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

[Bluebluesky]

I would like to know for how long others struggled with low potassium and other cofactor deficiencies (refeeding syndrome) after taking b12/folate or otherwise getting methylation going.

The two choices for each period of time might be a bit confusing. But like, for "1-2 months" it could be that you tried in say 2019, and it went on for two months, and then it stopped. It could also be that you started two months ago, so you know that it went on for at least two months, but not when it is going to stop. That is the "1-2 months and ongoing" option. I hope this clarifies things a bit.

If you have the energy I would also love to hear your stories about it below - as short or long as you would like to make it.

I may not be answering a lot, or i may answer with some delay - due to lack of energy.

I'm om my fourth year of struggling with low potassium after I started taking vitamin b12 - after at least 5 years of serious b12 deficiency. It's not only potassium, it's magnesium and sodium too, and a lot of other nutrients too.

 

[Mary]

@Bluebluesky - I started taking methylfolate in 2010, my potassium levels dropped quite badly then, and I had to start taking potassium (roughly 1000 mg a day in divided doses), and I've had to take it ever since. So I'm not "struggling" with low potassium - I just have to take it every day and it keeps low potassium at bay.

I do have to take a lot of nutrients daily, including potassium, magnesium, several of the B vitamins etc. If I have a deficiency in any of them, it never gets remedied.

So I'm not sure how to answer your poll - when you say 1 to 2 months and ongoing, or more than 10 years and ongoing, they're both true. It's ongoing.

Read this post by richvank which explains how and why people with ME/CFS can have low intracellular potassium despite normal blood levels and why potassium supplementation can be so important for persons with ME/CFS during methylation: https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

 

[Bluebluesky]

Wow, so that means 14 years and ongoing . So I was wondering if this would ever stop, and the answer is that it might not. That is probably the most important answer I could get.

I do, however, notice that it gets a lot worse when I introduce something that works. (I am testing all vitamins and minerals one by one.) And then after some time, typically after 3 months, the need for potassium eases down again, allthough I still need a lot. But it is more manageable. Right now it is sodium selenite as suggested by Greg Russell-Jones, and that really kicks ass!

I have been strogly advised agains taking potassium as a supplement and the one I tried really made my stomach hurt. But maybe I should make another try with another potassium supplement. When it comes to magnesium there is no way I can get enough orally and I spend hours every day with my foot in an epsom footbath to keep up with it to avoid migraines. I am going to try out boron after reading about in here.

I read the post you linked to. That is really a clear description, thank you! It makes SO much sense and accounts for all of it. It is just so frustrating that there is hardly any scientific papers to support it - to help counter the gaslighting.

 

[L'engle]

When it comes to magnesium there is no way I can get enough orally and I spend hours every day with my foot in an epsom footbath to keep up with it to avoid migraines. I am going to try out boron after reading about in here.

This sounds like me. I've had days over the years where the whole day was spent with my feet soaking.
Boron has helped with this. I was having to avoid lithium and vitamin d in foods and supplements to avoid run away magnesium loss (like cups a day to get to sleep).

Vitamin K (MK-4 for me) and A were part of the solution but boron is also fixing it to a degree. I needed just a small amount of magnesium last night (one 200mg capsule). The night before I slept for 9 hours without needing any magnesium.

I would suggest boron is worth trying. I wish I'd taken it years ago but it kept getting pushed down the list of things to try as it didn't seem very important and can sometimes be hard to find in stores. I paid 15$ and was able to cut down my magnesium that same night after 1 3mg capsule.

 

[maddietod]

How do you get your mineral levels checked? I recently asked my GP to test, and she changed the subject (and my brain didn't catch up in time to ask again).

 

[Mary]

I do, however, notice that it gets a lot worse when I introduce something that works. (I am testing all vitamins and minerals one by one.) And then after some time, typically after 3 months, the need for potassium eases down again, allthough I still need a lot.

You might be experiencing refeeding syndrome when you introduce new supplements. This has a good explanation of refeeding syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

Refeeding syndrome can be defined as the potentially fatal shifts in fluids and electrolytes that may occur in malnourished patients receiving artificial refeeding (whether enterally or parenterally5). These shifts result from hormonal and metabolic changes and may cause serious clinical complications. The hallmark biochemical feature of refeeding syndrome is hypophosphataemia. However, the syndrome is complex and may also feature abnormal sodium and fluid balance; changes in glucose, protein, and fat metabolism; thiamine deficiency; hypokalaemia; and hypomagnesaemia.

Right now it is sodium selenite as suggested by Greg Russell-Jones, and that really kicks ass!

What does sodium selenite do for you? Is it just a selenium supplement?

I have been strogly advised agains taking potassium as a supplement and the one I tried really made my stomach hurt. But maybe I should make another try with another potassium supplement.

What form of potassium have you been taking? I do well with potassium glycinate. Potassium citrate either caused or exacerbated a UTI for me. Also, I've read it's important to take it in divided doses - I take it with each meal, before bed and even middle of the night. Middle of the used to be one of my worst times for low potassium - I'd get lower leg and foot cramps or spasms from low potassium.

Low sodium V-8 or tomato juice are good food sources of potassium. They're low in calories and sugar, unlike bananas and sweet potatoes. Also, I'd have to eat a lot of bananas to get all the potassium I need.

I am going to try out boron after reading about in here.

What does boron do? And do you know what dose is recommended?

There is so much to learn and keep track of - it's mind-boggling!

 

[Mary]

How do you get your mineral levels checked? I recently asked my GP to test, and she changed the subject (and my brain didn't catch up in time to ask again).

One way is hair analysis. You can order this test yourself - I've used this place a couple of times and have been happy with them: https://hairanalysisreport.com/ - you can opt to have a written analysis of the results plus a phone consult with one of the owners. I found it useful. A doctor I had several years ago used to order this every year and it was helpful. Unfortunately he died.

Also Nutreval testing by Genova Diagnostics measures minerals, vitamins, amino acids, fatty acids, toxins, just about everything you can think of and Medicare has paid for it for me. But you need a doctor who's willing to order it and most doctors don't seem to know about it.

A blood test will show serum potassium levels - but with ME/CFS, as noted above, we can have "normal" blood levels of potassium but low intracellular potassium - see https://forums.phoenixrising.me/thr...ded-in-methylation-treatmt.18670/#post-283712

So your doctor can easily test your potassium levels, but they may not show the true picture of what's going on.

 

[Mary]

I would suggest boron is worth trying.

How much do you take? I take boron but have not noticed it decreasing my need for magnesium.

 

[L'engle]

How much do you take? I take boron but have not noticed it decreasing my need for magnesium.

I've just taken a few 3mg capsules. I noticed a difference after the first one. But, it decreased excessive magnesium need with a more normal amount of magnesium need, it didn't clear it altogether.

 

[L'engle]

Another angle: taking large amounts of magnesium itself causes more need for potassium. After my months of very excessive magnesium need a few years ago, and needing excess potassium in addition, it took ages for the potassium to normalize (years!).

 

[Bluebluesky]

This sounds like me. I've had days over the years where the whole day was spent with my feet soaking.
Boron has helped with this. I was having to avoid lithium and vitamin d in foods and supplements to avoid run away magnesium loss (like cups a day to get to sleep).

Yes, that was your post about boron that I saw. Your challenges with magnesium sounds so similar to what I deal with. The boron I ordered is due to arrive tomorrow, and I can't wait to try it!

Those practical issues with needing so much magnesium are hilarious! I have invented the mobile epsom salt handbath - one of those food storage silicone containers with the bath in it to go into my bag if I have to go somewhere. Or I wil get all dizzy and confused and utterly unwell. It must be such a relief to have it fixed or at least much better!

I have it with vitamin D too. Not sure if it is actual waste/loss, or more that the magnesium is utilized in some benign process (possibly to do with calcium and bone health) that is triggered by vitamin D.

What triggered the exessive need for potassium and magnesium for you (if I may ask)? For me the potassium deficiency started with b12, then some months later i realized that I was also heavily deficient in b6. Half a year before that I had realized that the cronic migraine that I had had for several years was due to magnesium deficiency. And then taking b6 accelerated the need for magnesium, but again, when you are deficient in b6 you can't take up magnesium, so I think I might just need a terrible lot of magnesium to restore.

But also there could be some "missing ingredient", and that might be boron.

Vitamin K (MK-4 for me) and A were part of the solution but boron is also fixing it to a degree. I needed just a small amount of magnesium last night (one 200mg capsule). The night before I slept for 9 hours without needing any magnesium.

If the boron doesn't work I'll certainly look into those other things that you mention.

@Mary thanks for your answer. I'll get back to you tomorrow! Soooo pleased to talk to you both!

 

[Bluebluesky]

Another angle: taking large amounts of magnesium itself causes more need for potassium.

Would you have a good link about that at hand? I'd certainly like to know more about that. If not, I'll just google it, so don't go out of your way for it.

 

[L'engle]

@Bluebluesky The potassium started with b12 as it did for you. The magnesium started after I'd taken lithium orotate, to try get around having to take b12 and potassium, as it improves uptake. It has gotten so I would need magnesium even from food amounts of llithium, from legumes and nightshade vegetables. The effect would show up after having vitamin d, but would be in proportion to the amount of lithium in the days prior. It's complicated. To be that sensitive to lithium I think must mean deficiencies in other things, hopefully just boron but perhaps there is still something else to figure out.

The mobile hand bath is brilliant! I tried tying baggies of epsom salts and water to my feet once so I could lie down while soaking them but they leaked and it was too tight on my ankles.

I discovered after some years that a full body bath keeps the magnesium more accessible when I needed large quantities. With a footbath I would usually have to resoak my feet sometime in the night, but with the full bath it would hold until the next morning if I used the right amount. However its much more of a nuisance to spend an hour and a half in the tub so I only did that when I needed large amounts.

Hopefully the boron helps you alot and you can escape the foot buckets for good!

 

[L'engle]

Would you have a good link about that at hand? I'd certainly like to know more about that. If not, I'll just google it, so don't go out of your way for it.

I can't remember offhand but if you google something like 'magnesium deplete potassium?' it may come up.

Here's one for example:
https://pubmed.ncbi.nlm.nih.gov/17804670/

 

[L'engle]

I think there was an article about lithium and electrolytes that I didn't get until I used 'Mg+2' in the search bar instead of 'magnesium'. It was all a few years ago. It's probably buried in some threads from around 2019.

 

[Bluebluesky]

You might be experiencing refeeding syndrome when you introduce new supplements. This has a good explanation of refeeding syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

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.

What form of potassium have you been taking? I do well with potassium glycinate. Potassium citrate either caused or exacerbated a UTI for me. Also, I've read it's important to take it in divided doses - I take it with each meal, before bed and even middle of the night. Middle of the used to be one of my worst times for low potassium - I'd get lower leg and foot cramps or spasms from low potassium.

Low sodium V-8 or tomato juice are good food sources of potassium. They're low in calories and sugar, unlike bananas and sweet potatoes. Also, I'd have to eat a lot of bananas to get all the potassium I need.

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!

What does sodium selenite do for you? Is it just a selenium supplement?

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 !

 

[Bluebluesky]

Boron arrived today and I took it a few hours ago. It might be a bit early to say something for sure, but it definately does something, and it definately feels good! I have a lot of neurologicql symptoms, all in the right side of my body, and now all of my right side is all tingling and buzzing with wakeup symptoms like when I first got b12. I think it might be helping with the need for magnesium too, but right now there is too much going on to tell, really.

Thank you @L'engle for sharing and suggesting this! I'll be back when I know a little more about what it does.

 

[Bluebluesky]

What does boron do? And do you know what dose is recommended?

Boron is particularly important for bone health. It works together with calcium, magnesium and vitamin d. There is an easy read about it here:
https://www.betterbones.com/bone-nutrition/boron-for-bone-health/

Apparently boron is rather overlooked, at least according to this interesting article which has 135 references to scientific articles about boron:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712861/

It says something about 'key biomolecules' which is over my head, but I recognize parts of it from things I read in here (SAM-e, NAD+). So that may make sense to some of you .

3 mg is the usual recommendation, but I've also seen a recommendation for 6 mg.

 

[Bluebluesky]

Hopefully the boron helps you alot and you can escape the foot buckets for good!

Haha, that made me laugh. Those buckets are our balls and chains! I hope you are still bucket-free!

After 24 hours it definately seems like I was deficient in boron. I get these wake-up symptoms and all tissue just feels better. Like this stressed/wrong/"sour" feeling in the muscles is gone. I took a quarter of a pill (0,75 mg) yesterday and that was too much for me for a start. So now I'm going low and slow.

it doesn't seem to lessen my need for magnesium. At least not for now. But that may still come when things settle down a bit.

Strange thing: I take a multimineral supplement with more boron in it than I took separately yesterday. But that hasn't at all had the same effect. And that is at leat the third time it happens that when I take a vitamin or mineral separately it has a whole other effect.

 

[Bluebluesky]

You might be experiencing refeeding syndrome when you introduce new supplements. This has a good explanation of refeeding syndrome: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440847/

I read more about refeeding syndrome and this is clearly it. Initially I was a bit sceptical because to me it seems to be all about potassium, and that is barely mentioned in the research about anorexia.

But then I read about the concentration camps and the poor victims dropping dead from hypocalemia on day 3. Guess what? I spent the night after my third day on b12 in hospital with a needle with a drop in my arm. I fainted and my neighbour called an ambulance. My electrolytes were all messed up.

I don't know if I should laugh or cry. THIS is the elusive ghost that I have been fighting for the last 4 years! It is so good to find that it has a name. But then it is so frustrating that the doctors didn't even check my vitamin b12 level when I started to get ill 10 years ago, and that the they know NOTHING about this whole thing. It is like the level of knowledge is going backwards. Both the role of vitamin b12 AND this syndrome were known and well described by scientists by the end of the 1940's .

Well, this whole tread went astray quite a bit, but I am so happy to have learned this, and I don't know who else to share my enthusiasm with ☀.