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Did anyone do a trial of thyroid drugs?

Discussion in 'General ME/CFS Discussion' started by BRISWHARF, Jul 16, 2017.

  1. BRISWHARF

    BRISWHARF

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    A couple of weeks ago I did a 7 week trial of nature throid drugs.
    I have severe fatigue. My thyroid blood test results were normal, but only just normal so my doctor allowed me a trial.
    All it did was make my fatigue so much worse. It gave me much worse heart palpitations, tingling face, ringing in ears and freezing feet.
    I've stopped taking it now (2 weeks ago now). Still have these symptoms - guess it takes a while for the drugs to leave the system?
    Wondering if anyone else did a trial too and it just made them feel worse?
    I also tried LDN last year and that just made me feel much worse too.

    Thank you ☺
     
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  2. belize44

    belize44 Senior Member

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    Yes! I tried Naturthroid and it made my heart palpitations much worse, to the point that I couldn't sleep at night. And my fatigue and tremors increased as well. After three weeks, I just stopped it and my blood pressure shot up to scary heights the following night. While I am not glad that it happened to you too, it's a relief to know that I am not the only one!
     
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  3. BRISWHARF

    BRISWHARF

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    Thanks for your reply! I'm glad to know I am not the only one too!

    I chatted to some people on a thyroid website and they told me not to stop and to increase the dose instead. My gut instinct said no! Literally couldn't cope with it so I stopped.

    I'm guessing after you stopped taking it you went back to how you felt before you started it?

    I still feel dreadful but I was on it 7 weeks (now off it 2 weeks) but maybe I need to give it longer to get out my system.

    Thanks!
     
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  4. belize44

    belize44 Senior Member

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    When I first stopped it, I felt a bit better, but my heart beat is still very irregular even though it has been a week since stopping it. Now i am back to feeling lousy, achy and tired again. :(
     
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  5. drob31

    drob31 Senior Member

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    Many times the issue is that the hpa-axis doesn't cooperate with higher levels of thyroid hormone. Cortisol is required for the cell to access t3. Many times you have to fix that first or it can make it worse.
     
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  6. belize44

    belize44 Senior Member

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    My doctor tried that; he had me start on Cortef and I got so tired I was napping every day as well as a worsening of tremors and weakness. Now I am stymied!
     
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  7. drob31

    drob31 Senior Member

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    Yeah, it's really complicated. High cortisol can also block cellular uptake of thyroid hormone. It's very hard to get the timing down and your body likes to follow a circadian rythm. Also if there was any t4 in your meds, your body could have been converting it rapidly to rt3, thus forcing you to go hypo.
     
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  8. BRISWHARF

    BRISWHARF

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    Sorry to hear the cortef didn't work either. I haven't tried that but not sure if I'd be allowed that as I did a 24hr adrenal test and it was normal.

    What's your plan to try next?
     
    belize44 likes this.
  9. Wonko

    Wonko Senior Member

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    The other side.
    I was on NDT for several months, between 1 and 4 grains a day. I was only planning to test it to see if it worked for a week or 3 and if it did then get a full thyroid screen to give to my doctor. It worked, it didn't get rid of, or much touch, my M.E. but it did get rid of, or decrease, a lot of secondary symptoms that have come on over the years that I had assumed were just part of the M.E.

    However when I tried to come off it the payback was severe, everything came back all at once and it was too much for me to handle, it was completely intolerable, even with opiate based pain relief. So I caved and was on it for several more months, with gradually decreasing effect.

    Knowing how much it affected me when I came off it I decided to stop taking it a few days before a PIP medical assessment (UK disability benefit). Result - no negative effects, also no PIP award.

    I can only assume that either the NDT gave my possibly struggling thyroid a rest, but after several months rest it was able to take on the load itself, or that the extra cortisol/adrenaline in my system in the run up to and during the assessment had effectively reduced the impact that the NDT was having to a point where just stopping them without negative effects was possible i.e. the stress weaned me off them.

    I am currently trialing T2 which appears to have insufficient effect to be worth it's cost so far, I've only been on it less than a week but it's supposed to be fast acting (i.e. within a few hours).
     
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  10. belize44

    belize44 Senior Member

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    When I next see my doctor, we will have to devise a new game plan, I guess. In the meantime I have sent away for the 23andme genetic test to see if there are any clues there!
     
  11. belize44

    belize44 Senior Member

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    This is what I had hoped would happen when I started the Naturethroid.
    I'm thinking that this is what happened when I stopped it, but the result was different; I had that scary spike in blood pressure that lasted about six hours before settling down (after I threw Magnesium Taurate, Aloe Gel, Tulsi tea, Potassium, sea salt and Epsom salt soaks at it.)
     
  12. davery

    davery

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    what other thyroid drugs did you try?
     
  13. belize44

    belize44 Senior Member

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    If you are asking me, I have tried other thyroid drugs in the past thirty years.
     
  14. invisiblejungle

    invisiblejungle Senior Member

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    Hi Briswharf,

    T4 has a half-life of 7-10 days, so it could take a little while for the hormones to clear your body. By the way, what dosage did you start with? Many people are very sensitive to thyroid meds and have to start with very small doses, like 1/8 grain of NDT or 12.5 mcg of T4 and increase every 8-12 weeks. Some people can't tolerate thyroid meds at all, for various reasons.

    This is the best thyroid book I've read (and I've read them ALL!):
    https://www.amazon.com/Tired-Thyroi...S/ref=tmm_kin_title_0?_encoding=UTF8&qid=&sr=
     
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  15. BRISWHARF

    BRISWHARF

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    Thanks very much for your reply. I started on about 16mg of nature-throid a day split in half each day. To be honest I don't think I would ever try it again..... the worst 7 weeks ever! So now I'm moving onto trying other things that might be the cause of my chronic fatigue
     

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