Poll about duration of low potassium (or other deficiencies) after b12/folate

[Mary]

@Bluebluesky - I also experienced refeeding syndrome when I started taking B1. It gave me a really nice energy boost for a day or two and then boom, severe fatigue. I thought, OK, potassium again, but that wasn’t the problem, potassium did nothing for this particular fatigue. and so I stopped the B1 because the fatigue was so bad. But I never forgot how good the B1 made me feel.

And a year or two later, I tried it again, same result, but this time I resolved to figure it out, and discovered that it caused my phosphorus to tank.. And in that article I linked above, hypophosphatemia is called the hallmark of refeeding syndrome. I had to do reading to find out Food sources of phosphorus, read that dairy is high in phosphorus, I drank several glasses of Kiefer, sure enough, my new awful fatigue abated. And eventually I found a phosphorus supplement, which I still take and still need.

Six or seven years ago, I tried to talk to an endocrinologist about this, but he scoffed at me and said refeeding syndrome only affects people who are starving or anorexic, and I obviously did not fall into either of those categories. He wouldn’t listen to me. So I ignored him too, and continue to take my phosphorus.

What I would love to see figured out is why people with ME/ CFS seem to be susceptible to this, when an average person generally will not experience refeeding syndrome, symptoms when replenishing nutrients. Several years ago, my sister, who had been a vegetarian for many years, start developing neuropathy, numbness and tingling on various parts of her body it moved around. I suggested she try B12 and it rather quickly fixed the problem. But her potassium did not tank like mine had. But it seems to be very common for people with ME/CFS to have their potassium tank when starting, B12 or methylation, and perhaps developing hypophosphatemia when starting B1 like me. A Few years ago one other person here posted about hypophosphatemia and B1 but I can’t remember who that was.

I think this might be a clue to what the heck is going on with ME/CFS. I think it was Chris Armstrong, who postulated that persons with ME/CFS seem to be in a chronic state of starvation,

 

[L'engle]

Yes it seems a lot of the knowledge about natural medicine and nutrients has been brushed aside as been old-fashioned or something. Like it was found out 100 years ago but what did they know then?

The articles about nutrient interactions often seem to go back to early discoveries in the 1920s or thereabouts. Maybe it's different in Europe where naturopathic medicine is not considered with such suspicion.

I've met several people over the years with various problems who say 'i don't believe in supplements' and just go on having their problems, with no solution, indefinitely. Which is not to say we can fix everything with vitamins but there is such suspicion that many don't even try.

 

[Bluebluesky]

Yes it seems a lot of the knowledge about natural medicine and nutrients has been brushed aside as been old-fashioned or something. Like it was found out 100 years ago but what did they know then?

The thing is that you can't earn money on vitamins. Because they have already been invented, so no patents possible. And that means that there is no money for research. And that moves the focus of doctors into medicine, medicine, medicine. So it is really about big pharma. But if you point this out people will immediatly suspect that you are anti-vax and probably believing in conspiracies. Or at least that is what seems to be true to me.

Maybe it's different in Europe where naturopathic medicine is not considered with such suspicion.

It might be different in Germany. But in Denmark it is very much like you describe. In some ways I think you are better off in the US because you have functional medicine doctors. I love our welfare systems, i really do, but it creates a monopoly of truth about health, and right now the "truth" from the health autorities is more or less that you hardly need vitamins. (And that whatever they can't figure out is probably somatization.)

In Denmark there has been a study a few years ago that showed that people have no effect from multivitamins at all. Like they had the same amount of deficiencies as people who didn't take vitamins. (That IS thought provoking in itself.) And then the study went on to say that at least multivitamins are a waste of money. And a lot of doctors seem to understand this like 'vitamins in general are a waste of money and you can't really be deficient in anything'.

I've met several people over the years with various problems who say 'i don't believe in supplements' and just go on having their problems, with no solution, indefinitely. Which is not to say we can fix everything with vitamins but there is such suspicion that many don't even try.

Yes, the thought about how many many people who could probably have better lives, just starting with low iron and low vitamin d, Is frustrating. But they really don't want to know - and that is their choice.

 

[Bluebluesky]

I think it was Chris Armstrong, who postulated that persons with ME/CFS seem to be in a chronic state of starvation,

Yes, it is cruel. You can take away one key nutrient or block one process in the body and people will starve to death for no obvious reason.

What I would love to see figured out is why people with ME/ CFS seem to be susceptible to this, when an average person generally will not experience refeeding syndrome, symptoms when replenishing nutrients.

Now I pop into this from b12 deficiency forums (or b12 information bubbles) since I realized I was b12 deficient before I got diagnosed with ME. And I am not quite sure how b12 deficiency and ME relate to each other. Symptoms are so similar. But coming from this other information bubble I would think that it was maybe the other way round - that people with long lasting serious b12 deficiency would develop ME AND get serious refeeding syndrome. But there are so many things that are new to me here, so I'm basically just confused but nevertheless quite happy 😊.

I drank several glasses of Kiefer, sure enough, my new awful fatigue abated. And eventually I found a phosphorus supplement, which I still take and still need.

Thing is - I drink a lot of yogurt and similar products too, like 3 cups a day, and that hasnt helped. I might want to try that supplement. But right now I have my hands full with boron and iodide and selenium.

 

[L'engle]

I still get problems with b1 even with lots of dairy and other phosphorus. I read somewhere on a thread that it can deplete zinc. I always need zinc so taking b1 as well can be tough. I haven't tried it for a while.

 

[L'engle]

I love our welfare systems, i really do, but it creates a monopoly of truth about health, and right now the "truth" from the health autorities is more or less that you hardly need vitamins. (And that whatever they can't figure out is probably somatization.)

Unfortunately it's like this in North America too. People with means can pay out of it but if you need to interact with social services, the word of a naturopath or TCM (traditional chinese medicine) doctor doesn't carry much weight.

 

[jason30]

Yes, it looks like it. Seems like this refeeding syndrome and the link you shared first about potassium and methylation could be two perspectives on the same thing.



It was potassium chloride. Thank you all for the recommendations! I'll try one of the forms you mention. Tomato juice is a winner for me too!


Sodium selenite seems to enhance the improvements in brain fog that I already had from iodine and yet more from iodide. And I feel better overall. And then there is this augmented need for potassium, which I take as a sign that something good is going on.

I am trying out the paradoxical b12 deficiency theory by Greg Russell-Jones, which says that b12 (and b2 and b6) won't work if you are deficient in molybdenum, selenium and/or iodine. He is very specific that it should be sodium molybdate, potassium iodide, and sodium selenite or it won't work. So he says, and that is exactly what I observe too. Other forms of molybdenum and selenium don't work at all, and iodide works much better than iodine. So that is rather fascinating.

Iodide and sodium selenite helped with brain fog. Molybdenum helped with a lot of weirdo problems, most of them with my right eye, like problems with too much and too little pressure. No improvement for fatigue, though - at least not for me.

Yes! So many new things to look into and learn! It is all so fascinating 🧙!

Be aware that the selenite version is toxic! I couldn't tolerate it!
https://pubmed.ncbi.nlm.nih.gov/7198759/

 

[Bluebluesky]

Be aware that the selenite version is toxic! I couldn't tolerate it!

Thank you for the warning, and I'm sorry for the late answer. Right now I'm at doses less than than the recommended daily intake, and it doesn't seem to do anything bad.

Might it be that it is toxic in high doses? How much did you take? What were your symptoms?

 

[jason30]

Thank you for the warning, and I'm sorry for the late answer. Right now I'm at doses less than than the recommended daily intake, and it doesn't seem to do anything bad.

Might it be that it is toxic in high doses? How much did you take? What were your symptoms?

Could be in high doses, but that's also very individually. I have for example heavy metals toxicity and can't handle any supplements/ingredients/chemicals which are toxic.