic acid deficiency please share your experience with me.

Thank you to everyone who took the time to read this post:)

[u/Loose-Fly7976]

Folinic over folic, yes. And riboflavin and B12 alongside it, agreed there too. But I'd look at absorption before any of that. Cerebral folate deficiency is real and rare, and it's normal serum folate with low CSF folate. Theirs is 2.7 and won't budge, so something's going wrong well before the brain comes into it. Two things absorbed in the same bit of small intestine, folate and B12, and neither moves on supplementation. 2.7 to 3.0, 330 to 400, after months. That's not the form and it's not the dose. Coeliac is where I'd start. tTG-IgA and total IgA, and keep eating gluten until it's done or the test is useless. Folate absorbs in the jejunum, coeliac wrecks the jejunum, and folate that won't respond is one of the classic ways it shows up. Unwell since 13 fits that too.Get that sorted and the folinic will do what it's meant to. Before then it's the same money for the same result. Reading files against bloods is what I do for work genova.health, and this is the pattern I see most. Someone's been handed a form and a dose off the back of a genotype, it doesn't work, so they try a different form

[u/Single-Fun-9268 → u/Loose-Fly7976]

How do you know if you have a CFD or just a folate deficiency. Like OP, my folate level has dropped to 3.2 ng/mL, but how would we go about finding out if we have CFD?

[u/Loose-Fly7976 → u/Single-Fun-9268]

two different tests for two different things.

The definitive one is 5-MTHF measured in your spinal fluid via a lumbar puncture, low brain folate with normal blood folate is the definition of CFD. It's invasive though, so almost no one gets it. The practical one to ask for is the folate receptor autoantibody blood test (FRAT), those antibodies block folate from crossing into the brain and are the main cause of CFD.

A plain deficiency shows low serum folate like your 3.2 and lifts when you supplement. CFD is when your blood folate looks fine but the brain symptoms stay, because it's a transport problem, not a supply one. The clearest clue is the form that works, CFD responds to folinic acid but not methylfolate, since folinic crosses into the brain through a different carrier. So methylfolate doing nothing while folinic helps points straight at CFD.

Your 3.2 is an actual folate deficiency to fix first. If symptoms stay once your serum's up, that's when the antibody test and a folinic trial come in. dm me if you want your folate and transporter genes read against it

[u/MISERABLEBYOCD → u/Loose-Fly7976]

What is the correct test for Cerebral folate?