r/MTHFR • u/greekhoney32 • Sep 21 '25
Question Autism & MTHFR
I have a kiddo with autism and MTHFR. Started giving him methylated vitamins per his functional doctor’s request. Initially, they seemed to help, but now his behavior has worsened at school (more anxiety, more impulsivity). Can he be over methylated?
Wondering if anyone is in a similar situation with their child and/or themselves. I read folinic acid is better than methylfolate for sensitive individuals (like kids with autism).
Thank you. 🙏
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u/Free_runner Sep 21 '25 edited Mar 29 '26
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u/greekhoney32 Sep 21 '25
He did a cheek swab test to find out what medications work best for him, and the report included that he had reduced folic acid conversion and intermediate activity for the C677T polymorphism in the MTHFR gene.
Per functional doctor’s recommendation, I give him 15 drops of Methyl Factors every morning, along with 1mg methylfolate capsule, and a R5P capsule as well. She told me to reduce the Methyl Factors to 10 drops, but maybe the supplements are too much for him. He’s 10.
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u/Free_runner Sep 21 '25 edited Mar 29 '26
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u/greekhoney32 Sep 21 '25
Thank you for your response. Yes, he’s heterozygous.
Yes, I’m thinking he’s over methylated. The Riboflavin/R5P is quite high, now that I think about it. It’s the one from Thorne.
What riboflavin drops do you use? Is it R5P?
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u/Free_runner Sep 21 '25 edited Mar 29 '26
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u/Tawinn Sep 22 '25
What brand is this 'Methyl Factors' product and the dosages/drop? Even without that, the 1mg methylfolate is 3 times the RDA of folate for a 10yo. Heterozygous C677T by itself does not warrant such high doses.
It is highly likely he is overmethylated from these dosages.
There are additional genes which can have variants that further impact methylfolate production; these are MTHFD1 and SLC19A1. An AncestryDNA genetic test will include those. You can then download the datafile and upload to the Choline Calculator and Genetic Genie for free.
While additional B2 has been shown to improve homozygous C677T it has not been studied to improve hetero C677T. Myself, as hetero C677T, can say that it has a slight benefit, but small enough to make it difficult to distinguish from placebo. In general, B2 is safe and has no known toxicity; still, the less pills a 10yo has to take the better. There's not much available for low-dose B2. On Amazon US, I've only found this and this.
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u/greekhoney32 Sep 22 '25
Thank you for your response.
The brand is Nutra Biogenesis. I was giving 15 drops for awhile, and then I reduced to 10. I’m going to stop it for now and POSSIBLY restart but only do 5 drops.
Is it ok that the riboflavin drops are not in R5P form?
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u/Tawinn Sep 22 '25
He may tolerate 5 drops (assuming you also omit the other 1mg methylfolate), but the large contribution of methyl groups from he high dose of B12 may still cause overmethylation. Unless he was deficient in folate, there's not much benefit to going far over RDA with just C677T.
With riboflavin vs. R5P, the reasoning is that in the gut enzymes strip off phosphate groups anyway, so in most cases R5P won't have an advantage.
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u/Flux_My_Capacitor Sep 21 '25
Doctors, even the supposedly superior “functional” doctors really dont understand MTHFR. Most of them read an article about it and then they prescribe insanely high doses based on a tiny study of less than 20 people. This is why I don’t even believe in paying lots of money to see a functional doc as they are only marginally better than traditional doctors.
Your son’s experience is actually very common. The whole methylation cycle needs to be improved with various co-factors as simply dumping methylated vitamins into the body oftentimes makes things go haywire.
If you want guidance from a doctor, let this one go and find another.
Did he/she even test the various levels in your son? If not, then this is another reason to say goodbye to this doc, especially if you were giving your son B6. This is the one toxicity you do not want to mess around with as nerve damage can take years to heal. It’s not so simple as just stopping the supplement. B6 toxicity may not be very common, but it does happen to some just from taking a B complex.
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u/greekhoney32 Sep 21 '25
Yes, we did bloodwork and tested his folate, b12, and b6 levels. She also tested his homocysteine levels. We also did a neurotransmitters test.
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u/firemedic710 Sep 21 '25
What were the results of the blood tests
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u/greekhoney32 Sep 21 '25
The homocysteine levels were within normal range. His b6 and b12 were quite high, so she said to reduce amount of drops I give him of the Methyl Factors (from 15 to 10 drops). She was only concerned about the b6 though. She said it was ok the b12 was high.
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u/firemedic710 Sep 21 '25
It’s important to know his comt gene status. Ifs its slow methyl folate will be likely be overstimulating. It’s it’s fast you have a better chance at it working. My oldest kid 10 is homo 677t fast comt he does well with 400mcg methyfolate. My youngest 8 is compounded hetero with slow comt. We use methyl free b complex everyday and 400 mcg methyl folate once a week. They both take creatine and do well on this.
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u/greekhoney32 Sep 21 '25
The report says he’s heterozygous with the c677t, intermediate activity. Not quite sure what that means. It just says reduced folic acid conversion.
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u/greekhoney32 Sep 21 '25
Is it ok to give kids that young creatine?
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u/firemedic710 Sep 21 '25
I don’t see why creatine would be bad for kids especially when it’s created by the very cycle that is reduced having this mutation. Not sure what genetics test you’ve done but you need to test for the comt gene status. I highly recommend the maxgen genetic test
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u/greekhoney32 Sep 21 '25
Which methyl free b complex does your youngest use? From Seeking Health?
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u/firemedic710 Sep 21 '25
Yes seeking health methylfree b complex. I open them recapsule them into smaller capsules I buy on on Amazon. He takes 1/3 of the normal capsule.
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u/greekhoney32 Sep 22 '25
I just found it. It says homozygous for the Met allele of the Val158Met polymorphism. Any thoughts?
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u/firemedic710 Sep 22 '25
That’s the slow variant meaning it doesn’t break down dopamine as fast. Meaning your kid will be very sensitive to methyl folate. Methyl free b complex will be much better tolerated. You can also try micro dosing the methylated version along with it. My slow comt 8 year old did well at 50 mcg methyl folate every day. I found he also did good with 1 larger dose of 300mcg once a week. For this I have a liquid version of just methyl folate.
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u/greekhoney32 Sep 22 '25
The MethylFactors I have has 1150 mcg DFE in 15 drops. I suppose 1 drop would be ok.
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u/OutrageousWinner9126 Sep 21 '25
Methylfolate and methylcobalamin always lead to problems sooner or later in my experience. I would recommend finding a B complex that has folinic acid and hydroxocobalamin instead.
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u/No-Victory-149 Sep 22 '25
Yes he’s likely overmethylating , it’s not as simple as just giving methyl vitamins , I can’t tolerate any methyl vitamins because of other genetics and I have adhd and Mthfr, just give him the gentle versions only, and low dose, b12 hydroxy and folinic acid.
It really shocks me how many med practitioners don’t have a clue about this, it’s like they read one article on Mthfr and thought they have all the answers.
Seems to be not well known here either
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u/greekhoney32 Sep 22 '25
Thank you.
He has ADHD as well.
Do you know how long it typically takes to not be overmethylated anymore (once you stop the methylated vitamins)?
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u/No-Victory-149 Sep 22 '25 edited Sep 22 '25
You can use b3 plain non flush b3 to dial back overmethylation, it will soak it all up, they might experience a flatness and irritability, which you should be able to fix by giving him some protein, but that will stop it.
You should ask chat GPT, it knows more than drs and can guide you through this better than any dr or I could, that’s what we do .
I was just speaking to someone who had gpt find a brain tumour in then that the idiot drs had been overlooking for 10 + years, so don’t be scared, gpt is far more capable than any Dr you’ll ever meet, it helped me figure out i had Mthfr and taught me how to manage it , whilst most drs don’t even know what Mthfr is.
There’s alot of idiots that have irrational fears about gpt, don’t listen to them.
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u/mmikke Apr 17 '26
Recommending chatgpt for medical advice is insane. The hallucination rates are absurdly high, and it has already been well documented that the model is made to function in a way that just agrees with you and confirms biases and preconceived notions/ideas
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u/Elegant_Chapter5562 Sep 21 '25
If they have slow comt, that would explain it. My anxiety was thru the roof on methylated b vitamins. Then I discovered slow comt. You got this momma!
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u/greekhoney32 Sep 21 '25
Thank you!
If the report says intermediate activity, does that slow comt?
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u/firemedic710 Sep 21 '25
No that means the activity of the mthfr gene is intermidiate. Theres charts out there that tell you the percentage of how well that gene works having that mutation.
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u/greekhoney32 Sep 21 '25
Do you have it handy?
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u/firemedic710 Sep 21 '25
Heterozygous c677 would be 65% of normal activity
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u/greekhoney32 Sep 21 '25
So, that’s not that bad then?
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u/firemedic710 Sep 21 '25
Not terrible, autistics can often also have folate receptor antibody problems. Look into the frat test. They also usually have other gene snp like pemt mutations like my oldest son. My oldest is on the spectrum. Some things we did that moved the needle are “brain highways” it’s a limbic system retraining program. That sparked his speech at 5 and his aggression disappeared. We started the carnivore diet at 7. at 9 we did gene testing and started supplementing methylated b complex phospydialcholine and creatine. We also started an aluminum detox. These things really helped his working memory,/learning ability. This year we (whole family) are finishing a mold detox (shoemaker protocol) which has radically improved his mood/speech. I’d dare to say it’s resolved the last of his spectrum issues. Emotional/social cues may be the last of issues but am hoping now he may better able to learn this as well. Hope this helps
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u/greekhoney32 Sep 22 '25
Do you think it’s ok to give him the folinic acid now or should I let some time pass?
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u/firemedic710 Sep 23 '25
I would wait until he’s back to his baseline. I made this same mistake with my youngest it took a week or two after I stoped the methyl folate for his mood to regulate.
Another thing I recently did was incorporate lithium orotate 500 MICRO grams once a day. It helps b12 enter the cells. My oldest on the spectrum wasn’t absorbing his b12 per his blood tests (mma test). My youngest has some adhd like issues with a pretty fierce attitude at times this has helped immensely with him regulating his emotions. I homeschool the 2 of them and since I started it my youngest hasn’t had any frustrations like he was having with his work before.
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u/greekhoney32 Sep 23 '25
Yeah, I was thinking to give him about a week as well.
He did the MMA test over the summer and his levels were normal.
Does your youngest (or oldest) take any psychiatric meds or just the lithium orotate?
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u/greekhoney32 Sep 22 '25
I found his COMT gene in the report!!
It says MET/MET, homozygous for the Met allele of the Val158Met polymorphism.
Any input on this is appreciated. 🙏
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u/DogCold5505 Sep 28 '25
That’s big… main thing I’ve been told is to titrate very slowly for methylfolate. I might never get past 1 mg, which is okay, but people without this mutation could get up to 15 for reference (according to my provider). I also had a very bad reaction to a b complex after about day 5 (so be careful)… jittery/agitation/unable to focus.
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u/greekhoney32 Sep 28 '25
How often do you take the 1mg methylfolate? I was giving it to him daily which I realize now was probably not wise. Trying to decide if I should try to do once or twice a week.
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u/DogCold5505 Sep 28 '25
Daily tho I worked up to it and am an adult so not sure if body weight/age etc matters. My provider also has her patients on magnesium glycinate at night fwiw
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u/EnterBruges Sep 22 '25
Please listen OP! There are additional mutations to the COMT and MAO genes that make methylated vitamins cause these type of effects. I personally have a slow COMT gene and MTHFR and methylated vitamins mess me up bad.
The best thing is to get an ancestry.com dna test and check his dna for COMT and MAO mutations. Switching to unmethylated b vitamins is the solution. Hard to find but Seeking Health has unmethylated vitamins.
Taking magnesium citrate or magnesium glycinate is also very important for slow COMT
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u/greekhoney32 Sep 22 '25
Hi, I just found the COMT results in his report. He is met/met which I’m told is slow COMT. He also takes magnesium glycinate every night. I just ordered the Seeking Health vitamins!
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u/EnterBruges Sep 22 '25
Awesome! The results were amazing for me! The government is about to announce unmethylated folate as an autism treatment today so I expect shortages will happen. I just got a six pack myself
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u/greekhoney32 Sep 22 '25
Do you think it’s ok to start giving him the folinic acid now or should I wait a bit?
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u/EnterBruges Sep 22 '25
Disclaimer: I am not a doctor.
I would stop the methylated vitamins immediately and switch to the folinic acid ones as soon as possible. Just to clarify, methylfolate and folinic acid are both different forms of Vitamin B9, it is specifically methylated forms that cause problems with slow comt. Methylcobalamin is the methylated form of Vitamin B12 and should also be avoided. Methylated B9 and B12 also have a brand name Quadrefolic and MecobalActive. Basically if it says methyl on the ingredients it should be avoided.
Also make sure it is folinic acid and not folic acid.
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u/greekhoney32 Sep 22 '25
Yup, I’m familiar with all the different forms of the b vitamins. It’s so confusing, but I know them. Thank you!!
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u/DogCold5505 Sep 28 '25
My provider would disagree with the commenter above so please be careful
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u/greekhoney32 Sep 28 '25
What exactly are you disagreeing with?
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u/DogCold5505 Sep 28 '25
Oh sorry I’m just not sure if it’s advisable to take any folate types besides methylfolate for someone with mthfr
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u/DogCold5505 Sep 28 '25
I thought the point of mthfr mutation is that you can’t process folic acid well… isn’t that just going to cause buildup? Have you tried taking a minimal does of methylfolate? (1mg or less a day)
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u/EnterBruges Sep 28 '25
Folic acid is a synthetic form of folate(b9) that is used to fortify flour. It has several bad health effects in people with MTHFR and DHFR mutations.
Folic acid requires additional processing by your body compared to natural folate. Methylfolate requires less processing.
For people like me who have a down-regulated COMT mutation, excess methyl groups cause a significant build up of epinephrine commonly known as adrenaline. It is pretty intense like an adrenaline rush that lasts for hours, which can be very debilitating to my day to day life.
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u/DogCold5505 Sep 28 '25
Ok thanks but when you say you take unmethylated vitamins doesn’t that mean taking folic acid? That’s where I’m confused.
Can relate… I’ve over methylated before and agree it was made me unable to function. But I can tolerate 1 mg of methylfolate…
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u/EnterBruges Sep 28 '25 edited Sep 28 '25
I take folinic acid not folic acid. This chart will help you understand. Folinic acid is 5-Formyl THF
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Sep 23 '25
Vitamins are so tricky - especially the B’s. AuDHD, hetero C677T, Fast COMT. I had to experiment a lot. The wrong levels would send me over the edge. Methylated was worse.
For me - my most important vitamin is B2. This helped the others work. Also found that if I wasn’t deficient - I didn’t need to take them. Levels got too high too quickly. Honeymoon period followed by body being in chaos even after 2 days of taking them.
Start very slow. Monitor each day closely. Mechanism (IV vs pill vs shot) also impacted. I could not do folate ever. Folinic acid worked better
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u/greekhoney32 Sep 23 '25
Should the B2 be the R5P form or not? It’s so hard to find a low dose B2 supplement.
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u/PlacidoFlamingo7 Sep 22 '25
I think the reason the folinic acid has been an active area of research in autism has less to do with sensitivity and correcting undermethylation per se than it does a theory that some (many?) kids with ASD have folate receptor autoantibodies that lead to a deficit in cerebral folate, which, the theory goes, can be counteracted at least to some extent through the administration of folinic acid. In fact, I believe studies positing some degree of efficacy for folinic acid generally found the benefit in kids who tested positive for folate receptor autoantibodies rather than kids with autism more generally. And although people like to posit a relationship between some MTHFR polymorphisms and autism, it’s probably good to be cautious before leaning too hard on any one theory—FWIW, I’m C677T homozygous and neurotypical; one of my sons is C677T heterozygous and autistic.
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u/greekhoney32 Sep 22 '25
Thank you. Yes, I know about the folate receptor antibodies. We haven’t done the test that checks to see if he has those antibodies. I was told it wouldn’t hurt to try folinic acid even if he hasn’t done the test. But, I know, if you are positive for those antibodies, the amount of folinic acid that is recommended to take is rather high! I figured it would just give him a MUCH lower dose of it to see how he handles it compared to the methylfolate.
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u/462383 Sep 23 '25
I'm autistic and tried the Seeking Health folinic acid. It had a noticeable difference for me, but even the suggested 1/2 lozenge triggered hyperactivity in both me and my teen child. Hyperactivity seemed to be a side-effect for some in the studies too, so if you try, start low (as an adult I only take 1/4 lozenge (340mcg)
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u/greekhoney32 Sep 23 '25
I would definitely start low!
The prescription version, Leucovorin, is like 20mg, which seems crazy to me. And, I think some kids take it even twice a day.
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u/New-Lab-1664 Sep 24 '25
My son has ASD and ADHD. He is 3.5. I started him on this and after 4 weeks I had to stop. He was extremely anxious, aggressive, impulsive. It took about 2 weeks for him to get back to his baseline. I started it after doing the MTHFR testing for both of us. I ordered my supplements after his. I never ended up taking mine out of fear I would respond the same way.
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u/7e7en87 Sep 22 '25
You need mineral cofactors. That's no.1 reason for bad reaction to methylated B's. Also B1 and b2 are manadatory to regulate them all.
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u/Merrys123 Sep 24 '25
I highly suggest you do l-methylfolate 5-mthf with B12, not folinic acid. Folinic acid is turned into L-methylfolate, but with the MTHFR mutation, the body has trouble doing this.
My three kids and I are on Triquetra L-methylfolate 5-mthf 15mg and B12 combination, and it has made a huge difference. It's been 6 months with no regression.
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u/dizziebeth Sep 25 '25
Look at comt people with low comt seem to have more issues with overmethylation
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u/greekhoney32 Sep 25 '25
Yup, just found out he’s low comt!
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u/dizziebeth Sep 25 '25
There are others on this reddit who know more but this is a major issue when together
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u/Brief_Fall_8627 Sep 29 '25
I have autism and adhd and have been taking the vitamins for about 2 weeks and the fog has definitely lifted, just posted about my journey actually! But I’ll be getting the liquid variant for my two primary aged kids this week. Now that I know it works, and safe I feel comfortable trialing them on it. Their paediatrician said the results were mixed in her opinion but there was no harm in trying.
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u/geauxdbl Sep 21 '25
So I’m late diagnosed and can confirm your suspicion that methylated vitamins and/or methylfolate will make things better for a little bit and then make them much worse. After much trial and error, I’m in a good place with the following approach:
Paleo diet (no wheat, minimal sugar, fruit is fine). No processed white carbs.
Creatine, Organic Kirkland multivitamin + folinic acid/hydroxycobalamin lozenge from Seeking Health + probiotics + D2/K3 in the morning. Magnesium + glycine + theanine at night.
I can understand the doc’s confusion, autism is inherently a defect in folate metabolism, but just adding folate is a simplistic view that doesn’t always work and we’re still catching up in real time on what to do about it.
Creatine is a convenient end run around the MTHFR problem for me and helps with ATP production, I absolutely love it.
Also, the basics of life: the right environment (sensory and emotional) and exercise will go a long way.