4/10/23 - Tulane University - Ehlers Danlos hypermobility linked to MTHFR defect, folate deficiency

[cheeseater]

Your other link cites more people saying they think that is what happens. You took methyl folate and had the same extreme tiredness as I did (part of one day) and jumped to the conclusion it was a sudden potassium deficiency. I would suggest that you (like me) simply needed to titrate the methylfolate better, starting with a lower dose.

I eat a healthy diet every day and get lots of potassium each day. Nothing wrong with being on the lookout for potassium or any other deficiency. Note that a true potassium deficiency entails a lot of different symptoms other than tiredness.

 

[Mary]

Hi @cheeseater - it's not as simple as you say. Yeah, I know most articles about refeeding syndrome stress that it affects people who have literally been starving but that doesn't mean they have the whole story. Chris Armstrong, ME/CFS researcher, has posited that persons with ME/CFS are in a chronic state of starvation, and I believe this to be true because I have to take high doses of several nutrients in order to feel halfway decent, which I never had to take pre-ME/CFS.

https://www.healthrising.org/blog/2...hronic-fatigue-syndrome-starvation-australia/https://www.healthrising.org/blog/2021/10/17/chris-armstrong-chronic-fatigue-syndrome-metabolism/
Also, if you'd bothered to read the Phoenix Rising thread I linked above, you'll see there is more than anecdotal evidence about potassium levels dropping and methylation.

fwiw, you're pretty new here. If you do a little looking you'll find many posts by persons whose potassium tanked after starting a methylation protocol.

Also, you might find the first interaction noted here interesting - I think another word for what happened here is refeeding syndrome: https://www.drugs.com/disease-interactions/cyanocobalamin,vitamin-b12.html

Also, take a look at this which lists hypokalemia as an advere effect of B12: https://www.statpearls.com/ArticleLibrary/viewarticle/91317

There's lots of info out there if you want to take a look.

 

[cheeseater]

Did anything ever come from the hunches of Chris Armstrong article you referenced? A hunch by someone with a PhD is still just a hunch.

The article you referenced about B12 causing potassium deficiency refers to massive doses of (non methyl) B12 that were injected. Potassium deficiency is listed as a possible side effect, yet there is no indication that the potassium levels of the subjects was checked before initiation of the large does (non methyl) B12 injections.

 

[L'engle]

Actually felt worse the last few times taking the methylfolate. Maybe it's only needed from time to time. Or a better brand. Oh well, I know to be careful with it now. (And I tried potassium, didn't seem to be the issue in this case, though it did also increase my need for potassium, as does MB12.)

Not interested in any arguments about potassium deficiency and whether it's a real thing or not because so many of us are living it. Won't be replying to anything along those lines.

 

[L'engle]

Maybe I need to add riboflavin 5 phosphate.

 

[cheeseater]

Maybe I need to add riboflavin 5 phosphate.

Please feel free to tell us about your thinking behind that. Might be of some value to others..

 

[L'engle]

I can't remember if it was here or in another thread but someone was mentioning riboflavin-5p-p as helping to tolerate the other b vitamins.

 

[cheeseater]

I think the biggest thing to tolerate something like that is to titrate properly. If you have some reaction, like sleepyness from methylfolate, start by halving the dose. If problem persists then half that. Then gradually increase if you think that is appropriate.

 

[Hufsamor]

I have terrible issues with b vitamins.
But at the blood work at my GP I’m rather low at folate, so I was looking back at advices I got from a clever nutritionist some years ago.
And then I stumbled over this thread.

One of his suggestions (which I never tried, at that time my health was steadily declining so I followed up some of his advices but never got as far as starting with folate again)

He said: stay away from methyl folate (as my body couldn’t handle it) You might be ok with small amounts of folinic acid, but only if magnesium stores are ok.

So there we are. I might try some small amounts of folinic acid this time, and see how it goes