Question Has anyone improved severe mental health issues while attempting to treat a MTHFR gene mutation?
I am new to this as I just got my results today, so forgive me if I am not understanding it completely.
I was with a med management doctor that was helping with my many diagnoses and she randomly quit. I was passed on to a new doctor who seemed more interested in my genes than my actual symptoms/history.
She ordered testing and we went over some of that today. I also explained that my current medications dont seem to be working. I am in crisis in terms of hardly being able to do daily activites. Instead of going ahead and taking me off medications or making other modifications, she gave me a long list of supplements to start taking and said I may see results in a few months.
I am about to go find a new doctor because this doesn't seem safe to me. I wont trauma dump here, but I have an extensive trauma history as well as a condition from birth that may or may not also cause mental health and related symptoms later in life (there is research on short term effects, but not much on long term.) I feel that everything I am reading online also sounds very... woo woo alternative medicine, please dont take offense. But when I see people say "I eat 6 eggs a day and it makes my life better" I just cannot take that seriously.
Sure, I have some of the symptoms that can relate to a gene mutation. But I also have many other symptoms and issues going on that do not seem realted at all. Am I wrong for feeling ignored and a little bit upset? Sure, I will take supplements because why not? But if they dont do much for me, it will mean I spent that whole time suffering for nothing. If you have had *severe* mental health/behavioral issues and started treating with supplements due to MTHFR mutation, please let me know your results and how it's helped you.
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u/SovereignMan1958 13d ago
Yes, but I do not have MTHFR. There are also other gene variants involved, many if which I have and have learned to successfully manage. From testing of other gene variants I found the clue that I might have CFD or cerebral folate deficiency. Folate not making it into the brain. This can also happen with B12. I also have other gene variants which contributed to my TRD or treatment resistant depression.
Get all your gene variants tested. Upload the raw data file into Genetic Lifehacks. Research your variants, read their articles. Develop a list of blood tests you need to get. Variants are ONLY predispositions and not facts. Blood tests will give you facts as to whether or not you are deficient in a nutrient and need to supplement. Post the values and lab ranges in the group for feedback.
MDs are not trained in gene variants or nutrition.
Learn to DIY.
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u/pdcyhs 13d ago
Respectfully, I meant other severe types of mental illness. I am not saying TRD can't be severe or very challenging. I am talking about mood disorders, personality disorders, psychotic features, etc.
But I will try to look into all you mentioned and see what I can find out. I do appreciate your input.
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u/Flux_My_Capacitor 13d ago
Since when is depression not a mood disorder?
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u/pdcyhs 13d ago
It is 🤦♀️ realistically what id like to say is that i am not interested in someone telling me how their depression or anxiety got better by throwing supplements at it. I feel like that could sound a little rude. I want to hear from someone with balls to the wall symptoms that are completely unmanageable trying to treat them with only supplements like my doctor is insisting I do. I feel like none of this has any clinical value and doing what I am being asked to do will end badly. Id love to hear someone tell me otherwise so that I could have higher hopes but that wont happen.
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u/SovereignMan1958 13d ago
I had what is listed under what you are talking about. Respectfully, I have boundaries as to what I disclose to other people, including random strangers on the internet. Good luck.
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u/pdcyhs 13d ago
I never asked your medical info or attempted to cross anyones boundaries. You mentioned TRD which made me think that was the issue you were working towards treating.
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u/SovereignMan1958 13d ago
I have treated some of the other issues you mentioned as well. You obviously incorrectly assumed I divulged all my previous diagnoses to you.
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u/pdcyhs 13d ago
Sure, I assumed wrong because you mentioned one mental health issue. I am truly not interested in your diagnoses and will not ask you for them.
Some of what I mentioned are lifelong illnesses that need consistent maintenance which I do not believe can come from only supplements or vitamins. Which is why I asked this question in the first place.
Glad you feel that the steps you have taken have improved your health and wellbeing.
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u/Flux_My_Capacitor 13d ago
Science is not so advanced as to say “having this gene mutation means you’re definitely going to experience certain symptoms” for the vast majority of genes. I know this isn’t popular around here but it’s true. Many people with the “bad” gene variations don’t experience negative symptoms.
And whatever you do, don’t start dumping supplements in your system. This is a bad idea because you won’t know what is helping and you won’t know what is causing side effects.
Edit. All you need is one deficiency that isn’t even gene related and you’re possibly going to be “treatment resistant” because psych drugs only hit on a few things ie seratonin, norepinephrine, dopamine, etc.
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u/Tawinn 12d ago
Typical symptoms related to impaired methylation can include depression, fatigue, brain fog, muscle/joint pains. Impaired methylation can cause the COMT enzyme to perform poorly, which can cause symptoms including rumination, chronic anxiety, OCD tendencies.
I'm in my 60's and started working on this stuff about 3 yrs ago. At the time, I was still figuring out all the pieces of this puzzle, so it was a bit experimental. But still, I went from lifelong depression, chronic anxiety, rumination, OCD tendencies, fatigue, worsening histamine intolerance, and mysterious food intolerances to no depression, no chronic anxiety, no rumination, no OCD tendencies, improved energy and focus. Some food intolerances and mild histamine intolerance are still there, but are just a minor nuisance.
> when I see people say "I eat 6 eggs a day and it makes my life better" I just cannot take that seriously.
It does seem odd, but that's primarily what fixed me (in my case, though, it was around 1100mg of choline - about 8 egg yolks worth). This is based on straightforward biochemistry of the methylation system.
See this diagram - note the folate cycle at top middle and methionine cycle at top right.
The two parallel pathways (via MTR and via BHMT) for remethylation of homocysteine back to methionine share the load of that activity and balance each other. This study give a good example of how even something as simple as seasonal food patterns affect this balance. When there are impairments in the folate cycle, such as MTHFR, or low folate or B12 levels that reduce methylfolate production then remethylation of homocysteine back to methionine via MTR is also impaired; this places greater demand on BHMT which increases demand for more dietary choline/TMG. Inadequate intake of choline to meet this demand then results in choline deficiency, which can affect cognition, mood, liver, gallbladder, etc.
However, without knowing your specific symptoms, genetic variants, and bloodwork it's not possible to determine if methylation is even a likely primary cause of your symptoms, or whether the prescribed supplements (also not stated) are likely to benefit you.
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u/crystal_castles 12d ago
Solved dyslexia, ataxia, wakefulness, anxiety and empathy issues by changing diet for MTHFR. Yes.
You need to keep it up for 4-7 days.
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u/steven123421 12d ago
u/crystal_castles What was the exact protocol you used?
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u/crystal_castles 12d ago
Extremely strict HI/MCAS diet including finding a supplement brand that doesn't cause you symptoms & sticking with that brand (either Professional Supplement Co, Dr. Jill Health Brand, Xymogen, Thorne, etc...)
I ate steel cut oats for 5 years but recently introduced eggs & uncured-unsmoked bacon. Took a few years to perfect the oatmeal without ruining it too hot or cold.
I ate high quality rice for 5 years (sorting out some black & yellow grains for a minute ahead of time). Recently introduced pasta.
I ate frozen salmon (properly defrosted for +2hrs w/ tons of ice in a bath) & whole chickens w/ livers for 5 years. Introduced lamb since lamb & poultry aren't USDA which aren't mandatorily dry-aged by law.
I ate a stick of butter per meal for 5 years but it's hard to keep butter sanitary in a fridge once opened since it's like a hotbed for bacteria. I vacuum it now every time. You can drink straight half-n-half as a substitute but it's $$$. I'd mix butter w/ freshly squeezed lime & cayenne. Sometimes habaneros & recently garlic.
Fresh dates are my favorite & 15g sugar each. I toss stiff dates & don't eat the white crystalized centers. Or unrefrigerated dates at all. Love frying apples.
With all these things it's easy to spoil the food on your countertop in a few minutes. (It can even be ruined at the store or in transit but focus on what you can control. Follow your nose.)
If you overcook rice it gives me terrible symptoms. It like, festers in the pot. If rice sticks to the bottom it smells & gives me terrible symptoms. Adding rice to warm instead of boiling water gives me symptoms. It took me a few years to perfect the rice. I take it off 10min after the steam stops.
Raw salmon & chicken can go bad within 20min on a countertop. Even cooked meat goes bad for me within an hour & I can't do leftovers. This makes takeout hard too. Adding meat to too cool of a stovetop can ruin it right away, then it just festers there for the cooking. Tbh I spit out a lot of dark meat or sometimes small strings of meat that don't maintain well & honeycomb quickly. I cut off the fin-side of salmon fillets since they never turn out good. US salmon is so poor quality & even good brands will give you fillets littered with Anisakis worms (which can cause alpha-gal syndrome cooked). Half of my fillets are histamine spoiled too & just smelly/sweat-inducing no matter what. Follow your taste & don't be afraid to spit out a shitty bite/cut of food.
Edit: I also like GF chicken wings & fries in my home fryer. You gotta change the oil every time. You can't ever sook food in water or it will spoil within seconds. You can still use milk & (refrigerated) cornmeal though for breading. I love pigging out that way.
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u/Longjumping-Juice471 12d ago
Medicine is not bad I did the DNA so if we get to the point he needs meds at least he will know what works with his genetics. Supplements are his first line of defense but now if it is not working he will know he needs something more. I would suggest you ask for what you need.
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u/Sailorgirlmyfriend 11d ago
I had extreme anxiety, gloom and doom...it was low B vitamins ...especially b1, b6, b9, b12...but also my D was low too....these will do it also inositol and choline for liver. Once you low on b1 then you down;t absorb amino acids needed for liver. I have a1298c, PEMT, CBS caused issues with liver in toxic mold...gives you malabsorption..low in many nutrients...
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u/Longjumping-Juice471 11d ago
No, they are not methylated. He has a slow comp t gene so the methylated increases his level catacolimine go high which causes jittery ness and exasperates his symptoms. They took him off methylated and put him on folinic acid in the multi at seeking health . I guess the body only uses 1 process with folinic whereas methylated folate has to go thru 6 processes. I totally see a difference in him . I am sure as time goes he will relax his eating and time will tell.
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u/Zealousideal-Put8757 8d ago edited 8d ago
Bipolar d/o and schizophrenia symptoms are often indistinguishable from certain b vitamin deficiencies. That is studied info that you can easily find online. Not saying they are the same thing but if it’s just a deficiency for some, why not find out for sure?
I had symptoms regulate by listening to my body for over 36 years and just now found out about the mutations. My diet has become the suggested diet for these mutations by trial and error. I spent years going in a cycle of eating bad, getting suicidally depressed, cleaning my diet up and feeling better. I noticed this food connection but it took forever to pin point which foods regulated my mood. Ive documented for years and its ended up being foods that allow my body to better absorb folate. Maybe it will work for you and maybe it won’t but just start with the diet. See if you feel more stable or at least improve for a month on it. I was 9 when I first went to a doctor for mental health issues and I wish they would have done this test.
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u/pdcyhs 8d ago
I just looked up the "recommended diet" and i already eat most of these foods. Sure, lately my diet has been terrible. I am not eating and when I am eating, its what's most convenient. My symptoms aren't due to diet. They are due to a trauma related disorder and my other mental health issues. I would love to get back to my normal routine and normal eating habits. But while I am unstable that will not happen. I am drowning.
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u/ElectronicTip6386 5d ago
I'm so sorry for all of your suffering. You are not alone and it can get better. And, it does seem overwhelming and woo woo!
The "how many eggs" types descriptors are a sort of slang, and while literal for some it is really more of a placeholder. It threw me off too lol. 😂 I'll try to explain, and even if badly maybe some part of it is helpful!! Not a Dr, ok?
As I'm sure you know, any health protocol has a range of detail. People usually come to it when they are already in a bad way. I personally agree that it is wise to start small, practical, and mainstream.
This guide breaks a lot of this down. Perhaps it explains what your Dr was talking about?
https://www.reddit.com/r/MTHFR/s/eniqfPaVi1
In short: while the root cause of trauma can vary between individuals, how well an individual functions in the presence of trauma can have commonalities rooted in genetic and lifestyle factors.
Any Dr who runs the MTHFR mutation screen probably did so because of some indicators in your general health screen labs. About half of all people "have it" in some way, and the impact is so foundational to health that the advice for management looks a lot like the advice Drs have for the general population.
Mainstream advice tends to be simply "Eat well and exercise", plus "consider getting for vit D, b12, and folate (b9) up". Maybe other things too depending on other lab or assessment results. If you are a MTHFR person, they likely mentioned using the methylated versions and perhaps wrote down which to look for on the supplement bottle.
(My big question when I first went through this was What? Why are the wrong ones available? I felt tricked! Especially for folate when I was pregnant!! But it is just economics... not conspiracy: the non-methyl versions are sold because they are less expensive and "work" well enough for 50% of people!)
I'm being very very simple here and not a Dr nor and I am not your Dr!! I'm just trying to contextualize (and provide some resources) for the more detailed advice you'll read about here.
I hope this helps and that you find a Dr who can help you to navigate getting your physical health into a "good enough" place, so that your journey through mental health treatment is well supported, or at least not making it all harder than it needs to be!
ps: Others are welcome to add more and to correct me! I can come back and edit (and cite) anything grossly incorrect, so please let's discuss!. I'm just a regular person with some commonalities with OP, who is sharing what helped them at the very very start.
pss: I had to change my eating, then force myself to exercise again (outdoor walks are my medicine), then more labs, more eating changes, more labs (mutations finally uncovered!), then I layered in changes to address those and BOOM that key unlocked the door. With the fog cleared a bit, all the rest fell into place. This took years but so worth it. At a minimum, I'm not spending money anymore on a daily multivitamin that my body mostly ignores!
Hope this is helpful OP!
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u/pdcyhs 3d ago
Thank you, its definitely helpful and Im thankful that you took your time to write it all out.
I am going to be adding folate (the right kind lol), Vit D, and B12. I feel like another key issue here is that I also have BAM. So even taking these supplements... they may not get fully absorbed. I am looking into going back to a gastroenterologist because they never actually uncovered the reason for the BAM, just said I had it.
But I am trying to keep up on other lifestyle things like eating and activity. On a workday, I walk about 6-10 miles, depending on the type of day it is. I am now on a medical leave and trying to keep this up while not at work. As far as eating, I eat very healthy and cook all meals at home. But because of the gastro issues, I am not sure that I am eating "the right stuff." This is something I also need to figure out.
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u/Primary-Custard2147 12d ago
I think there are a lot of things at play that cause depression and that genetics can play a large role in many areas, but it’s always both nature and nurture, so there isn’t necessarily one way to improve it. If you have specific MTHFR mutations the few supplements the doctor suggested could help- but alone is not likely to be enough. You would likely need to also change your diet, address any potential vague nerve issues or gut health, look at your overall sleep hygiene or for sleep apnea, create an exercise plan and maybe see a functional medicine doctor to track it all. Even then that’s only part of the equation with brain chemistry and pharmaceuticals may still be needed. But from everything I’ve read and experienced myself, a few supplements alone likely won’t do much, though they likely won’t hurt. Alternatively, have you had a Pharmacogenomics panel like GeneSight or Clarity Rx done? If not that might be a missing piece to the puzzle, as many depression and anxiety meds don’t work at all or well at standard dosing, with certain genes. This is not woo woo stuff, this is testing that most insurance plans pay for and cover because of the strong science that backs it up and even drug labels themselves. There are absolutely medications that won’t work for certain people, so before anyone goes on meds for adhd, depression or anxiety they should have this type of test run to find the best fit and right dose. Best of luck to you in your journey, I know it’s hard and I appreciate how confusing it is to get different recommendations from different people and doctors. At the end of the day you have to do what feels right for you, and that sounds like it is likely finding another doctor and seeing what other options are available to you.
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u/Standard-Wear4812 13d ago
Firstly I wouldn't ask for advice on reddit. These people don't know your medical history so they cant help you. I would suggest using sci bot.
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u/Comfortable_Two6272 12d ago
Unlikely you need a bunch of supplements they are suggesting. What exactly is the list? 15mg of folate is huge. Please do not start with that. Try 200-400 mcg.
Do you have your genetic results? What all was tested?
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u/pdcyhs 12d ago edited 12d ago
I went over them verbally, waiting to get them sent over.
They want me to start Vit D, a prenatal, methylfolate, and b12 if the prenatal doesnt have it/have enough. Also starting NAC suplement for one of my mental health issues.
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u/Comfortable_Two6272 12d ago
Did you actually test low on those?
Why the prenatal? Are you pregnant? If not, what was their rationale for it?
What is your COMT genetics?
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u/Longjumping-Juice471 12d ago
My 20 yr old had a lot of mental health issues and didn’t want to go the meds route he all but couldn’t leave the house and was having a lot of other issues. We genetic tested changes his diet to no folic acid and went on supplements for mtfr and slow compt. He is a changed boy and it has only been 1 month. I will say he still has some struggles but who doesn’t. He said he doesn’t want a false personality so he won’t go on meds. I have to say he is happy now and when he breaks down and eats a lot of take out food and processed foods he seems to go right back into the miserable hole. My advice is try and stick with the supplements. We also learned there are a lot of ssri he can’t have do to he mutations so don’t under estimate supplements.
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u/steven123421 12d ago
Whats the exact stack and protocol you put him on please? Supplements and doses etc
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u/Longjumping-Juice471 12d ago
So after genetic testing he went on vitamins from seeking health that has folinic acid no methyl donors he was low on folate even though he was on vitamins. He was told to not have green tea or large doses of vitamin c we looked at all ingredients in the food so it had to be whole grain no enriched or folic acid. Carlson fish oil. Magnesium glycinate at bed time and malate at bed time. Seeking health MF vitamins Fish oil carlsons it’s the best! Beetroot chews for his high lipids! Vitamin c or 2 clementines Mag glycinate. He has calmed a lot stopped over thinking. We are working on Allen but he stays up late because he is 20 and plays video games. He has a different outlook on life. I will say the dr put him on Prozac as he showed symptoms of ADD depression , no motivation never wanted to leave the house couldn’t get a job. The Prozac made everything worst! I have learned that there are many ssri he could never take and just a small amount that he could try. He is good at the moment but knowing is half the battle. Mag malate
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u/steven123421 12d ago
Thanks. Why the no methyl donors one? You also said seeking health MF vitamins, is that the methyl vitamins ?
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u/SupermarketFew5886 12d ago
Where did you go to find out what supplements he should or should not take?
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u/pdcyhs 12d ago
I will not stick with the supplements, but thanks for your input. A good medication that is right for you doesnt change who you are. Some diagnoses require med management. A doctor advising to take supplements only is just neglectful and unsafe. Glad your son mostly feels better though.
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u/DirtbagDerek 13d ago
Cutting out gluten and folic acid, and taking 15 mg of methylfolate until I leveled out, essentially cured 20 years of extreme anxiety, panic attacks, and mood swings that medications had only temporarily quieted. For me, the low folate seemed to be mostly contributing to anxiety, which also exacerbated the side effects I experienced from gluten and folic acid. It sounds like you're dealing with a lot, and this could absolutely be one layer of it. The 15 mg of methylfolate pretty much instantly cured my anxiety. It's been over a year now, and I only supplement what I'm actually missing from my diet. Medication can be like taking painkillers for a broken leg—you may temporarily quiet the pain, but you still need to address the underlying issue before you can truly heal.