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The Challenges and Complexities of Thyroid Hormone Replacement (2010) Kansagra et al.

Discussion in 'Health News and Research unrelated to ME/CFS' started by Barry, May 13, 2018.

  1. adambeyoncelowe

    adambeyoncelowe Senior Member (Voting Rights)

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    Do you know if there's any reputable info on LDN and autoimmune thyroiditis? Thyroid problems run in my family, and my TSH dropped from 3.5 to 1.8 after a year on LDN. It might have been diet or even supplements, though, so I'm just curious if there's any evidence for this.

    My partner's uncle also had very ME-like symptoms from a 'torn' (his description) thyroid gland, including sore throat, fatigue, joint pain, etc. I'm also curious how much thyroid problems are 'downstream' of ME, or if they just produce similar hypometabolic states that makes them easily mistaken for each other.
     
  2. Barry

    Barry Senior Member (Voting Rights)

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    Just an update on this in case it helps others. My wife was on 75µg per day, and as she had quite a few tablets in hand we decided to see how she went with 100µg. The improvement has been significant, though unsurprisingly not the dreamt-for hope that her ME had been wrongly diagnosed in the first place. My wife has definitely had more energy, albeit still nowhere near normal, but significantly better. Can walk a lot further; twice as far on one occasion. I've noticed she is also more switched-on, and I think feels better in herself.

    Free T4 now a bit on the high side at just under 26, and TSH below the limit (virtually bottomed out) at 0.02. But she feels significantly better. When she went to the doctor recently (1st time she has seen this one), and after carefully quizzing my wife about the difference the higher dose made, the doctor agreed to keep her on this dose but monitor it. I've read somewhere that for people with hypothyroidism, being close to or just over the free T4 limit can be optimal.

    Also the fact that her TSH is very low presumably means there is no demand for more T4, so that aspect seems right.

    We had a feeling my wife's prevailing symptoms might not have been entirely the ME, and instead maybe a combination of ME and incorrect thyroxine levels. If she had just gone to the doctor and asked to try a higher dose she would likely as not been declined, and the conclusion being it was all the ME; her free T4 was previously well toward the higher end of normal range.

    Which just goes to show how important it is for people with hypothyroidism and ME, to not necessarily assume ME is still the sole problem. Thyroid medication needs may change over time but ME can mask that if not careful.

    Edit: Corrected TSH value, should be 0.02.
     
    Last edited: Aug 23, 2018
  3. Inara

    Inara Senior Member (Voting Rights)

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    @Barry, before taking T3 my ft4 levels were in the upper range and TSH ~ 0.01 (suppressed), while ft3 remained in the lower range. This changed when I added T3. Now my TSH is somewhere at 1.0 or so, which is perfect I think.

    Edit: By the way, my body temperature with T4 remained low, somewhere at 36°, now it is 37°.
     
  4. Barry

    Barry Senior Member (Voting Rights)

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    Did taking T3 make any significant difference for you?

    Also, with your TSH increased after taking T3, did your free T4 drop a bit?
     
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  5. Inara

    Inara Senior Member (Voting Rights)

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    Not regarding energy or ME symptoms. Still, a normal body temperature has its plusses, and not gaining weight endlessly instead of proper food intake isn't so cool either, honestly.

    By the way, I hope it doesn't sound like T3 is the Holy Grail. If there is no problem with the conversion to ft3 (and no deficiency that could explain it), I don't see why T3 should be taken.
     
  6. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Interesting about your body temp normalizing @Inara.

    I am at my best thyroid-wise with a below normal TSH and T4 at the very top of the range as long as T3 stays mid range.

    I don't believe I have any problems converting T4/T3 and taking T3 isn't right for me, though I know others need it.

    My body temp still stays down between 36.2-36.5 degrees. Even if I feel feverish.
     
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