The 12th Invest in ME Conference, Part 1
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Serum potassium versus RBC potassium

Discussion in 'General Treatment' started by BadBadBear, Feb 8, 2018.

  1. BadBadBear

    BadBadBear Senior Member

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    Hi - I've been having PVC's recently, and also some air hunger which seem to be resolved by potassium. However, my last serum potassium test a couple of months ago looked fine, I think I was at 4.5 which is higher end of normal range.

    I am planning to go have a CBC and CMP done tomorrow. Will a RBC potassium test tell me anything useful? Has anyone found it to be a worthwhile test?

    I think the potassium issue is because I restarted methylation. I'm taking 800 mcg methylfolate, 500 mcg mB12 (or sometimes using the oils). Its not high dose, but last time I started methylation some years ago it really dropped my potassium drastically.

    My doc wrote me a script for 10 MEQ slow release potassium tablets, 2x per day. Just want to be sure I need it before I start it, and it's time to check my liver enzymes anyway.

    TIA-
    Michelle
     
  2. Ema

    Ema Senior Member

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    Potassium is meant to be inside the cells, whereas sodium is meant to be outside. So if potassium is low in the serum, you can be almost certain it’s low in the cell too. But if it is “normal” in the serum, it could be low or normal in the cell, so the RBC cell test can provide some useful info.

    FWIW, I consider 4.5 to be optimal for my serum level.

    That said, 20mEQ is the dose according to the package insert just to maintain potassium levels, so I do not think you will be risking too much to try the 10mEQ your doctor has prescribed and just seeing how you feel.
     
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  3. BadBadBear

    BadBadBear Senior Member

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    Thanks @Ema - I feel better on the 10 MEQ BID, but then I have some palps mid day so I added a bit more potassium chloride (500 mg of KCl which is probably around 250 mg potassium) and it seems to calm them down. Last time I went low, it took 40 MEQ for a couple of months to catch up! I am really hoping it hasn't gone that low again. Ugh.

    I guess I could save money and just do the CMP, and if its low do the RBC. But that involves two needle sticks, which offers no savings in terms of pain. :)

    I should have some answers tomorrow.
     
    Ema likes this.
  4. Mary

    Mary Forum Support Assistant

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    @BadBadBear - here's a post by former member Richvank (who unfortunately died suddenly a few years ago) which explains why people with ME/CFS often tend to have low intracellular potassium despite normal serum levels. And starting methylation can exacerbate the problem quite suddenly and severely, as you've experienced: http://forums.phoenixrising.me/inde...ded-in-methylation-treatmt.18670/#post-291422

    When I started taking methylfolate in 2010, within 2 or 3 days my potassium levels tanked quite suddenly My chief symptom was severe fatigue. Fortunately I had read Freddd's posts about potassium and methylation and so started taking potassium titrating up to 1000 mg a day over a couple of days, which resolved the fatigue. What was very interesting to me was that I had had that awful fatigue off and on before I ever started the methylfolate (I'd already been taking B12 forever), and never knew what it was. I thought it was just another inexplicable horrible ME/CFS symptom. So I've been taking 800 - 1000 mg potassium gluconate daily ever since and only rarely do I get symptoms of low potassium now, mainly I will get twitches or muscle spasms in my feel or calves. I even take it before bed because it was quite common for me to get cramps in the middle of the night.

    You can try drinking a few glasses of low-sodium V8 or vegie juice which is high in potassium and see if it helps your symptoms. You may need to just supplement with extra potassium on a regular basis. I don't think the CMP by itself will likely give you useful information, unless it was low. My levels were always normal on blood work. I've never had an RBC potassium test, it might be helpful. I just treat myself based on how I feel.
     
    BadBadBear likes this.
  5. Sundancer

    Sundancer Senior Member

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    what a great forum this is.

    I started with methylcobalamine, then found this forum ( as per having enough clarity in the head) and Fredds protocol which told me about the potassium tanking.

    So I could see why I felt dehydrated, dry skin, cracking lips and an awful constipation. Now titrating potassium-citrate. Every day a little more until I feel I've reached a balance. Then I'll keep ( hopefully) that balance for a while until I add another thing/ or go up with B12.

    I'm sort of wondering whether I should take the potassium after a meal ( which is not OK for digesting my food, adding too much water to my stomach) or keep getting it between meals as I did before. Reading about how it could hurt the gutlining...But I suppose when I mix it with enough water that would not be much of a risk, i may need to use a ittle more water.

    and the funny thing is, It tastes bitter, wich normally is not my kind of taste. But it tastes actually very good. So maybe when I have enough it will start to taste horrible.

    yesterdays my heart began to behave more funny then usual, mainly it felt like like it thumped too hard and it skipped beats too. So I took a mug of potassiumwater and half an hour later the heart was OK again, yeah!
    Without all this info I would have been at a loss.

    Grateful too for the thread you gave @Mary , more useful information.

    err...
    I'm now on 400 mcg folate
    2,5 mcg adcob
    2 mg metcob
    and I take 3 x 448 mg potassium, bottle says that is 3x10% of daily need, but I will raise the dose. I'm definitely not there yet.
     
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  6. Mary

    Mary Forum Support Assistant

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    Hi @Sundancer - this IS a great forum :thumbsup:

    I take potassium gluconate in capsule form after meals (except I take it at night too before bed on an empty stomach). I take it with the rest of my supplements so obviously have to use some water, but not a lot, so you might try that. The main caveats I've read are to take it in divided doses (not a huge amount all at once) and to work up gradually.

    Initially I started with potassium citrate but I found it irritated my bladder and contributed to a urinary tract infection. I then switched to potassium gluconate and have had no problem with it since.

    I'm taking about the same amount of potassium or a little less than you are, and it works for me, but there are people on the board who need more, we're all different - good luck! :)
     
    BadBadBear likes this.
  7. Sundancer

    Sundancer Senior Member

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    thanks, i chose the citrate because I've a horrible constipation, even use a laxative once in a while. So citrate is OK for me, never had bladderproblems either, happily.

    Much drinking is OK too for that reason and I prefer to take anything that can be dissolved and drunk over capsules, cheaper and no fillers. Gut is very sensitive for those things.

    I'm on a two-pronged approach now with the constipation, I upped the dose of vitamin c to a large amount, and I added bifido infantis. I know that has once helped and I also got histamine problems from the methyl. Bifido can help there too. Itch is decidedly less now. I did go back to my stricter dietary guidelines and that may well have added to both constipation and potassium need (among other things I did quit potatoes). I really think the potassiumctrate is helping in that department too so hopefully in a few days that will be solved.


    I've been reading on another thread and decided now to take potassium before sleep too. Cause I get a those heart things in the night now too. No cramps though, i read everywhere about cramp things but I mainly feel dehydrated and the potassium helps much better than drinking sole.

    after that I'll add some minerals that I've not taken before because I reacted badly on them. I know why I could not handle the zinc and that may be better now, but I'll start mighty low.

    Do you know of any reason that people react badly on calcium? I'm a wimp really, I do not fancy getting worse again, but I should try it.

    oh, and another question, My GP just called ( about something else ) but he also told me my B6 in the blood is way too high. Is there any relation with the B12/methylation-thing. Folic acid is much too high too, but I gather that will lower itself now. Is that the same for B6?
     
    BadBadBear likes this.
  8. BadBadBear

    BadBadBear Senior Member

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    I have used potassium bicarb for a very long time, but only in small amounts. It has almost no taste at all to it. I also have some potassium chloride for a different electrolyte mix, and it doesn't taste as good.

    My heart was pounding last night around 2 AM, so I got up and had some Calm Mag + some potassium bicarb and it seems to quiet things down.

    The first time my potassium tanked, it definitely depleted my serum potassium - it was around 3.7 that time and I felt horrible with achy legs, etc. The slow release tabs brought it back up, and I continued with methylation after that until least year and my potassium needs definitely stabilized. However, my heart worked fine back then and it never caused palps. 4 years later, and things have gotten worse for sure.
     
  9. BadBadBear

    BadBadBear Senior Member

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    Dang, I am glad I did my labs. My serum potassium is at 4.8, which is actually up from where it was. And my sodium is at 136, which has ticked down a point and is officially the lowest it has ever been. :(

    The lab said to do an RBC potassium, I actually have to be there at a specific day, as results have to be processed in 72 hours, and they send it to Ward who sends it onto another lab... So I didn't have that one run at this time. But next time, I'll have it done on Monday and see what the result is.

    On the upshot, my vitamin D is at 100, highest ever. I think being on Famvir is decreasing viruses and making a difference in my chronic D depletion.
     
    jason30 likes this.

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