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Florinef Question-Will Be Starting it-Need Guidance

Discussion in 'General Treatment' started by Misfit Toy, Apr 5, 2017.

  1. Misfit Toy

    Misfit Toy Senior Member

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    Hi everyone,

    Due to the never ending inability to get my thyroid medications regulated since the thyroidectomy for several reasons and one of them being adrenal issues- I am being put on Florinef.

    I had a thyroidectomy and was suffering with adrenals beforehand. My BP today was 90/50. I have been unable to get out of bed for about 3 weeks now. I am so dizzy.

    My doctor is putting me on florinef, but I don't know what dosage. He mentioned nothing about salt loading.

    Can someone advise as I am super sensitive to medication? Is it a pill or capsule and can you cut it in half if it's a pill? @taniaaust1

    I love my doctor but gosh, why doesn't he tell me I need salt? I am ingesting salt and E-lyte anyway, but he never mentioned I need salt with it.
     
  2. Sushi

    Sushi Senior Member Albuquerque

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    You also need to have your potassium checked regularly--did he tell you that?
     
  3. Misfit Toy

    Misfit Toy Senior Member

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    Honestly, I am just so disgusted by this Sushi. I always have to read everything he prescribes and do my own research. He doesn't know or reveal any info. NOTHING.

    I am so disgusted. No. He didn't tell me that. I know nothing and I am reading all I can find on here. If anyone has anything to reveal, reveal. UGH. I want to scream.

    I just started LDN and am scared to try this too at the same time. I have so much going on at one time, it's ridiculous.
     
    Last edited: Apr 5, 2017
  4. Sushi

    Sushi Senior Member Albuquerque

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    It could be confusing to start them at the same time as both give about half those who try them side-effects. I had bad headaches on Florinef and wasn't able to take it.
     
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  5. Misfit Toy

    Misfit Toy Senior Member

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    @Sushi -I know. He asked me to overlook it due to the fact that I am so ill. I am on .5 of LDN but I know both can cause side effects. For me, it's always a toss of the dice.

    A few weeks ago be put me on iodine and I had a major reaction to it. I told him I was constipated for days and wired and that I learned it causes you to release bromide and he was like...."Oh, yes, that can be a problem." I had no idea about bromide or any of it. He never said that.

    I love him, but he literally gave this for me to take today;

    Quercetin
    B5
    More Zinc
    Enterogam for my gut
    LDN
    Florinef.

    :bang-head: o_O
     
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  6. Misfit Toy

    Misfit Toy Senior Member

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    An admin from an LDN site says it contains Fluoride. What? Does anyone here know about this?
     
  7. Sushi

    Sushi Senior Member Albuquerque

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    Never heard that. I quick Google and it seems that Fluoride interacts with LDN.
     
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  8. Misfit Toy

    Misfit Toy Senior Member

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    @Sushi -thank you so much for letting me know.
     
  9. taniaaust1

    taniaaust1 Senior Member

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    Hi Misfit Toy, I just saw you'd flagged me (I hadnt checked that for ages so you've got very lucky Ive seen it).

    With the florinef, its very small pills but the are scored down the middle of them so its easy to get them in halves with lining up the score with a pill cutter (cause of their size its not as easy to break them in half with fingers). To quarter them, I do that with pill cutter too but at times they crumb some on doing this so that's not so easy.

    With florinef as for using it with POTS it acts on the salt in the body.. helps hold onto this so to raise blood volume. You should take plenty of fluid with these and make sure you have adequate salt. (salt loading with extra fluids is usually tried before even starting florinef).

    I recommend starting these how my specialist started me on these which was only a quarter of a pill at first. You should work up dose with them to make sure you are fine with these. Then I think it was about 4 weeks later of taking daily quarter pill, we went up to half a pill dose per day He tested my potassium levels before I started these and did a potassium test to check my potassium levels again at half a pill (he may of checked it also at the 1/4 pill dose).

    Some time later, a few months or more later, it was when I could get to another appointment (I could notice possibly slight betterment with half pill dose though wasnt fully sure), my dose was increased from half to 1 pill per day which further improved how they work for me. (Ive never got any negative symptoms from florinef). Note as these can affect sleep so take it in morning and should be taken after eatting.

    He did tell me from the start to take one banana a day while on florinef as it can drop potassium and bananas are good for potassium.

    If the dose is going to work, you will find it works very quickly as this isnt a drug which one has to wait for it to build up in the body.

    Some people with the low blood volume may need 4-6 grams (or is it up to 8g? I forgot) of extra salt per day.

    Florinef can be good to use too in conjunction with medical compression stockings was well though if you are laying in bed, these probably may not be a good idea though I used to wear mine all the time.

    My specialist was relucutant to put me at any higher dose then 1 pill per day as he says people adapt to this so in his view it isnt a good idea but it isnt uncommon for some specialists to allow their POTS patients to try up to 2.5 pills per day (but make sure if you do something like that to have your potassium checked at times). The hospital has told me I can trial up to 2.5 pills.. (ive only though trialed it up to 1.5 pills per day due to my specialist views on it. I may though trial it higher in future).

    Cause this drug acts so quickly, I dont think it shouldnt be too hard to be able to distinguish any possible side affects of this from whatever else you are trialing, it will probably be quite obvious if you are reacting poorly to it. I do suggest though dont start anything else at exactly the same time.. I suggest to wait a week on this (that should be enough for you to get some idea how it will work for you at that dose) before trialing your next med or whatever with it.

    I suggest if he gave you a list of things to newly trial, to trial this one first seeing you should know quickly how it goes for you where as some of those others affects may come in with time.

    Let us know get on with it.
     
    Last edited: Apr 11, 2017
  10. Misfit Toy

    Misfit Toy Senior Member

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    @taniaaust1 -you rock. Thank you so much!! I haven't started it yet due to trying LDN and so many balls in the air, but I plan on going on it. :thumbsup:
     
  11. @taniaaust1 I've just read your post, and it's so useful as I'm about to start Florinef. Question, how much salt should I be taking before I start Florinef? Is extra on food enough, or do I need salt tablets?
    Thank you to anyone in advance that can answer this!
     

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