Discussion in 'Fibromyalgia Main Forum' started by Godismystrength, Feb 24, 2013.

  1. I've been doing a lot of reading about low potassium, including some old posts on prohealth... But I still have some questions...

    I'm learning that those of us with ME/CFS are more prone to low potassium because of our mitochondrial dysfunction... and that even if our blood serum level for potassium is in the normal range, that our cells can still be depleted of potassium because of our cells' compromised ability to pump the potassium from the blood into the cells.

    That being said, I also read of the dangers of going the other way and getting too much potassium. So how do we know how much potassium to supplement with? And is there a lab test that measures potassium levels in the CELLS rather than just the blood?

    I also read that methyl folate can lead to low potassium... As well as B-12... And since I take 1 mg (1000 mcg) of methyltetrahydrofolate per day as well as 3000 mcg of sublingual B-12... Does anyone have suggestions as to how much supplemental potassium is safe to take?

    I realize that my potassium level was probably contributing to, if not causing, my horrible symptoms that kept getting worse over this past week. So my husband bought some 99mg potassium today and a couple hours after taking one, I felt my symptoms improving. I also ate a banana and had some V-8 juice which have potassium...

    Just not sure whether to leave it at one a day or take more? I don't want to go to the other end of the spectrum and take too much...

    Thanks so much for your help...

  2. IanH

    IanH Active Member

    How much potassium you can take depends on:

    If you have any kidney disease, low urine output or high blood pressure,
    If you have any cardiovascular disease or tachycardia,
    If you have ever had a stroke,
    If you are epileptic

    Those should be discussed with your doctor before taking extra potassium beyond the standard 99mg.

    Aside from those you could possibly take upto 2 grams of potassium per day, however, remember that potassium in whatever form you take is a salt so your kidneys need to deal with that.

    Also, taking oral potassium, in whatever form does not automatically equate to increasing intracellular potassium. It may help. However there is no biochemical evidence that taking potassium raises intracellular potassium in people with ME/CFS.

    Also, many people with ME/CFS have low blood volume, particularly in the brain so such people can be helped by taking additional sodium. So if you take extra potassium you need to think about your sodium levels as well. Many people who become ill reduce their sodium (salt) levels thinking it may be more healthy (and it may be but then it may not be).

    If you are going to take supplemental potassium, in whatever form then start slowly, 99mg twice daily for two weeks and so on.
  3. mbofov

    mbofov Active Member

    My experience with potassium is this. The rda is 3500 to 4500, depending on what you read. When I started taking methylfolate, my potassium levels tanked after a couple of days and I suffered horrible fatigue and lethargy. Based on Freddd of Phoenix Rising's recommendations, I titrated up to 1,000 mg. a day for a several days, then slowly went back down, and now take 400 mg. a day. It's made a huge difference for me.

    If you do the math, you'll see that 1,000 mg. is 25% to 30% of the rda and the 400 mg. I now take daily is 10%. I've run this by my doctor and he says no problem. He even offered to write a prescription for it but it was going to cost more.

    I started out taking potassium citrate, most easily absorbed I thought, but it irritated my urinary tract, I think contributed to and maybe even caused a UTI.

    I switched to potassium gluconate and have no problem with it.

    My potassium levels originally were at the bottom of the normal range, and now they are still lower than average, but have risen a bit, after taking potassim for some 2 years now (I think it's 2, maybe 3). Anyways, it's extremely difficult to OD on potassium taken orally. Yes, if you have kidney issues, it could be a problem, but most of us don't.

    And of course it is quite telling that one tablet made you feel better. I think you would be quite safe to take more. Just go up slowly, see how your symptoms feel. Like I said, originally I had to take around 1,000 mg., my levels were so low, but I got to that amount by going up slowly and observing my symptoms. And when they had abated for several days, I slowly went back down to my maintenance dose of 400 mg. a day.

    If you can get enough potassium in food, great, but it was too hard for me to do, largely due to calories.

  4. mbofov

    mbofov Active Member

    For more discussion re the methylation protocol and its effects on potassium, see:

    You will see that Rich Van K added a cautionary note about the potential for low potassium with the methylation protocol, and he was first alerted to this danger by Freddd of Phoenix Rising.

  5. ... For your helpful input... I'm still wondering though if there is a lab test for intracellular potassium??

    I also realize that I had decided to change my diet over a week ago to try something called a fruit and vegetable fast... It's something I did many years ago for about 6 weeks and it was the best I had ever felt... However, that was BEFORE the ME/CFS kicked in... and I had plenty of energy then to go to the grocery and replenish the produce every other day and also be creative with meals using only fruits and vegetables...

    But since I am so weak now, the reality was that I wound up not eating much of anything because I had little to choose from and no energy to prepare food, let alone shop... I couldn't even tell you the last time I was able to shop for groceries because of this DD... AND when I did the fruit and vegetable fast way back then, I consumed ALOT of vegetables... which I was able to do then, but not this time...

    So what I was hoping would help me, actually wound up harming me...

    I do still think it is a good idea to supplement with the potassium... I am def going to start out slow and monitor how I do... Maybe just two of the 99mg today, taken a few hours apart...

    I also realized that while I love baked sweet potatoes, I wasn't eating the skin, which is where all the potassium and nutrients are... I just didn't have much of an appetite and wasn't thinking straight...

    So thanks again for all your help. And Mary, thank you for the links... I had already read some of them... Sometimes the discussions on Phoenix Rising can be hard for my brain to process and digest... But I glean what I can... Thanks again...

    And Ian, I still would like your input on my supps that I'm presently taking... I also read that certain herbs can interfere with potassium absorption... I need to go back and list which ones....

    [This Message was Edited on 02/25/2013]
  6. MicheleK

    MicheleK Member

    Wouldn't our life be so much easier if when we took a supplement our body utilized it correctly?

    This is a running problem when you have a chronic illness like ME/CFS & FM because so many things we are low in is because the body doesn't absorb and send things to the right places. It can get pretty frustrating and raising levels of what we take sometimes helps but often also doesn't get where we need it to go.

    I am on prescription potassium at a dose of 20 MEQ. Over the counter potassium is usually 99 mg. per tablet. Prescription potassium is usually measured in milliequivalents (meq.); 1 meq. equals about 64 mg. About 10-20 meq. (640-1280 mg.)

    So a dose of 99mg should be safe as long as you are not a kidney patient or take a potassium sparing diuretics. Potassium is found in many foods also so keep in mind that you are probably getting good levels of potassium through your food. Only your doctor can really tell you if a higher dose is safe for you to try.

    Because ME/CFS patients often have adrenal insufficiency, this may be one reason why so many of us are found to be low in potassium time and time again. But also we have a neuro-immune disease and each cell in the brain needs both potassium and sodium to operate properly.

    I don't know if there are tests to tell you whether your potassium is getting where it needs to get in order to be utilized. Perhaps someone else may know something on that subject.

    If your muscles are not getting enough potassium they will become quite fatigued, clumbsy, painful, and even stop working.

    I have gone through that a number of times over the years and believe me it is not something that you can even ignore if you tried to. It is a very, very rough thing to go through. And the pain is not like the pain of FM or ME/CFS. It's different. You might even feel sensations of electrical impulses in those muscles that hurts like someone is electrocuting you little by little.
  7. LadyCarol

    LadyCarol Member

    Forget about taking a potassium supplement, they are not needed.

    Eat a jacket potato a day, simple to prepare, pop into the microwave for a few minutes and it's ready to eat. Apply your favorite dressings and it's a simple healthy meal.

    A potato is one of the best sources of dietary potassium and a potato contains lots of other useful nutrients.
  8. IanH

    IanH Active Member

    I doubt you can take too much potassium via your food. The problem with too much via supplements is only relevant to people with kidney and some neurological diseases. The point I made was to ensure that you do not take potassium supplements if you have any of these problems. Otherwise it should not be a problem.

    In fact it is a wise thing for some people (salt taste lovers) to replace some of their sodium chloride with potassium chloride. Many medical authorities would like bread makers (for example) to replace some of the salt with potassium chloride to reduce sodium intake. However there have also been cases where people have reduced their salt (sodium) intake with potassium and suffered kidney and electro-cardio problems as a consequence. In these cases the sodium/potassium ratio has probably gone below 1 for too long.

    In stating what I have, I have no idea whatsoever about people's (on this forum) state of their kidneys or cardiovascular system. That is upto them and their doctor not mine or anyone elses on this forum. Caution is always prudent.

    LadyCarol is quite right in advising us to get our potassium from diet, if we can.
  9. mbofov

    mbofov Active Member

    Potassium has been so important for me. Without it, I could not have continued taking methylfolate, and this folate has noticeably increased my energy. So I would have continued to have been stuck in low gear so to speak, all due to low potassium.

    And I later realized I had experienced symptoms of low potassium before even starting the folate (extreme fatigue, lethargy, just feeling horrible) and just thought it was another CFS symptom, although it was different than crashing (post-exertional malaise).

    I haven't had those horrible symptoms since adding in potassium to my daily regimen, although I do continue to crash regularly. Have not figured that one out yet.

    I'm really glad it's helped you. I think it could help a lot of people, but I think low potassium is probably very often overlooked. It was never brought to my attention until I read Freddd's posts on Phoenix Rising. My lab values were always "normal", but at hte bottom of the range. I am sure doctors never even look at actual values unless they fall outside that range, which does us all a great disservice.

    Oh my - I've gotten on my high horse here, but this is so important, so easily fixed, and so seldom recognized.

  10. mbofov

    mbofov Active Member

    Ian is quite right. I was a little glib I think re this danger. If you have bad kidneys you will have problems filtering excess potassium and could develop high potassium, which can be dangerous.

    But I would bet that most of us on this board have the opposite problem due to our mitochondrial problems and general inactivity.

    But, if you have kidney issues, then you shouldn't take potassium supplements unless directed by your doctor.

  11. IanH

    IanH Active Member

    I am not saying you should not take potassium. I was just checking on the precluding factors.

    Bear in mind too that serum potassium, when lowish is not a measure of anything. It is the intra-cellular potassium that is important. High levels of serum potassium means it is leaking from your cells, that would be a problem. Loading up on potassium has only marginal effect on intracellular potassium but maybe that marginal effect is significant in ME/CFS. There are certainly some who seem to be benefiting like Mary says. Doctors don't like it when you supplement on potassium because it can give a high serum reading which might spell a problem, unless they know you are taking extra potassium.

    This is similar to the vitamin D deficiency in ME/CFS. The std vitamin d test measures 25(OH)vitamin D but the active form is 1,25(OH)2vitamin D which is not measured because of its very low concentration and its variability. A low measure of 25(OH) vitamin D usually means low substrate to convert to the active vitamin D but it can also mean that the body is converting a lot of the 25(OH) vitamin to active form so depleting the blood level. So to say that people with ME/CFS (or any illness) have low levels of vitamin D can be misleading.

    However, as in most cases it is quite safe to take potassium or vitamin D3 at tested levels (potassium upto 2 grams and vitamin D upto 10,000IU) it may help.
  12. deepak

    deepak Member

    How much folate were you taking when your potassium levels dropped ?


  13. ...we DO have to keep it all balanced the best we can... I just wish I had a good alternative doctor who could help "quarterback" my treatment and supps... I have so many things going on in my body, that even with all my research, I feel like I'm just guessing at most of this...

    And if my sleep becomes a problem again, as it is now, then I go into a tailspin and crash and burn... It all gets to be too much sometimes...

    But thanks for your post and input, Jam... Glad you're doing better these days...