The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Fludrocortisone / Florinef and potassium

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Bowdon, Sep 22, 2015.

  1. Bowdon

    Bowdon

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    Hi all,

    I've been on fludrocortisone for quite a while now for hypotension, related to adrenal fatigue.

    When I was perscribed it I had no instructions on how to use it. I gained knowledge by looking up on the internet what other people do when on it.

    I was perscribed .1mg (one tablet). Though for quite a long time I only needed half a tablet. That was until Kings brand of fludrocortisone stopped selling them to the chemist and now I get the Squibb 429 brand. I found that just taking half a tablet each day was too little. So I was trying 3 quarters of a tablet every other day.

    I started experimenting in having 3 quarters as my normal dose.

    But since I went to 3 quarters I'm having some issues. I've tried going back down to half a tablet. But I go back to feeling light headed and weak.

    The longer I've gone on using 3 quarters the more weaker I've become. In the last few days its become very noticable. I've noticed that the water I'm drinking is going through me, even if I add in salt.

    One thing I've never tried with fludrocortisone is taking potassium. I've read that being low on potassium can cause the problems I've had.

    I tried to get some blood tests done. But my doctor is on vacation until next week.

    What are peoples advice on potassium while on fludrocortisone. Do many people take added potassium, either via supplements or specific foods?

    I'm thinking of trying to eat potassium rich foods. As anyone had any success doing that?

    Thanks for any advice you guys can give, and also thanks for listening to me.
     
  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    My son had the same problem when the manufacturer of Florinef was changed at our dispensary. When he switched back to the brand that worked for him from Barr Laboratories, it's effectiveness returned. I called around to all of the pharmacies in the area until I found one that carries his brand, we shop there now. You might try the same.
     
  3. Bowdon

    Bowdon

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    I noticed your message on another thread about that when I was searching for florinef information.

    It was very annoying when they just changed the manufacturer without telling anyone. I was thinking there was something majorly wrong at the time.

    I wish that a similar thing had happened now, as this feels like I'm being put back to how I was before I went on florinef. It's disappointing drinking some water then having to go to the toilet 5 minutes later and peeing it all out. I wish it would stay in.

    At the moment either I have low potassium or I need to increase my dose of florinef. Though I'd have imagined if it was me low dosing that the salt would still work to a certain degree?
     
  4. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    If the old Florinef worked, try to find a way to go back to it.

    I don't think it's really possible to know if your potassium is low without a blood test.

    Others on this forum have spoken of desmopressin, you might search PR for it and see if you think this might be worth talking with your doctor about.
     
    SOC likes this.
  5. Ema

    Ema Senior Member

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    I agree that you can't really know about potassium without a blood test. And it's important to get it right, because both too low and too high are potentially very bad.

    That said, Florinef is a known potassium waster and most (healthy) people can handle up to 20 mEQ of potassium a day without issues. So if you are buying over the counter potassium, you are unlikely to cause yourself too many problems if you try a little. You may also not see any results though.

    When I was taking Florinef, my potassium needs ranged from 80 mEQ a day to 0. So there can be a lot of variation even for the same person.

    How much salt are you taking? Is it a good form, like Celtic sea salt? 2-3 teaspoons of day is not unreasonable while on Florinef.
     
    Jenny TipsforME and ahimsa like this.

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