r/MTHFR

so this might be kind of a long shot, but has anyone else every experienced this kind of anxiety before? i've been having the worst spells of anxiety in my entire life (especially health anxiety). i can barely get out of bed sometimes, i can barely sleep, i constantly have a lump in my throat feeling, i get so anxious my vision goes blurry, my limbs tingle, i feel like my life is ending. its so hard. i'm struggling. about 2 or 3 years ago i got diagnosed with the mthfr gene mutation, (i was going through basically this same thing, tho i barely remember. it was months until i was diagnosed, so the entire 5-6 months is basically a blur for me.) when i got diagnosed, i was also low on vitamin d (about 17 when i was supposed to be at a minimum of 30) and i cut out folic acid, got put on vraylar, and took vitamin d supplements. within what felt like days (maybe im wrong) i felt completely normal again, like a new person. unfortunately i was stupid, and like 5 months after eating like normal i started to eat bad again, and lost my meds due to insurance issues. i was completely fine for a long time, like 1-2 years. but recently i moved, and all of a sudden its hitting me again, hard. i stopped eating folic acid completely a month ago today. but i'm still feeling absolutely horrible. i just got bloodwork done, everything was perfect, im healthy. but cholesterol was a tad high, and my vitamin d was at 21, so lower than it should be. i just got put on a supplement, once a week for vitamin d. i started two days ago. i haven't gotten vraylar yet because it has to be approved by my new insurance, so it's taking a hot minute unfortunately. they gave me a different med for the meantime. it's helping i think, its only been a few days. but today was a bad day. it just scared me. i'm scared it won't fix this time, im doomed, and it's karma for me taking my health for granted and eating like shit again. i'm so scared all the time, i constantly feel like something's wrong with my body and i spiral and it's been a cycle. if anyone has EVER experienced anxiety like this, how long did it take to improve after cutting out folic acid? did you do anything else for it? am i expecting too much and i just need to let my body take its course? i'm sorry this is so long. i'm scared.

I cannot do too much high protein / meat / sulfur foods; but when I was more vegetarian I my gut health and mood was great but I felt overall too weak even with supplements and like I wasn’t methylating properly.

Eating meat makes my gut health worse but makes me feel much stronger / better, I instantly lose weight.

Has anyone resolved their issues by changing their diets ?

TL/DR: How do I test for excess folic acid vs. non-celiac gluten sensitivity?

I do have problem versions of MTHFR genes. I can dig out my genome if anyone wants to know which version.

Around 1998 (approx. when US fortified foods law went into effect) I started developing fatigue and chronic pain. I also had several first trimester miscarriages. In 2000 a friend suggested I try a gluten-free diet and I went on to have a successful twin pregnancy. I know I took pre-natal vitamins but I don’t know what kind of folate they contained or how much. I continued with the GF diet in part for my own heath concerns but also because my then spouse realized that he had true celiac due to feeling better on a GF diet.Approximately a decade later, I started drinking several Emergence-C vitamin packs per day when I had a cold. I continued because I thought I was doing something healthy but I was feeling worse and worse and even losing weight because my stomach felt so bad. The Eight Most Common Allergens Labeling law came into effect and Emergence-C suddenly started labeling the small amounts of wheat that were in its raspberry flavorings (the one I preferred). I stopped drinking Emergence-C and recovered. At the time I was not aware of my MTHFR genetic variants. Emergence-C still does have a large dose of folic acid and I had been drink 2 or 3 glasses per day.

FYI, Emergence-C no longer adds wheat to their products although I don’t know if it’s ok for celiacs.

I don‘t react to small amounts of wheat/gluten on the rare occasions that I accidentally ingest it. For example, a full meal of something with small amounts of wheat in ingredients list or even an accidental bite of wheat bread or pasta.

There’s recent research on the negative effects of excess folic acid so that made me wonder if I really do have a problem with gluten/wheat or if my problem is with the excess folic acid found in all US enriched grain products.

Anyway, I’m trying to come up with a plan to test whether my problem is excess folic acid or actually gluten/wheat.

My thought is to first get a blood test for folate levels as a baseline (I do take a daily bio-available folate supplement) and then switch to a folic acid supplement and see what my folate blood levels are. If the folic acid is not being properly metabolized then I should see a rise in my blood folate results (my understanding is that the test measures all forms of folate including folic acid)

I know doing this won’t answer the question entirely. The next step would be to start eating non-enriched wheat products and see how that affects me.

I still wouldn’t be able to eat most US products but the idea of being able to go to a country where they don’t enrich their grain products and be able to eat the food is making me giddy! Or drink a real beer maybe!

So does anyone have any thoughts on how long I should supplement with the folic acid before testing to see if it’s building up in my blood?

edit: yes, I know about all the bad things that folic acid can do. I’m doing a small experiment with just myself to see if I’m truly gluten intolerant. I realize that I will likely have symptoms.

edit: I guess I’m hoping for ideas on designing the experiment.

i'd been on prescriptions for adhd, gerd, and chronic sinus stuff for years. they helped on the margins but i still felt like something underneath wasn't right. low-level fog, mood that wouldn't fully lift, sleep that never felt restorative.

last year my primary care doc walked me through a methylation symptom questionnaire from a book that's pretty well known in this sub. didn't do the cheek swab, just the verbal Q&A. he said the symptom pattern strongly suggested an mthfr variant and recommended i try the methylated forms.

what surprised me most was how much of what i'd been eating was working against me. enriched breads, fortified cereals, even some "healthy" multivitamins, all loaded with synthetic folic acid. once i learned that, switching to whole foods and methylated B-vitamins felt obvious.

it's been about 13 months. i'm off all three prescriptions now (not against my doctor's advice, he was the one who suggested the change). adhd-wise, focus is the best it's been since i was a teenager. the sinus stuff resolved on its own. sleep is actually deep. it's not a miracle, it's just the right inputs.

curious if anyone else here was diagnosed via symptom questionnaire alone rather than the genetic panel. and for anyone considering the swap, what was the biggest food change that helped?

I found out I only get 20% of the RDA for vitamin E but I have no idea how to increase this. All foods with the most vitamin E are either high in oxalates/histamine or have a terrible Omega 6 to Omega 3 ratio (sunflower, almond and hazelnut oil).

Only wheat germ seems like a great source. 1 teaspoon has 40-50% of the RDA. Would this be okay for slow COMT and slow MAO? Wheat germ has tyrosine but the amount in a teaspoon should be negligible.

I’ve noticed that increasing my B12 and folate makes me feel more alive, my mood improves, I want to talk to people and do things. But going above a certain point starts causing cramping and fatigue if I don’t have enough electrolytes.

I know people recommend more potassium and that seems to definitely help BUT it causes dry lips, tingling and numbness, and makes me more thirsty if I take more than 2g per day. I have done bloodwork showing low serum potassium in the past but the latest test showed it is now low normal. RBC potassium shows low normal and possible deficiency but there’s not good info on that test.

Magnesium seems to help a lot but can also cause tingling and numbness if taking too much. I take over 950mg per day so I don’t think I could be deficient unless B12 and Folate deplete magnesium too.

I add sea salt to all my food and add an extra ~900mg throughout the day on top of that. I think it helps for the most part since I don’t eat any processed foods with extra sodium.

I add 100 mg of calcium before bed as I barely get any from diet and get low calcium symptoms despite taking 10,000 IU of vitamin D3 per day. I probably only get around 500mg per day total. I am also wondering if I could need more calcium since I don’t get much per day.

What electrolytes should I add more of to help with the cramping and fatigue that higher doses of B12 and Folate cause? I am thinking magnesium may be the culprit but I already take a lot. My body has always had trouble retaining potassium it seems

I'm homozygous for C677T. Used to have homocysteine in the mid-40s. Recurring folate deficiency. Previously B12 deficient and B1 borderline. I'm young, about 30. Cognitive issues would suggest I've had this since childhood, ~20 years.

Been dealing with a lot of bullshit. Profound cognitive issues, dysautonomia (mostly bedbound 2-3 yrs), ataxia, oscillopsia, phantom smells (cigarette smoke mainly), headaches, dizziness, vertigo, bunch of other shit. I could write a book. I've basically had to check out of life for the last 10 yrs.

No one tests for these deficiencies. I only found out because I've been in and out of specialists' offices and one of multiple neurologists was so puzzled by my presentation she had the decency to run a million labs rather than try to convince me this is all in my head which a lot of incompetent asshole *doctors* love to do (I'm sure many of you can relate). What a complete farce.

Good news: I seem to be slowly getting better since supplementing. Emphasis on slowly. It's been 4-5 months now. More consistent energy. Very little dizziness/vertigo. I've heard significant cognitive and autonomic improvement can take a couple of years. I don't expect to make a complete recovery to some hypothetical version of me that never got ill. I just want to be functional within reason.

What I'm ultimately interested in is hearing from people who've been down this road. If you were similarly debilitated, what did your recovery timeline look like?

Hey everyone, so I had a b12 infusion with saline while travelling after having a bad reaction to altitude ( I have POTS and Autonomic failure). 2 days after the infusion I had crazy tremors it looked like I had parkinsons thats how much my body shook. My hr went to 150s while laying in bed which it never has done and Had horrible nausea and a headache. I also could barely eat as would get so dizzy and nauseas and high hr. This was all new symptoms not normal for me.

I had to use a wheelchair for 2 weeks as was so dizzy and faint like, as well as too tremory to walk.

It's been 4 months and while It's got alot better, it's still not good I can barely walk 30 min, I have chronic daily dizziness, and those tremors still happen anytime I start to do activity or even when something excites my nervous system in any way, even eating good tasting food lol.

Blood work shows low potassium (working on that), low folate, normal b12 levels of 500umol, normal electrolytes.

Does anyone have advice or suggestions what I should do or maybe get tested for? Everything I read says it shouldn't last this long and docs don't believe it's due to the infusion but that's where it started, never had those tremors before that.

So I was treating my low ferritin and low copper I was taking iron and small amounts of copper (not enough to matter cus my copper actually dropped even lower) I also took a lot of b12 and folate for about 3 months I have been stuck with adrenaline, sweating, hot flashes, feeling like a stimulant is stuck in my system, no appetite, Nasuea, dry heaving, just feel amped up, restless pacing back and forth. I think I might of gave myself over methylation from the b12 and folate :( I literally have no appetite I have to force myself to eat and since I’m barley eating I feel light headed and dizzy and feel Adrenaline from the low blood surgar feeling. I really am against taking niacin I wanna just get thrush this naturally? Anyone have any advice? If I take magnesium glycinate every night will I be better. I also had some tremor episodes where my body was shaking for hours I took b1 and it helped the body shakes tho. I also have muscle weakness and fatiuge but I belive that’s it’s own separate issue. I have also been feeling weird every day in general just feeling off. I just want this hell to end I want my body to not pump adrenaline through out me 24/7 help :(((( It’s just like extreme physical anxiety every single day I feel like there is like 30 gallons of caffeine stuck in my stomach I feel so amped up, I have been pacing back and forth around the house cus I feel so jittery. I feel scared and alone cus I don’t have a doctor that I can go to who is educated about this. Will I get better will the magnesium glycinate every night starting today help save me. I had a uti few months ago took antibiotics and the appetite and adrenaline went away but then they came back like 3 weeks later but it doesn’t hurt to pee anymore so I don’t think it’s that and my back doesn’t hurt like when I had the uti so I really don’t think it’s a UTI. My stomach has also been bothering me off and on (from iron)

Hello,

My daughter (8 yr) has had difficulty with emotional regulation, sensory processing, executive functioning, mood swings, and adhd symptoms for years now. We’ve been through the gambit of occupational therapy, psychologists, and more recently psychiatrists. One of the psychiatrists had her get a metabolic genetic panel done in order to get a better idea about medication dosing, and we found a homozygous c/c 1298 MTHFR variant. She has a Val/Met type for COMT.

Anyway, we’ve been trying all sorts of things because while she is a wonderful and lovable girl, she also started running away, hitting people, throwing things, and yelling at everyone. I could go into much more detail but things were getting very very bad. The Dr wanted to address her MTHFR variant and said the dose recommendation is 7.5-15mg. We started her on 7.5mg and saw an improvement with everything. So Dr said ok try the next dose up, 15mg.

Only now did I stumble upon this group and now seeing that 15mg is an incredibly high dose. The capsule also has 1,000mcg Vit B12. I called to ask if this was safe and they essentially said it’s fine as long as she isn’t showing side effects.

I don’t think we’re seeing negative effects, but lately she’s been taking longer to fall asleep. I would greatly appreciate any guidance or thoughts you may have on this!

Methylated versions cause extreme overstimulation, insomnia, and impending doom and even single drops of Folinic Acid & Hydroxylcobalamin and Adenosylcobalamin cause less intense but still present symptoms.

I’ve not been able to lower homocysteine one bit through diet alone so not sure what to do at this point.

I'm homozygous C677T and my naturopath put me on 15mg of methylfolate. For the first few days I felt amazing, like a fog had lifted, but by week two I was irritable, anxious, couldn't sleep, and my heart was racing. She told me to push through it but it's getting worse. I stopped taking it three days ago and I'm starting to feel normal again. I thought methylfolate was supposed to help us, not make things worse? What am I missing? Thanks in advance!

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Something that comes up constantly in this sub is the question of folic acid vs folate, and I wanted to write up a clear explanation because I see a lot of confusion, including in many posts that skip a critical enzyme in the pathway.

Folic acid is the synthetic form of vitamin B9. It is found in fortified grains, breakfast cereals, most breads, and many supplements. It is the dominant form in the food supply.

Methylfolate (also labelled as 5-MTHF or L-methylfolate) is the active form your body actually uses. It is found naturally in dark leafy greens, liver, and lentils.

Here is where most explanations get it wrong. Folic acid does not go directly to MTHFR. There are two enzymatic bottlenecks, not one.

Step 1 DHFR (dihydrofolate reductase): Folic acid must first be converted by DHFR into dihydrofolate (DHF) and then into tetrahydrofolate (THF). This enzyme is rate-limited and saturable; it can only process so much folic acid at a time, regardless of your genetics. This is why unmetabolized folic acid accumulates in the bloodstream when intake is high. That problem has nothing to do with your MTHFR status. It happens to everyone.

Step 2 MTHFR: Once folic acid has been converted to THF and passed through further intermediate steps, MTHFR converts 5,10-methylene-THF into 5-MTHF, the active methylfolate. This is where MTHFR variants matter. The C677T variant (rs1801133) reduces this specific conversion step by 30–70% depending on whether you carry one copy (heterozygous) or two (homozygous).

So there are two separate problems stacking on top of each other: DHFR is slow for everyone, and MTHFR is slower still if you carry a reduced-function variant.

Meanwhile, the folate naturally present in food, the 5-MTHF in your dark leafy greens, bypasses both enzymes entirely. It is already in the active form. It absorbs, enters circulation, and goes straight into the methylation cycle without needing DHFR or MTHFR to touch it.

What this means practically:

• Large amounts of unconverted folic acid can accumulate because DHFR cannot keep up, this is a universal bottleneck, not just an MTHFR issue
• Unmetabolized folic acid can compete with methylfolate for the same folate receptors and actually interfere with the methylation cycle
• If you also carry a reduced-function MTHFR variant, you have a second bottleneck downstream making the problem worse
• People in this situation may not only fail to benefit from folic acid supplementation; they may see symptoms worsen

This does not mean everyone with an MTHFR variant should immediately load up on methylfolate supplements. Overmethylation is a real issue (the COMT gene interaction is relevant here). It means the form of B9 in your diet and supplements is worth paying attention to, and that understanding the full pathway, not just MTHFR, matters.

Happy to answer questions. We also wrote a longer piece on this as part of our methylation report blog:

https://noorns.com/blogs/articles/why-so-many-people-start-with-methylation-and-diet-report

hi, i wonder if anyone else has experienced malate as being sedative.I have mthfr - homozygous slow comt and VDR taq. I am trying to to get up to 360 mgs of elemental magnesium through malate. i have tried different times, dissolving in h20 and loading am and pm , but it sedates me, i was floored by other forms of magnesium.I am also on clomipramine 70 mgs for an episode of depression, has anyone else found malate sedating? i presume its the MG acting on GABA and maybe i should reduce dose and build up, any thoughts or advice appreciated 👍

I recently found out I'm MTHFR after low-B12 reading in a blood test and running my 23and Me info through the Methylation Panel. I've been taking the whole slew of supplements that are recommended, in addition to B12 injections.

Today, I was sitting in my yard enjoying some sunshine when I started feeling faint. Everything went white and I ALMOST completely fainted after a few minutes in the sunlight.

I was rushed to the emergency room via ambulance and after several hours, it was determined the only thing wrong with me was my Calcium being too low.

Has anyone else trying to remedy MTHFR had this happen to them or had problems with low Calcium?

I'm wondering if I should quit all the supplements.

TIA!

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UPDATED!! BELOW!!!
I’ve been having really bad OCD and I’m on Lexapro and Klonopin for it. It’s worked for the most part but recently my OCD came out of remission.

I was told by someone close to me that this would help and I tried it last night for the first time and it was a nightmare. Sweating, confusion, brain fog, dizziness, anxiety, just horrible. I went to the ER and they flushed my system and gave me some reassurance. I had to stay with a family member overnight and I slept so much.

I woke up and I feel a bit dizzy and hypersensitive to a lot of stimuli right now.

I only took a single dose. When will this go away?
Should I take my Lexapro and Klonopin as I normally do?
I just don’t know what to do.
Thank you.

———

UPDATE:
I want to thank you all so much for commenting on this post. I did not think that I would get this much support from so many individuals. You all have been nothing but an amazing community and I’m truly grateful 💗 thank you all so much for the guidance and advice

In short, I contacted the doctor on call and they told me to take my Lexapro. I skipped yesterday but as soon as I woke up anxiety up the wazoo and I just took it and Jesus lord I almost feel better minus some sensitivity and minimal brain fog.

Again, thank you all so much for the guidance. I have ordered a B12 test and I don’t know when it will come back, but IM NEVER TAKING THIS AGAIN! After hearing that I was on a HIGH dose I was surprised because that was NOT communicated to me by my relative. I’ve learned a valuable lesson in all of this. ALWAYS ALWAYS consult a doctor EVEN if you are taking a supplement. It’s more than just a supplement.

I’m rambling probably because I’m happy I’m almost normal again, but THANK YOU THANK YOU ALL!!! Much love 💕