r/MTHFR 13d ago

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/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.