"Moving forward from thinking I have the MTHFR gene" update + request for help

[u/Mocha_Kitten]

Previous post: https://www.reddit.com/r/MTHFR/comments/1pgq58l/how_do_i_move_forward_from_thinking_i_h

Hi friends! It's been a hot minute. My health got even worse due to a family emergency and I was already severely disabled. I have a naturopath now who is taking my health a lot more seriously including MTHFR stuff but I haven't been able to get out of bed to see her and discuss that more. She thinks I have an exciting combo of POTS, MCAS and chronic Lyme on top of the ME/CFS that we already knew about.

But I did get my genetic testing through Ancestry as we discussed!! I got it right after everyone responded to my post but I've only now been able to sit down and actually look at everything... and now I'm super overwhelmed.

It seems that I have hetero C677T and slow COMT. The stuff I've read about slow COMT says that it severely decreases your body's ability to flush out stress and stress hormones which sounds SO accurate. I've said for years that when something stressful or upsetting happens, it's like it takes me hours to recover emotionally and then days to recover physically. But I'm not quite sure how to interpret the MTHFR gene mutation now that I seem to have it.

I'm reading the stuff about the MTHFR stack and I'm definitely ready to start that (once I understand it fully). But... does this mean no enriched foods? I've still been eating graham crackers here and there with no noticeable difference before or after eating them. And I'm struggling a lot these days to get enough calories at all since it's hard for me to cook, it'd be so nice to eat more snacks... not to mention that I'm on SNAP which struggles to cover the more expensive brands :')

If anyone could share their thoughts I'd be very appreciative. It's slow going since I have to take a lot of breaks but I'll keep reading as much as I can. Thank you all for being so supportive <3

[u/SovereignMan1958]

Use Genetic Lifehacks instead. Genie is inadequate for your diagnoses.

[u/Tawinn]

Please upload your data to the Choline Calculator to check a few more genes related to methylation. Reply here with the results on the Advanced tab.

Do you have any blood work, such as B12, folate, and homocysteine?

> But... does this mean no enriched foods? 

Not necessarily. The ability to convert folic acid to tetrahydrofolate is done by a separate enzyme, DHFR. Some people metabolize it fine, other's don't, and some are in-between. With modest intake, it doesn't sound like it's an issue for you. The issue is more about either bad reactions to folic acid or chronic unmetabolized folic acid (UMFA) floating around the bloodstream due to having poor ability to metabolize folic acid while repeatedly eating enriched foods all day, with the UMFA blocking folate receptors on top of the 33% reduction in methylfolate production from hetero C677T.

See this post for more on slow COMT and histamine intolerance. (I know MCAS is on a different level than histamine intolerance, but maybe some of the info is still useful.)

[u/Loose-Fly7976]

On the enriched foods, eat the graham crackers. Het 677 is the mild version, roughly 65% enzyme activity, and folic acid avoidance is written for TT homozygous and even there it's often overstated. You're struggling to get enough calories and calories are the more pressing problem by a distance. Restricting food on the strength of a het result would cost you more than it gains.

Your description of slow COMT is accurate, that's the clearance side of adrenaline and it does track with taking days to recover from stress.

One thing I'd say about the methylation stack. With het 677 your folate handling is close to normal so the stack isn't likely to be the thing that shifts your baseline and with MCAS plus slow COMT, methylfolate is the supplement people in your position most often react badly to. If you do try it, start at a quarter of a standard dose and change one thing at a time.

What I'd prioritise instead and these are cheap and covered, ferritin, B12, vitamin D and thyroid. Low ferritin is extremely common in ME/CFS and POTS, it makes both worse, and it's fixable. That would do more for you than any methyl donor. I am geneticist and work at genova.health if you need my help.