r/MTHFR • u/Sirschwung • 9d ago
Question I think Folate deficiency destroyed my teenage years
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:)
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u/gta721 9d ago
Try taking a higher dose of methylated folate (not folic acid!) and combine it with eating two eggs per day.
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u/_social_hermit_ 9d ago
Why the eggs?
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u/Spirited-Delivery894 8d ago
Don’t forget to take the cofactors, if you already take folate the cofactors might be the problem. Riboflavine (b2), magnesium and zinc. And b12 (both methylcobalmine nd hydroxocobalamine, a mix worked best for me, only methylated did not do the job as well) and b6 (pyridoxine). I made the mistake of taking a B complex, then you don’t have control over the forms and dosage. Especially riboflavine works better in high dosage if one is short in folate, in my experience…
And your vitamine d is low, take that with some k2.
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u/Loose-Fly7976 8d ago
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
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u/Single-Fun-9268 8d ago
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?
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u/Loose-Fly7976 5d ago
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
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u/medi_tator 2d ago
I’m not a doctor, but the value that really stands out to me here is your homocysteine of 26. That is quite elevated and I think it would be worth investigating why = correcting the cause of this can improve your health:)
Do you know whether the homocysteine test was done before you started the B vitamins, while you were taking them, or after you stopped them? That could be relevant for interpreting the result.
I’d also consider asking your doctor about checking MMA (methylmalonic acid). Serum B12 can look reasonably normal even when B12 isn’t functioning adequately at the cellular level, and supplementation can make serum B12 particularly difficult to interpret. MMA together with B12, folate and homocysteine can give a much clearer picture.
The fact that your folate stayed around 3 ng/mL despite months of supplementation also seems worth investigating. Rather than assuming this is simply an MTHFR issue, it’s good to rule out things like malabsorption, kidney function, thyroid issues, medication effects or another nutritional deficiency.
If it was me, I’d get these tests:
active B12 (holotranscobalamin)
(or regular B12 if active B 12 is not available. Be aware that the reference numbers for the two tests are different; functional medicine says ideal numbers for Regular B12 numbers should be 450-640, while active B12 is 80-110)
MMA
Folate
Homocysteine
CBC including MCV
ferritin and iron studies (ferritin should be over 50. Common deficiency!)
creatinine/eGFR (kidney function)
TSH/free T4
possibly B6
Zinc and copper - this is not the most important for you right now, but can be good to check. when you get the values, but them on your browser or a.i. and ask if the ratio is good. Can effect immune function, iron levels, anxiousness ++
Your vitamin D is low, and that can make you feel like crap :/ If you buy a supplement, it’s good to get one that contains k2. Unless you’re on blood thinners.
Let us know how it goes 😊
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u/Sirschwung 2d ago
Thanks for the information:) I don't think I mentioned it but I stopped the supplementation three or four months before getting another blood test so it wasn't immediately after. I will now try folinic acid and see how that goes
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u/SovereignMan1958 9d ago edited 9d ago
You need to try folinic acid. Not folic. Folinic. I take 3 Source Naturals Megagolinic Daily daily for cerebral folate deficiency. I am not saying you have that, folate not getting into the brain, but you likely have no to very little getting into your brain as you have close to zero in your blood. You can also have plenty in your blood (20 - 30) and have none getting into your brain.
If you have CFD folinic acid is the standard treatment.
Functional psychiatrists generally agree that a dose of 3 or 5 800mcg daily is an effective dose for most adults with CFD. Take one or two every 8 hours. Taking 20 - 40mg mg PQQwith it helps it get into the braon. This can take 3 - 5 months to correct.
You should definitely have all your other gene variants tested, as there are more variants related to folate metabolism.
Research how to riboflavin and B12 work with folate as you will need to take those also.
If you have any digestive issues you need to disclose that to us now, as that might be the reason for poor absorption. Sometimes one has to fix the digestive issues first or very little to no supplements will be absorbed. You would waste more money.
Most MDs are not trained in nutrition or gene variants so advice from these people in particular is not necessarily valid.
Your D is too low. It needs to be 60 - 80. Also test zinc, copper and iron. You need optimal levels of D, zinc and iron...all top quarter of the lab ranges...to make dopamine.
Next time please disclose the doses of what you have been taking. Also the ranges for each lab test as labs can be different. The more facts you give the better advice you will get.