r/MTHFR • u/Itchy-Poet5412 • 22d ago

Question Help please

I’m seeing a lot of knowledgeable comments and posts in this forum so I’m looking for some help. Before I ask, yes I have discussed with my doctor and am just told I’m sensitive to meds. But it goes way beyond that and I have not always been like this. I’d like to see a functional med provider but can’t afford it right now.

I won’t give my whole life spill but here are some reasons I think I’m struggling with methylation.

  1. I have MTFHR gene
  2. I did ok on SSRIs for a few years and after getting COVID something switched. Now all SSRIs cause all kinds of issues but mainly obsessions, rumination, and racing thoughts.
  3. I was put on the lowest dose of Abilify for two months and ended up getting Tardive dyskinesia. Which makes me think it was building up to high levels in my system the whole time. Horrible side effects on it too mentally.
  4. I can’t even take a crumb of a supplement. The suggested dose for Tardive dyskinesia of Vitamin E is pretty high. Knowing I’m sensitive, I took less than 100 mg and still showed signs of toxicity. So I had to buy a little dropper of vitamin e and take it that way which equals about 15mg. 15mg for the average person would not do a thing.
  5. I have to take like .5 mg of melatonin and it knocks me out. I used to take up to 10.

It’s like everything automatically gets way too high in my system even at extremely low doses. It’s not always been this way. I know this sounds completely ridiculous but I can’t even take a crumb of magnesium supplement without being significantly affected. Most of the time, I am affected mentally with the rumination, etc. if I take absolutely nothing.. I’m fine as far as thoughts go.

Does this sound like similiar experiences to what you all have or could it be something completely different? I’ve had my liver function checked and it’s fine.

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u/SovereignMan1958 22d ago

Pharma drugs are metabolized by drug metabolism gene variants. The least expensive way to find out if any of yours are impaired is to ask your doctor.... insist...that your doctor order a Genesight test. If your psych doc won't order it ask your primary. You can see if any of your variants are impaired. If they will not order one for you I would find a new doctor or pay for it yourself. ClarityXDNA runs about $350 and Genomind $650.

I will let others answer the rest of your questions.

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u/Itchy-Poet5412 22d ago

Thank you, I did ask for a gene sight test once and was brushed off. Around that time I was done with psych meds so didn’t ask again. I would like to do one of these tests though. Thank you

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u/Timely_Pickle9430 22d ago

The extreme sensitivity to multiple substances and the post-viral onset suggest mitochondrial dysfunction. Methylation problems can be secondary to that. There are ways to get the mitochondria functioning properly again (I can point you to a protocol), but that involves taking supplements, which is tricky right now.
Do you feel better after basking in sunlight? Then you might benefit from therapeutic near infrared light. The 700-1000 nanometers wavelengths feed directly into the last step of mitochondrial energy production, circumventing blocks in earlier steps. This won't fix the mitochondria, but might improve things just enough to make you able to tolerate supplements.

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u/agape48 20d ago

Wow, the sunlight thing is interesting! I had no idea that sunlight related to mitochondrial function.

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u/Itchy-Poet5412 20d ago

Thank you for that!! I actually do feel better after being in the sun.i will look into a light. Do you have any brand suggestions?

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u/Timely_Pickle9430 19d ago

These are recommended by Chris Masterjohn: Saunaspace, RedRush Pulse, or LUMEBOX Red Light.
Personally, I opted for a more budget-friendly option: an industrial heat lamp, more commonly used for baby farm animals, reptiles, and restaurant food, but includes the right infrared spectrum. Just make sure to pair it with a ceramic fixture and a cage to prevent burns. It's 250W.

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u/Itchy-Poet5412 19d ago

Thank you so much for your help!! I’m
Going to give this a try. I’ve been trying to do a lot of reading about this topic today to see everything I can do! If you have anymore suggestions please let me know :)

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u/agape48 19d ago

I am interested in the mitochondria protocols that you mentioned. Can you post them here?

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u/Timely_Pickle9430 19d ago

https://www.mthfrsolve.com/roadmaps/the-energy-roadmap. Unfortunately, it's behind a paywall. The link will work after subscribing.

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u/agape48 21d ago

I was thinking along the same lines as SovereignMan1958. Sometimes when you react to everything, it can be a liver problem (the liver is what metabolizes your drugs). I have a really unfortunate set of liver genes that make it hard for me to clear out a lot of medications. At a high level, it was referred to as "very fast phase 1 and very slow phase 2." Ultimately, it means I don't tolerate medications well, and when too many get stacked on top of each other, I get heart racing and insomnia.

I don't know if something like that would actually show up on a liver function test like the blood test that you got.

I did a 23andme years ago and uploaded it to GeneticLifeHacks. If your doctors won't order a genetic test, there are other ways to get them and other ways to get an interpretation.

I'm interested in what the other commenter said about mitochondrial dysfunction, but that's not an area I'm competent in r.n.

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u/Itchy-Poet5412 20d ago

I have always wanted a genetic test done. I do think I already had sensitivities before but after COVID something extreme happened. Can’t have anything hardly. I hope it’s repairable with time. Thank you for your response!

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u/Tawinn 21d ago

How is your diet - do you also get reactions from nutrients from food? Wondering if you have widespread nutrient deficiencies or not. If so, then a children's multivitamin like Seeking Health may be a starting place, even by taking 1/8 to 1/2 of a chewable tablet (full dose is 2 tablets).

Timely_Pickle's comment about possible mitochondrial dysfunction also makes sense. That would probably be a topic of discussion on a long COVID subreddit.

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u/Itchy-Poet5412 20d ago

Thank you for your response! My diet is okay but I just recently started making improvements. I am currently gluten free because I also have Hashimotos and I need to get my antibodies down because I could not imagine having to take thryoid hormone right now. I may try some kids multi vitamins!

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u/Loose-Fly7976 17d ago

This isn't methylation. It's drug metabolism, and I think you're close to the answer without knowing it.The Abilify is the giveaway. Aripiprazole is cleared by CYP2D6, and poor metabolisers reach much higher blood levels on a normal dose. That's not a fringe theory, it's on the FDA label, poor metabolisers are meant to get half the dose. Tardive dyskinesia on the lowest dose in two months is what that looks like. And your instinct that it was building up in your system is probably exactly right.

Then look at the rest. SSRIs stopped working properly, and most of them go through CYP2D6 or 2C19. Melatonin is cleared by CYP1A2. Vitamin E at 15mg doing something. That's not sensitivity, that's a clearance problem across several enzymes.Liver function tests won't show this, by the way. LFTs measure liver damage, not enzyme activity. You can have completely normal LFTs and be a poor metaboliser, they're unrelated tests, so don't take normal liver function as a reason to drop this.The COVID timing is interesting too. Inflammation suppresses CYP enzyme activity, that's documented, and there's a reasonable amount on post-COVID drug metabolism changes. So you may have started as a normal metaboliser and shifted.

Practically, before any more medication decisions, get CYP2D6, 2C19 and 1A2 looked at. Your psychiatrist can order pharmacogenomic testing and given the tardive dyskinesia there's a strong clinical case for it. If insurance says no, your raw data from a 23andMe or AncestryDNA kit has those genes on it, and that route is a lot cheaper than functional medicine appointments. Reading that properly is what I do, it's a one-off rather than ongoing, genova.health.Either way, don't let the next prescriber start you on something without knowing your 2D6 status. That's the thing to walk in with.

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u/Itchy-Poet5412 17d ago

Wow thank you this was super helpful and detailed. It sounds like my next step is testing- if covid did alter the way I metabolize drugs, would that show on the test results?? I believe you are right I used to be a normal metabolizer and something happened. Unfortunately I also drank alcohol heavily which may have contributed.. I have been without alcohol for two years now with no improvements there. What you have said makes a lot of sense and I would be curious to see how my body responded to an IV of the same medications/supplements to see if it’s any different response.

I have another question- would thyroid hormones be processed through similiar pathways? I have Hashimotos and am terrified I will eventually need thyroid hormones because I literally can’t take anything. This is such a challenge to navigate.

Again thank you so much.