MTHFR Changes: Thoughts?

[Blog Reader]

I'm curious: what do you all think about MTHFR variants?

 

[Blog Reader]

I've gotten advice from three perspectives: that my family must carry a mutation, that mutations don't really matter, and that mutations wouldn't really matter unless I'm homozygous. Because I'm spending money on supplements and doctors right now, I've not yet done any gene testing. However, I'm trying out various supplements, including ones that might help if an MTHFR mutation does turn out to be a major part of my problem.

 

[Creekside]

AFAIK, no one has found anything significant yet in gene scans for ME. So, an expensive gene scan isn't going to answer the question of whether you have a mutation causing your ME.

Have you found any supplements that have a noticeable effect? I have in the past had several supplements that noticeably helped, but then stopped working, in a few cases because the symptoms they were treating were permanently (hopefully) cured. I'm not presently taking any supplements, since I haven't found any that are worth taking. Aside from occasional VitC, because my food intolerances limit my dietary intake.

 

[Baz493]

I have both an MTHFR variant and an SLC19A1 variant (affecting transport of folate into mitochondria) so have been taking both an MTHFR and a folinic acid supplement in order to ensure sufficient provision of folate for cells. I found that adding the folinic acid to my diet made a fairly big difference to my condition; permitting a decent increase in my exercise regime within a short period. Methyl groups, which folate helps to play a role in providing adequate levels of, are necessary for intestinal iron absorption.

I am currently looking at the possibility that my own health issues might relate to an iron deficiency, with linked anaemia, relating to issues with a range of nutrients including folate. An industrial solvent induced nephrotic syndrome is likely also playing a role in this deficiency.

 

[Blog Reader]

Have you found any supplements that have a noticeable effect? I have in the past had several supplements that noticeably helped, but then stopped working, in a few cases because the symptoms they were treating were permanently (hopefully) cured. I'm not presently taking any supplements, since I haven't found any that are worth taking. Aside from occasional VitC, because my food intolerances limit my dietary intake.

My current theory (note: I'm not a doctor--this is just my hypothesis) is that maybe ME/CFS is related to bottlenecks in systems, especially in ATP production. As we solve one bottleneck, we start using up other nutrients, creating a new bottleneck. That keeps happening until we're getting enough of each nutrient and our bodies have leveled out and gotten used to the new normal. (That's my best guess, anyway.)

The supplements that have helped me have tended to be from the following categories:
--vitamins or minerals that I wasn't getting enough of in my diet (e.g., choline, vitamin K),
--vitamins or minerals that were being blocked or washed out (or otherwise made low) by my medications (e.g., zinc, magnesium, potassium, calcium, iron, D3),
--vitamins or minerals that maybe I wasn't processing right because of genetics (folate), and
--vitamins or minerals that my body used up as I supplemented something else (e.g., using up the B2 and B6 by supplementing magnesium).

Getting a form that could be absorbed was important; magnesium oxide apparently did next to nothing for almost fourteen years. And zinc oxide in multivitamins was apparently blocked by my reflux medication.

So I've taken vitamins like magnesium glycinate and malate, zinc citrate (small amounts), fish oil, iron (small amounts in children's vitamins and beef), D3, copper on occasion (but not often unless it's in a multi--I've kept zinc supplements low enough that copper is rarely the answer), choline, B6, B2, folate, B12, benfotiamine, and molybdenum. I've also taken some of the fat-soluble vitamins, but it's harder to tell whether they help, except that vitamin K seemed to be needed. (I'm still working on being able to take more vitamin K2--it's a hard one to get my body used to. It seems to deplete my calcium very fast.)

Basically, when my muscles start aching, I've started seeing it as meaning that they're low on a nutrient. And it actually seems as though that perspective might be helping! (Although we'll have to see how it turns out over time.)

One caution: When I start a new vitamin that really changes things, my electrolytes go crazy, perhaps for a couple of weeks. So I have to have easy/quick/plentiful sources of potassium, magnesium, and calcium (and occasionally sodium, but my fludrocortisone probably limits that need) on hand.

 

[Blog Reader]

I have both an MTHFR variant and an SLC19A1 variant (affecting transport of folate into mitochondria) so have been taking both an MTHFR and a folinic acid supplement in order to ensure sufficient provision of folate for cells. I found that adding the folinic acid to my diet made a fairly big difference to my condition; permitting a decent increase in my exercise regime within a short period. Methyl groups, which folate helps to play a role in providing adequate levels of, are necessary for intestinal iron absorption.

I am currently looking at the possibility that my own health issues might relate to an iron deficiency, with linked anaemia, relating to issues with a range of nutrients including folate. An industrial solvent induced nephrotic syndrome is likely also playing a role in this deficiency.

I'm also finding that folinic acid seems to be doing something. For me, it seems to be helping with odd symptoms like bleeding when I brush my teeth. It's also seeming to cause some symptoms, but I'm hopeful that they're transitional and that things will settle down once my body is used to this.

I hope you're able to find some answers about your iron! I don't take a very heavy amount of it, but I know that taking a little can make me feel much better sometimes. (My latest labs showed IDWA. My ferritin had been higher before, but the quick onset of IDWA when I needed a steroid early this year, before I started most of the supplements, made my doctor think that my ferritin might have been artificially high from inflammation before.)

 

[Baz493]

I'm also finding that folinic acid seems to be doing something. For me, it seems to be helping with odd symptoms like bleeding when I brush my teeth. It's also seeming to cause some symptoms, but I'm hopeful that they're transitional and that things will settle down once my body is used to this.

I hope you're able to find some answers about your iron! I don't take a very heavy amount of it, but I know that taking a little can make me feel much better sometimes. (My latest labs showed IDWA. My ferritin had been higher before, but the quick onset of IDWA when I needed a steroid early this year, before I started most of the supplements, made my doctor think that my ferritin might have been artificially high from inflammation before.)

I have already been finding answers about the likely current cause of iron deficiency in me; going beyond the methyl groups. My health and function took a major downturn after treatment with benzodiazepines in 2014. I have been looking at PAP7 (benzodiazepine) receptor recruitment of DMT1 metal transporters as possibly being a trigger for excess cellular/neuronal iron levels and systemic iron deficiency. This would have been on top of the folate/methyl group issues; triggering a systemic crisis. I am already a fair way into recovery after this but still have to find a way in which to reverse the respiratory failure which resulted. Like yourself, I avoid consuming too much iron in my diet due to excess intake being linked with premature aging. The key, as I see it, revolves around nutritional cofactors needed for its use.