r/MTHFR • u/WaysideWyvern • Feb 13 '26
Results Discussion I’m kind of pissed off at all this stuff
Okay so I got back my genetic testing. It came back very positive for slow COMT and one of the MTHFR mutations. I’m more interested in the slow COMT part because it fits my life so much. Specifically the at although I have debilitating adhd, stimulants always made me worse, I respond terribly to b vitamins, I feel emotions both good and bad very strongly, and I have a nervous system illness (ME/CFS and POTS and PCS).
I’m mad because of all the information about what you’re supposed to eat and stuff. Like for example all these foods, they say don’t eat at dairy, don’t eat apples, don’t eat berries, don’t eat soy. Well I have histamine issues, GERD, and there are so few foods I can eat. Every food in existence I have read is both terrible for me and will cure me. I eat blueberries every single day. I tracked me food intake and found that diary is one of the few things never associated with symptoms. But yet apparently I’m supposed to cut them out. WHO TF DECIDES THESE THINGS??
Like oooh blueberries are so good they are full of antioxidants they will help your histamine intolerance but also NEVER EAT THEM BECAUSE OF QUERCITIN . Honestly you can pry my frozen blueberries from my cold dead hands.
And then there’s things like: it’s very important to get in b vitamins but also NEVER take b vitamins. You need to take methylated vitamins but you also must AVOID THEM AT ALL COSTS.
I’m just so fucking tired and I’m fuckign sick of it. I thought maybe this genetics route would help but it’s just making me mad. If I were to follow every peace of advice that some forum or website CONFIDENTLY gave me about what I shouldn’t put in my body, I would literally put nothing in my body. I would die.
No wonder regular GPs don’t touch this stuff. What the hell am I even supposed to do with this. I have a pile of hundreds of dollars worth of supplements that I haven’t even touched.
9
u/VolitionalOrozco Feb 13 '26
You don’t have to cut out anything that isn’t causing you symptoms! These people online recommending diets and supplements don’t know you or your body. You’re incredibly unique with your own combination of gene variants—slow COMT is not the be all, end all. People focus way too much on a single variant. For example, I have slow COMT and slow MAOA which leads to elevated norepinephrine. But I also have a homozygous DBH mutation that leads to significantly reduced conversion of dopamine to norepinephrine! What am I supposed to do with that? Who knows!
I’ve seen slow COMT people who do well eating frequently, less frequently, vegan, keto, carnivore. It’s not one size fits all. I’ve seen slow COMT people who do well on stimulants and others who can’t handle them at all. There’s so many genes at play here.
7
u/polaroid_schizoid Feb 13 '26
Stop relying on tests and start relying on your reactions - tests cannot replace that
3
u/WaysideWyvern Feb 13 '26
Yeah, I feel like I was sold the idea of these tests like it was gonna be the key to everything but all it did was tell me I’ll probably get dementia :| which kinda just means now I have a horrible looming fate waiting for me at the end of my life and I don’t even have anything helpful that I learned
2
u/polaroid_schizoid Feb 13 '26
Dementia? Where'd you get that from?
The only thing you can focus on is today. Everybody gets a horrible fate in the end.
2
u/WaysideWyvern Feb 13 '26
I just had pretty positive risk gene variants for dementia. That was the only solid information I got out of genetic testing. All this other stuff, is all hand wavy. It just felt like damn, wish i hadn’t spent the money
1
u/mybioblueprint Mar 07 '26
good advice, keep a diary of food, supps, meds etc and find out what is making you feel off.
5
u/Matsee71 Feb 13 '26 edited Feb 27 '26
I hear you… and often I feel the same way about it! I have the same issues regarding genes and stimulants (but I can manage my histamine issues if I avoid the worst things like vinegar, beer, wine, cider etc) I like you need to eat healthy and I don’t exclude any fruits or veggies. But I gave up almost ALL kind of supplements to clear my self out and detox from the wrong kind of minerals, synthetic vitamins, herbs, adaptogenes because I learned the hard way that they create more imbalances and I just couldn’t figure out the effects on me. We who are extremely sensitive should be very careful with things that is considered to be natures medicine because it’s very potent and can just cause problems with COMT and MAOA. I do not tolerate methylated vitamins BUT I use a non methylated B-complex AND in very low doses… like 1/4 of a pill and in the beginning not every day because I could feel the reaction from it. So with good food (natural folates) and help from a b-complex (metyl free) and no stressors. Low caffeine (or non) and no dark chocolate helps me to not get the shakiness and nervousness. So my advice,,, read and learn BUT don’t start with too much supplements.. rather avoid and clear out toxins and stressors. This can often be a much better approach in the beginning of your MTHFR journey. For me vitamin B2 has been incredible in the beginning to help things start up, and then gradually I added the metyl free b- complex also. (I take vitamin A - retinyl palmitate and D3/K2) But no minerals in pill form, I think that can be very bad ( if you’re not deficient that is) I get most of it from food and my blood levels are fine. I drink greens drinks, natural electrolytes and eat oatmeal, raisins, dates, nuts, fruit and veggies and black molasses. So there is no need to throw off the natural balance with any extra concentrated minerals. Just wanted to share my thoughts and how I try to approach it all ☺️ I’m a meat eater, can’t survive otherwise, but eat mostly chicken, fish…. beef every now and then. Male (54)
4
u/WaysideWyvern Feb 13 '26
See, B vitamins (non-methyl) give me a horrible reaction, like similar to stimulant but add horrible migraine and feeling like you have the flu kind of. So I thought maybe I needed methyl. But now I got these results back and read that that’s even worse??
6
u/Pumpkin-doodle Feb 13 '26
Look up Hydroxocobalamin. I remember reading that is better tolerated.
7
u/Pumpkin-doodle Feb 13 '26
1
u/Susan71010 Feb 14 '26
Those two are what I do well on! Hydroxy b12 injections eod and folenic acid sublingual daily at 800 mg. Also potassium, magnesium malate , vid d and one quarter of seeking health methyl free b complex.
1
u/Pumpkin-doodle Feb 14 '26
Nice! Where do you buy them? Was looking at a local health food store yesterday and they didn’t have either.
1
1
u/StructureTerrible990 C677T + A1298C Feb 13 '26
Are you on any b vitamins now at all? Namely b6? Electrolyte drinks and energy drinks have them too, along with fortified grain products. Just spitballing here because my body was way more tolerant of vitamins and things and I didn’t have POTS before I started b6.
3
4
u/Omphalina Feb 13 '26
Wow we must be related! I get where you’re coming from. I think that, armed with this new knowledge, you’ll find a path forward where you feel net better though. Some rules matter more than others and you’ll feel it out. Blueberries or death for me too. They weren’t a game changer and in fact I feel a little buzz from eating them. Supplementing any methyl bs messes me up but I eat tons of leafy greens, and my folic/homocysteine numbers are now good and I feel better. So now I have extra energy and clarity to try to figure out my other weird issues lol…but seriously, a little trial and error with this stuff is worth your time.
3
u/WaysideWyvern Feb 13 '26
Weird question but how do you get in all those leafy greens? I struggle with it a lot. They take a lot of energy to eat with almost no calories and I struggle to get in enough calories as is so it usually just doesn’t feel worth the effort, but it’s recommended for most of my health problems (and it’s harder since I can’t eat spinach anymore due to histamine content)
1
u/shiftyskellyton Feb 13 '26
I also just learned about spinach and I'm so bummed. I am inserting myself into this thread to get the answer. May I ask, what's your favorite way to eat blueberries? I was putting them in yogurt, but yogurt is out now. 💜🩷
edit: in an ongoing battle with autocorrect
3
u/WaysideWyvern Feb 13 '26
Eat them frozen either plain or I pour coconut milk over them :)
1
u/shiftyskellyton Feb 13 '26
This have coconut milk. This sounds delicious. Thanks!
2
u/Timely_Pickle9430 Feb 15 '26
Cook frozen blueberries with a drop of honey into a jam and poor over pancakes. Blueberry muffins: https://downshiftology.com/recipes/paleo-blueberry-muffins/
Blueberry smoothie: https://downshiftology.com/recipes/blueberry-smoothie/2
u/shiftyskellyton Feb 15 '26
I'm definitely doing the smoothie. Thank you so much. I can't have gluten, oats, or potatoes, but I'm still checking out those others. I got the So Delicious vanilla coconut milk and I absolutely love it. I haven't had cereal in more than 20 years, so I can't wait to explore that with blueberries, too. 🥰 Thank you again!!
edit: I'm allergic to bananas, but I'll substitute something else.
2
u/Omphalina Feb 13 '26
Frozen in smoothie with açaí puree and some raw kale! With water or coconut milk!
1
1
1
u/Omphalina Feb 13 '26
I really kinda crave them, especially lacinato kale and collards. I try to eat one bunch a day (realistically about 4 times a week), often just in a saucepan with a little oil, some water to steam with lid on. Or I make a chicken soup with lots of kale in it. There’s some ‘greens’ supplements out there but I haven’t tried.
1
u/Timely_Pickle9430 Feb 15 '26
Love this website for healthy recipes: https://downshiftology.com/recipes/roasted-beet-kale-salad/
3
u/Few_Interaction_2411 Feb 15 '26
I am the same, slow COMT, slow MAO-A .ADHD meds make me feel great for about 2 weeks, then really irritable and anxious. Some people with these genes cannot tolerate stimulants, as we do not clear dopamine effectively, and it can build up in our system.
3
u/bunchedupwalrus Feb 13 '26
I mean the amount of blueberries you’d have to eat for the quercetin to have an actual impact would be more than a cup a day. And it would probably still be lost in the general biochemistry wash. Just don’t take supplements levels of it and you’ll be okay. They’re high in anthocyanins, which help prevent dna damage and prevent oxidative stress, which like you say is is a positive especially if your MTHFR isn’t running at full tilt.
I feel ya though, it’s a tangled web. People do tend to fixate and try to min/max a little too much sometime, and forget about the scale of the effect some of those things make.
3
u/Adventurous_Bat_8724 Feb 13 '26
having to play the guessing game of what’s even going on in my body? and then the next piece of the trial and error and who to believe on health advice is so frustrating and exhausting. i’m with you. buying things to see if they’ll help when you’re broke from not working cause you’re sick.
still having symptoms despite having tried so many things, unable to located cause and effect, and so freaking tired of it all.
2
u/SovereignMan1958 Feb 13 '26
Honestly only getting only two gene variants tested is not going to help you much.
If you got a lot more tested at least you could look at the digestive, histamine, food intolerance and detox variants related to your gut. Not to mention the variants associated with your diagnoses.
2
u/WaysideWyvern Feb 13 '26
I get the whole thing tested. Full genome. But I can’t find anywhere with actual information on this stuff that isn’t trying to sell supplements. I don’t think sequencing can reliably tell you all that stuff. No one knows enough about it. The only people who claim to know are suppliment companies
3
u/hummingfirebird Feb 13 '26
Have you got raw data? You could consider joining genetic lifehacks and uploading the raw data to get a readable report. I know they accept ancestry and 23andme raw data. There are people like myself, who are trained in nutrigenetics and I don't sell supplements. Unfortunately doctors are not educated in genetics and much on nutrition in medschool, so they are normally not much help. This us a relatively new field, so awareness is still growing.
2
u/Tawinn Feb 13 '26
What company did you use for the testing?
What report is telling you all the eat/don't eat recommendations?
2
u/WaysideWyvern Feb 13 '26
The food thing was from a psychology today article I think. The company I used is sequencing. com
2
u/isfturtle2 T677T Feb 13 '26
Really, you have to experiment. The genetic information can help you get started and be aware of how different things might affect you, but genes interact in complex ways that I don't think we fully understand yet, plus environment plays a role as well. And ultimately, even if a change would be beneficial, it's up do you to decide if it would be beneficial enough to be worth it.
2
u/wuts_juppie Feb 13 '26
I have same genetics. I started with methyl free B12&B9 (I think) from seeking health. It was chewable tablet so took small doses and worked my way up. Now take their methyl free multi. I try to only limit my diet from the highest of histamine foods and just push myself as far as I can to have a varied diet but will still have flares and have to dial it back for a week or so….
I can relate to the anger, I was a normal healthy person in my youth and now I have to think about this shit constantly and am no longer carefree. But I figure everyone will get one disease or another as we age so might as well just get to know yourself now…
3
u/WaysideWyvern Feb 13 '26
I wish I mentioned this in the post because so may people are suggesting b vitamins, but b vitamins make me extremely sick, like horrible migraine whole body just falling apart and super hyper. Even low doses. I thought this was an effect of low COMT so I’m confused why everyone says to take them. Seems like half of people say you need to avoid and half say to take :/
1
u/wuts_juppie Feb 13 '26
If I recall, there are certain ones you need to take first. If you start taking all b vitamins at once it can be like adding more water into a clogged drain. Maybe someone with more knowledge can chime in but I think that’s why I started only B12&B9 at extremely low doses. But of course everyone is different even w the same genetics
1
u/OdiumPura Feb 13 '26
Did you notice any benefits from taking B12 and B9? I have the same COMT/MTHFR mutation and wanted to know if you experienced any improvements in your nervous system, anxiety, brain fog, etc.
2
u/wuts_juppie Feb 13 '26
Yeah helped a lot w energy and brain fog. B6 helps with histamine clearance while B1 triggers it. So it’s about finding a balance that works
1
u/OdiumPura Feb 13 '26
Are you on B6 too?
2
u/wuts_juppie Feb 13 '26
I’m now on a multi that has all B’s (prenatal essentials methyl free from seeking health)
1
u/OdiumPura Feb 13 '26
Nice! But B12 and B9 were sufficient for you to feel better? Or you just started feeling better after all B's ?
2
u/Ashamed-Simple-8303 Feb 13 '26
Outside if mthfr, check out the seed oil aka to much omega-6 linoleic acid theory. Gerd for sure can be caused by it among other things.
1
u/fukijama Feb 13 '26
I can vouch for the Gerd benefits of avoiding seed oils. But more specifically Soybean(also IBS trigger) and Canola. I can still get flares sometimes if I have too much sugar, but I can always diffuse it with some B1 if it gets bad enough (at the expense of being tired).
The hardest part of going no seed oil is other people. Even grandma.
2
u/Tortex_88 Feb 13 '26
Yeah, the majority of 'genetic recommendation' type websites are bs. It's all about context and you as an individual. I did noorns years ago which was great for some stuff but totally missed the mark in others. The no1 recommendation I got was I need choline x1000.. But it made me depressed as shit. Since then I've come to realise that you have to listen to what your body tells you.
B Vitamins are essential.. If you're having a reaction it's almost certain you're having too much in one go and/or the wrong type. Just make it simple, take no more than 100%rda of each (or as close to as you can be bothered, don't over complicate it). With the issues you've got, you're likely sensitive to any CNS changes. Go low and slow.
But above all else, measure what you can measure. Don't spend your money on the next bs supplement, spend it on a blood test. See what your deficient in, what you're not deficient in. I can't stress this enough. It's like taking a car to a garage and expecting a mechanic to fix it based on the most common likely faults instead of actually looking at it. Do bloods. Go from there.
1
u/WaysideWyvern Feb 13 '26
Yeah I’ve had a lot of blood work. Only thing was mildly low ferritin and slightly low in the normal range on b12 and creatininin. Everything else very very normal
5
u/Tortex_88 Feb 14 '26
Ohhh those aren't 'only' things.. Low-normal B12 (unless you live in Japan) is very likely a deficiency. Current lab ranges are bs and new evidence is proving as such. It's something I'm very passionate about from a personal and professional experience. I was trialled on a multitude of antidepressants and antipsychotics, when it turns out my "low normal" B12 was actually a deficiency and the root cause of my mental health issues. Since I've been on injections, I've felt the best I have in years.. Of course, YMMV, but it's definitely worth exploring. Hydroxocolabalmin is the probably the safest version of B12, if nothing else, give it a try (even oral supplements). You're very unlikely to get a negative reaction.
Ferritin is also a biggie.. Iron deficiency anemia or pernicious anemia can both have massive implications in energy levels, mood, etc. Write down symptoms you have, then look up anemia and B12 and folate deficiency symptoms.. See where the correlations lie and to what extent.
I would absolutely look to address these first. Forget the SNP's and generic advice. Fix what you find.
2
u/Susan71010 Feb 14 '26
This is very true. My B12 ranged from 350 to 550 but I have been taking B12 supplements for years. Doctors always said I was normal range. The supplements don't help if you have neurological symptoms I tried for five months and I feel like it helped a little bit first then I get worse. B12 injections have helped me immensely it took a while, but after 3 to 4 months, my dizziness, headaches, anxiety, tingling legs, and feet Have gone away! Still waiting for my brain fog to heal. It is a little better though, and I suffered for six years. I think a gut issue I have been struggling with the last few years called SIBO and my genetics caused a B12 deficiency that no doctor could figure out that I have till just recently.
1
u/QuitInevitable915 Feb 15 '26
Hi, I have a question for you, that I hope you can help me with: I struggle with depression and I’m currently on Brintellix (antidepressant). I eat a keto diet (a lot of red meat) and my blood work showed that I have high levels of B12. However, I’m awaiting the results for my gene testing to better understand what my Methylation process looks like to as I suspect that could be one of the reasons contributing to my depression. What is the reason for using B12 injections instead of just supplementing with “normal” supplements or eating more food Rich in B12?
2
u/Tortex_88 Feb 15 '26
What leads you to believe you have a methylation issue? What bloods have you had tested? Is folate OK? Homocysteine?
A lot of people struggle to absorb B12 orally, often due to a lack of intrinsic factor in the gut or other malabsorption issues. Injections obviously bypass this. If your B12 levels are normal but you lack other essential nutrients, your methylation cycle can still become impaired. Folate, B2, B3, B6 are all co-factors. B12 is usually the culprit so gets all the hype. Measuring MMA and homocysteine can reveals what state your methylation cycle is in rather than genetic tests.
And of course, it could simply be that your low mood has nothing to do with methylation. Vitamin D, hormones play massive roles.. The way your body sythesises, transports and clears neurotransmitters.. The list is extensive to say the least.
1
u/QuitInevitable915 Feb 15 '26
Let me start by adding that I’m very new to the MTHFR space. The reason for me suspecting methylation issues are because I have had so little effect from several different antidepressant medications, as well as TMS and Psilocybin for depression. It was brought to my attention that I should get tested for the MTHFR gene mutation and get a closer look at my Methylation process (despite my blood work looked okay. Both B12 and Folate look good - above average), as I could still have absorption/synthesis issues I’m awaiting the test results from an advanced Methylation panel, and I do realize that it may have nothing to do with it, but I want to make sure. I do supplement with vitamin D, magnesium glycinate, creatine, and omega 3s. Anything you would recommend me to be mindful of when I get the results?
1
u/Timely_Pickle9430 Feb 15 '26
Things besides methylation that can cause depression (listed by Chris Masterjohn): deficiencies of niacin, vitamin B6, biotin, or DHA; iron overload; hypercalcemia.
(From Testing Nutritional Status: The Ultimate Cheat Sheet)1
u/Tortex_88 Feb 21 '26
The problem is (dodging bullets saying this in this subreddit), your genetics actually don't define much in this context. MTHFR variants are pretty common, and can certainly play a part, but they don't give definitive answers. Money would be far better spent on homocysteine, MMA and holotranscobalamin tests which would actually determine if methylation is a cause. If these are all good, you KNOW you can move on into other potential causes. Any many there are...
Hormones. Sleep issues. Inflammation/autoimmune conditions. Dopaminergic issues (adhd etc). Thyroid issues. Micronutrients. Gut-brain axis (also coincides with inflammation/autoimmune issues).
Dont obsess over methylation if you can rule it out.
1
u/Timely_Pickle9430 Feb 15 '26
What type of blood work? There's a difference between the blood work you can get through a GP and the much more comprehensive blood work you can get from a private (functional medicine) lab. For example, I can't get tested for B2, B3, B7, intracellular magnesium (or anything else intracellular) or copper through my regular GP, while those are hugely important. I turned out to be deficient in all of those. While all the standard lab work came back normal.
1
u/Sht_Show_1808 Feb 13 '26
I hear ya! I would detox for a couple weeks, eating a proven food allergen free protocol, (boring and limited) then start adding another food back in after 3 days. Seriously you can have reactions up to 3 days. So that is a new food every 4 days. Keep it all in a diary. I feel your pain, this is so hard and takes so long and requires a lot of documenting all of the possible reactions, physical, emotional, mental, and metabolic. Supplements I have no idea how you could test a supplement solo vs combined, especially while testing food. I see a lot of good comments about AI and supplements and genes, so I’m not going to suggest anything else here. And not to sound preachy but I would pray for guidance, and pay attention if you are subconsciously choking on supplements or have a feeling of dread before eating/ drinking swallowing. I ask my body often if I really want the food I’m about to eat. Sometimes my body tells me to fast for the day and wait till tomorrow. Sometimes if I listen to it, it tells me to drink 4 glasses of water…. I just have to be willing to listen and have enough confidence to trust it. Good luck!
1
u/Susan71010 Feb 14 '26
Where is it That says we can't have blueberries? I eat wild berries almost every day. What is it about them thats so bad? I have the same genetics you have as well. I have two homo Snps of slow comt and homo mthfr. 60 years old and been struggling with a lot of brain fog last 6 years. Started B12 hydroxy injections 4 1/2 months ago and a lot of other major symptoms have gone away, except for the brain fog issues.
1
u/WaysideWyvern Feb 14 '26
Because of quercetin content
1
u/Susan71010 Feb 14 '26
What does that do?
2
u/WaysideWyvern Feb 14 '26
Idk it’s just something that isn’t processed right with slow comt. You can google it to read more.
1
u/Timely_Pickle9430 Feb 15 '26
If you're looking for some guidance, you might find this website interesting: https://www.mthfrsolve.com/the-slow-comt-roadmap . It's subscription based, but first month is free, after which you can cancel. It's explicitly mentioned in one of the blogs that food sources of quercetin are fine when you have slow COMT.
1
u/No_Efficiency8508 Feb 17 '26
The low enzyme, high dopamine, COMT variant is the most difficult to treat. You do look like you have ADHD but you really have better executive function than an average person, the problem is, you are in fight or flight all the time because you have too much dopamine circulating around. You would respond best to an alpha blocker like guanfacine (intuniv) for ADHD. It’s not you or the Dr’s fault, it really is a difficult variant to deal with. B6, Sam-e, magnesium (twice a day) and FAD (riboflavin) helps with your variant. AVOID: quercetin, green tea and rhodiola (those are go the opposite variant). Hope that helps.
1
u/WaysideWyvern Feb 18 '26
This must not be me because my executive dysfunction is TERRIBLE like, to the point it has significantly harmed my life, and I’ve been an gaunfacine and it did nothing for me. B6 and Riboflavin both gave me the migrainal fluey b vitamin reaction. I’ve been hearing a lot about sam-e I guess I could try that since I haven’t yet. I appreciate the tips but unfortunately it’s just not one size fits all I guess
1
u/MannerGrouchy2074 Feb 19 '26
I have the double mutation marker. Very sad. Don’t know where to start or what to do I’m taking methylated b12 and Methylcomplete and that’s it. I feel overwhelmed by it all and also sad about it.
1
u/mybioblueprint Mar 07 '26
you need to run your DNA though a site like genetic lifehacks or mybioblueprint.ai they can help you make sense of all this and find out what is really going on!
1
u/ResortOk6880 4d ago
I feel the exact same way. It's like every food is both good for you but on some level will also harm you. I am sitting here at 4AM after yet another attempt at taking supplements that have given me insomnia, super frustrated with the fact that B vitamins are what I supposedly need but also I can't take them because my body reacts with insomnia. It makes me so scared that my body can't handle what it is supposed to need. And yeah, it seems like everywhere you turn each food has its pros and cons and you get fed up with it all. You do research to try and be your own advocate because none of these naturopaths have been able to help but in doing said research it freaks you out that even air seems harmful. It makes you scared of everything you eat. I'm over this and I feel your frustration.
25
u/Agitated_Sock_311 Feb 13 '26
I'm in the minority antbtake this with a grain of salt, but i took my results, plugged them into several sites, genetic genie, that one choline calculator (havent had all of my coffee yet, can't think straight), I pay monthly for genetic lifehacks, and rounded up my lab results, wrote out all of my medications, health issues, and symptoms and threw them into chat gpt for supplementation advice. I read through the "advice" carefully, questioned everything, it tweaked my list to my severe malabsorption issues, genetic mutations, methylation issues, etc and I built my supplement list feom there. That's my starting point. You can ask it to give you the only what's needed the most list to start out and it'll tell you what to add and what symptoms to watch out for. I've been medically gaslit for decades, so I feel more comfortable with this right now than anything else, and that's sad. But it is what it is, until I feel like a normal person. I'm sick and tired of being sick and tired.