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Potassium burns

Discussion in 'General ME/CFS Discussion' started by manoj, Jan 4, 2016.

  1. manoj

    manoj

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    Potassium burns my stomach and intestines on the way down. I have tried potassium chloride syrup and potassium citrate syrup very diluted in water; same effect. From my reading of the other posts in this forum, I think i'm the only one in the world with this issue as no one has ever mentioned it. Everyone seems to be happily downing their potassium supplements. Anyone who knows a potassium supplement that is mild on the innards?
     
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    The only thing I can think of here is that you are the only person I've heard of who uses a syrup.
    I have no idea why that would matter though.
     
  3. shannah

    shannah Senior Member

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    Although I don't think I've heard others saying specifically mentioning that they take their potassium supplements with food, I think that is the generally accepted recommendation in order to avoid stomach burning.

    At least, that's what I discovered when I was researching it.

    I know that I need to take mine with food. I hope others will post what they do.
     
  4. Mary

    Mary Forum Support Assistant

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    @manoj - I agree with shannah, take it with food if you're not already.

    Also, have you tried potassium gluconate? It might be easier to tolerate. I initially started out taking potassium citrate and quickly discovered that it irritated my bladder and contributed to a bladder infection, and I've had no such issues with potassium gluconate.
     
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  5. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    In the days of rheumatic heart disease potassium tablets were notorious for been said to cause strictures of the oesophagus through irritation - because the tended to get stuck and erode the lining. I don't know if this is ever a problem nowadays.

    I wonder if there is any need to take potassium anyway? There is lots in food and being short of potassium is uncommon - almost entirely due to diuretic treatment. For most people if they take more it just gets peed out in the urine.
     
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  6. PatJ

    PatJ Forum Support Assistant

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    Potassium gluconate is very mild for most people. I take it with liquid or food and have never noticed any burning, even with high doses. From what I have read, potassium chloride is known for causing chemical burns which is why a lot of liquid is recommended to be consumed with it.
     
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  7. jimells

    jimells Senior Member

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    I supplement potassium because I am taking Florinef for POTS, and low blood potassium is one of the adverse effects of Florinef. I also drink salt water for POTS, so I add "No Salt" brand salt substitute potassium chloride to the mix. This eliminates the possibility of potassium pills causing any burning on the way down.

    A recent lab report showed that sodium, potassium, and magnesium were all slightly low or at the bottom of the reference ranges. I sometimes wonder just how these sorts of results should be interpreted: do they represent slightly inadequate intake of the nutrients, or the levels that biochemical processes have determined are "correct" for conditions? In other words, if I increased these nutrients, would they just make expensive pee, as you suggest, and blood levels would stay the same?
     
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  8. ahmo

    ahmo Senior Member

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    I use NOW potassium gluconate powder in footbaths. This spares my gut. Water enough to cover feet, comfortable temperature, 15-20 minutes. I didn't seem to need any more than by swallowing it.
     
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  9. Mary

    Mary Forum Support Assistant

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    Here is Richvank (again) on the special needs of people with CFS/ME and potassium. Read the first post on the thread. This is crucial information for people with CFS/ME regarding potassium:

    http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

    Also, I strongly urge you to read about treating megaloblastic anemia and the potential for sudden onset hypokalemia - lots of studies out there on this.

    Anyone who is involved with CFS/ME patients and their treatment should be aware of this.
     
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Mary,
    That post is RvK saying to take potassium if your blood level is low. Which is a no-brainer. But there is no reason to think people with ME/CFS will have a problem with potassium that I know of.

    Potassium might go low if you had a huge surge in red cell production after having a haemoglobin of 6 from PA, yes. But that simply doe snot apply to PWME with a haemoglobin in the normal range.

    I am sorry , but I can see no reason whatever to think potassium is relevant to ME unless you are using a potassium wasting drug like a corticosteroid. RvK was not a doctor as far asI know and what I have read of his posts seemed to be pure speculations, and rather muddled ones at that. Why should anyone take him seriously when he never actually published anything on this? Where do the facts come from?
     
    Last edited by a moderator: Oct 21, 2017
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  11. Mary

    Mary Forum Support Assistant

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    Actually, it said quite a bit more than that, and specifically stated that despite "normal" blood levels, PWC often have low intracellular potassium. And this wasn't speculation on the part of Rich - it was based on studies done in Australia.

    It would be great if PR had all the answers. It would be even better if our doctors had the answers. But most don't even believe we're sick, or as often is the case (such as official policy in the UK), prescribe dangerous treatment like GET, or useless CBT.

    So we come here and muddle through because none of the official medical people have the answers. And Richvank was one of the best informed and most willing to share his knowledge. I wish he were still here.
     
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  12. Mary

    Mary Forum Support Assistant

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    @Jonathan Edwards - And FWIW, I know it's purely anecdotal, but sometimes that's all we have, I have done better overall since I started supplementing with extra potassium 5-1/2 years ago, after reading Freddd's posts about folate and/or B12 causing hypokalemia, due to a sudden increased need for potassium when adding in folate and/or B12 when one was deficient.

    This made a huge difference for me. Without the potassium, I would have had to stop taking methylfolate because I hit a brick wall and felt completely exhausted a few days after I had felt so good after starting to take methylfolate. Methylfolate increased my energy and made me feel better in between crashing, or PEM. It didn't stop the PEM but it made me feel better overall, until 2 or 3 days after I started it and felt like s*t. Excuse my language but there's no other way to put it.

    And I know this is purely anecdotal and I have no research to back me up but I am eternally grateful to Freddd who first mentioned the issue of hypokalemia. I had had that horrible fatigue (different than PEM) on several occasions, never knew what it was, assumed it was another horrible CFS symptom, and then discovered it was low potassium after I started taking potassium. Coupled with the Australian study Richvank cites, it all makes perfect sense.

    And actually that's not accurate to say there is no research to back me up - look at the studies showing hypokalemia after treatment for megaloblastic anemia -

    I think there's a great research study waiting to be done on potassium and PWC, instead of just dismissing it as nonsense -- I wish doctors and researchers would LISTEN to their patients, instead of assuming they don't know what they are talking aobut -
     
    Last edited: Jan 4, 2016
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  13. minkeygirl

    minkeygirl But I Look So Good.

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    For those who don't know the huge contribution Dr. Rich Van Konynenburg made To PR. Always supportive, interested and helped so many of us because he bothered to look beyond conventional medicine

    And his uneducated suggestions on a course of treatments from labs I sent him a few years ago was dead on when I finally found a doctor Who knows how to treat ME and infections.

    A Tribute To Rich Van Konynenburg
    SEPTEMBER 26, 2012

    http://phoenixrising.me/archives/13738
     
    Last edited: Jan 4, 2016
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  14. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Dear Mary,
    I am listening hard. I have been listening on reading PR posts for about two years now - maybe more. I have tekan on roles as advisor to charities and become involved in research committees. Why? Because I would like to get some decent research set up to solve your problem. As a result we already have one study from UCL published and we have a whole group of new collaborations going. I spend an enormous amount of my time on this and have no commercial interest or pet theory to push. I think you are being a bit unfair.

    The problem is that in order to make any progress we need to see if the stuff people suggest actually holds water or makes any sense. The Australian study on intracellular potassium is of interest and I had looked at that before. But since the serum potassium was normal there would be absolutely no point in taking potassium supplements because ingested potassium will work through an influence on serum levels. If there is an imbalance in cell uptake (which I think is actually unproven and a bit unlikely) the potassium will fail to enter cells despite eating it.

    So if we want to follow science we have to make sure we are getting the chemistry right. Otherwise it is pretend science. RvK may have been very supportive in terms of taking interest but if his ideas were bad science then that is not being kind, it is unhelpful - pretty much the same as those who recommend CBT as far as I can see. I think we should dismiss things as nonsense if they do not make sense even in terms of their own theory.

    I am listening, listening, listening, but anecdotal accounts of 'I got better' are no use to me because I have spent forty years hearing that from people who quite clearly were just hoping they were better or had got better at the same time as a treatment by coincidence.

    If methylation protocols were really dangerous in terms of inducing hypokalaemia then it would be unethical to recommend them in the absence of any evidence of them being beneficial. A medical practitioner would likely be struck off for doing so. And nobody has that evidence of benefit in ME - that we can say for sure. Nothing is published and no data are available for public scrutiny. I find it hard to accept that someone who recommends a dangerous protocol of unproven benefit is being helpful. In reality I am pretty sure it is not dangerous at all but you cannot have it both ways.
     
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  15. Valentijn

    Valentijn Senior Member

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    I think this is a good point, and it's a big reason why I'm very uncomfortable with the use of large doses of methylfolate. A lot of people taking it seem to be constantly bouncing back and forth between too much or too little potassium, and without good indications of whether they're currently too low or too high, since the symptoms are pretty similar.

    Potassium can be a potentially deadly thing to mess around with, and when people are treated with large amounts of potassium by doctors, those doctors are keeping a close eye on them, and testing their potassium levels to make sure everything is going well. Going off of some guy's huge list of symptoms on the internet is a pretty reckless alternative to actual medical monitoring.

    For those who have forgotten, Rich VanK got good short-term results in a small trial of methylation supplements. Those good results disappeared in the longer term. He accepted that those good results disappeared, and that it meant that the protocol had failed.

    And I'm still not sure why so many people are so eager to tailor their methylation protocol to follow Freddd's. His reactions to various forms of folate is almost certainly due to a very rare genetic abnormality which the others do not share.
     
  16. Mary

    Mary Forum Support Assistant

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    I'm truly sorry you believe that anecdotal reports are useless. PWC have been telling their doctors for over 30 years that exercise makes them much worse and can actually be dangerous. However, because this goes against everything doctors have ever been taught, in the main they have ignored this, come up with insane theories such as "fear of exercise" (I think there should be a special level of hell for whoever came up with that idea), told us we were manlingerers, told us to exercise, causing serious damage, etc. etc. etc. Instead of truly listening to their patients, and saying, I don't understand it but you're not nuts, and maybe some valuable research would have been started a long time ago.

    In terms of potassium: I'm truly sorry you're dismissing reports from me and others that it has been extremeliy helpful. I wasn't just "hoping" to feel better. I've hoped for over 30 years, but almost nothing has helped, and when something helps, I notice big time. And it wasn't treatment "by coincidence". I notice very carefully how I react to every supplement I take. I can't make you believe me but there are enough people on this board who have been helped by potassium, that I think you should take notice of it. Yes,. we don't have the studies you would like, but that doesn't mean none of this is real. What it means is that studies should be done. In the main. people on this board are very well informed, most often more informed than their doctors.

    And again, I know you are aware of the potential for hypokalemia when treating megaloblastic anemia. Here's one link: http://www.mybwmc.org/library/41/033700 So it's not totally without foundation that taking folate or B12 in the presence of a deficiency would cause hypokalemia. The research is there.

    So this is what I mean by I wish doctors would listen to their patients, instead of dismissing things they don't understand.
     
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  17. PennyIA

    PennyIA Senior Member

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    I'll be honest. I'm pretty sure my doctor didn't believe me when I said I had diahhrrea 9 days out of 10; and dismissed my concerns. I was drinking plenty of water to keep from getting dehydrated, but not put on anything to treat the issue nor anything to help with electrolytes. I've since switched my diet enough that I only really have it about 6 days out of 30 now that I've eliminated a lot of my food triggers (it still triggers with my menstral cycle and a few times I get hit by a trigger I don't expect).

    BUT... my potassium and other electrolytes got really low as a result. Potassium is prescribed and I only 'sort-of' tolerate it. Lots of food before and if it still triggers, I eat more after I take it and it helps a lot with the burning.

    I don't tolerate magnesium at all as a supplement, though am looking into Boron to see if that helps... in the meantime, I seem to tolerate epsom salt baths which seems to absorb enough magnesium through the soaking that my blood tests come in low-normal.

    Low Salt has caused issues with low blood pressure - so I'm taking far more salt with my meals and also doing a poor-man's electrolyte drink with sweets and salt in it to try to bring my blood pressure up.

    It never even occurred to me to try to do true electrolyte drinks during the 5-6 years where I spent half my life in the toilet... wish the doctor either had a brain or was actually listening as it might have saved me years of issues caused by it.
     
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  18. manoj

    manoj

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    Thanks PatJ, i'm going to try potassium gluconate
     
  19. manoj

    manoj

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    Thanks ahmo, that footbath will be my last resort if potassium gluconate is also scalding my tummy...
     
  20. manoj

    manoj

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    Hi Jonathan, blood level potassium is no indicator of whether you need more potassium or not, as was discovered by Dr. Max Gerson.
     

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