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Thyroid hormons T4/T3, someone else taking it for CFS/ME?

Discussion in 'General Treatment' started by pattismith, Jan 17, 2018.

  1. pattismith

    pattismith Senior Member

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    @JeanneD , Would you please add the unit type and the normal ranges according to the laboratory that performed the test ?
     
  2. pattismith

    pattismith Senior Member

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    Update on my T3 T4 trial

    I stopped totally T4 because it clearly doesn't help me, and 24h00 after the intake, I suffer from headache and nausea.
    Each three times when I Took T3 alone, I improved dramatically for 9 Hours.
    Today I had an amazing day, I felt almost normal ! No more muscle pains, no head pressure, no brain fog.

    I was able to speak on the phone , to work all the morning, and then drive the car several hours.
    It Was really exiting and I began to think to all the things I failed in my life that I may start Again!

    Then as I was driving, it was 4h30 PM and I started to feel my arms and legs heavier and heavier again, the pain in my muscles again, and it reminded me that the doll was still broken ...Someone had press the off button again!
     
  3. Wishful

    Wishful Senior Member

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    To MAF14: higher doses of T4 did make me feel that something was wrong, like my heart was beating too fast, so I think I was responding to excess T4 (or T3) in that regard. It did nothing for my ME symptoms. My symptoms increase if I consume goitergens, which logically would decrease all of the T-hormones. Also, when I first started taking T2, I tried taking it daily and found that it stopped helping after the first few days. When I stopped taking it, my symptoms worsened as kind of the reverse curve: abruptly worse, then gradually improving to the previous 'normal'. I took that to be the expected delayed thyroid response to artificial boosting of T2.

    What I wonder about is whether my cerebral T2 levels are lower than normal, or if whatever process it is involved with requires higher levels than normal. Maybe something is blocking its function; I don't know. I believe that a boost in T2 causes increased production of proteins or whatever, which affect cellular functions involved with ME, and which have a 21 day lifespan.
     
  4. MAF14

    MAF14 Senior Member

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    This good day was on T3? If so then maybe try adding in more T3 say around 2-3pm? Or a slow release T3 (I've often heard these are hit or miss though)?
     
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  5. MAF14

    MAF14 Senior Member

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    Hmm I'm really not knowledgeable when it comes to T2 or T1 so I cant comment... What about moderate doses of T4? I would imagine even if you didn't "feel" better having thyroid levels in range would be good regardless.
     
  6. pattismith

    pattismith Senior Member

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    I tryed it yesterday, with a T3 dose in the morning and a second dose at 2 PM. I was tired at the end of the day but not painful/heavy. This morning I woke up with the headache/nausea, but still no pain/heavyness.

    Pain and heavyness and dysability went back at 12 AM, so I prepared a new T3 dose to take, and put it on the side on my plate. Then I forgot to take it and went to bed to sleep 1h30. When I woke up, I was figuring my disability would have disappear, but it hadn't.... Only then I realized I had forgotten to take the T3...

    it's nice to see that it is really not a Placebo effect!

    So I took it, and I went from the living-dead state to the functionnal state within an hour...

    I am still amazed by that, especially that I had already done T4 and a T3 trials some years ago without any success...

    The situation has really changed for me over the years, probably because of the antibiotic courses I had this year for chronic intracellular infection.
    I suppose that my cells are now better at using T3 than they were before, even though they need more of it than normal cells...
     
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  7. MAF14

    MAF14 Senior Member

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    I'm glad to hear you're having some success!

    Over the past few days I've been upping my iron and doubled my T3 dose (50mcg to 100mcg). I might suggest trying to up your dose as well. That being said taper up slowly. I'd hate to be the cause of bad side effects for you!
     
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  8. pattismith

    pattismith Senior Member

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    thank you MAF, I am very cautious and prone to side effects, so no need to say!

    Each time I take a T3 dose, it's only 6.25 mcg, so it is really small. I tryed smaller but it wasn't efficient.
    Be careful with your iron supplementation!
     
  9. MAF14

    MAF14 Senior Member

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    Ha, Im the polar opposite. Never had a side effect from thyroid/cortisol meds in my life.

    Back to dosing... 6.25mcg is VERY little T3. It's no wonder it wares off on you so quickly
     
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  10. Wishful

    Wishful Senior Member

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    Moderate dose of T4 (or dessicated thyroid) just had no noticeable effect, other than slightly lowering my tsh. I didn't notice a significant worsening due to artificially depressed T2 (from lowered thyroid function), but that's more of a concern to me than my tsh. My other thyroid hormones were in the normal range, with or without supplemental T4, so there didn't seem anything to 'correct' there.

    Doctors like to 'correct' tsh because it's easy and its what they are taught to do, not because the precise level of tsh itself is important for your body. It's the T3, and maybe T2, in the proper isomer form, that are actually important.
     
  11. pattismith

    pattismith Senior Member

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    probably right! But normal thyroid test doesn't mean you don't have a problem with thyroid hormons, my tests are in the normal ranges, but I react dramatically and positively to T3...
     
  12. Wishful

    Wishful Senior Member

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    I could have some problem with my thyroid system, but if I do, it's probably beyond the ability of today's endocrinologists. They look for simple solutions, rather than taking other medical problems (such as chronic inflammation increasing tsh) into account. The 'well respected' endocrinologist I went to simply got angry when I pointed out that I didn't seem to match the symptoms and responses for standard Hashimoto's, and that neuroinflammation should increase tsh. My tsh hasn't gotten noticeably worse over the last 15 years, so I'm not worried about my thyroid gland falling apart soon. I did have a thyroid test when my disorder first showed up (it wasn't full-blown ME at that time), and my thyroid function was 'normal' at the time, so I still believe that the elevated tsh is an effect of the ME.
     
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  13. pattismith

    pattismith Senior Member

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    I couldn't say, my TSH always was in the normal/low range...

    What is obvious is that endocrinologists ignore peripheral thyroid hormon resistance because there is few to no marker for it.

    (thyroid hormon resistance occurs when your lab tests are fine but you still have symptoms of lack of thyroid hormons)

    The one you can test is reverseT3 when you will do your next thyroid panel (I'm waiting for my rT3 result).

    But thyroid hormon resistance can come from lot's of cellular disorders that you can't investigate:

    -impaired/inhibition of thyroid hormon transporters
    -impaired/inhibition of nuclear/mitochondrial receptors for thyroid hormons
    -impaired/inhibition or over activation of deiodinases in peripheral tissues

    This is the reason why older docs who were treating hypothyroidism according to clinical criterion may have been right over young endocrinologists that follow the consensus and treat only with T3/T4/TSH markers...

    This is why some modern doc still go against the T3/T4/TSH markers consensus and treat with rT3 and clinical outcomes...
     
  14. JeanneD

    JeanneD Senior Member

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    Of course, silly me! What good are values without lab ranges? :rolleyes:

    TSH w/reflex to FT4: 3.15 range: 0.4 - 4.5 mIU/ml
    T3 free: 4.0 range: 2.3 - 4.2 pg/ml
    T3 total: 125 range: 76 - 181 ng/dL
    T3 reverse: 16 range: 8 - 25 ng/dL
     
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  15. sb4

    sb4 Senior Member

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    United Kingdom
    I know the only way is to test but would it be reasonable to assume my rT3 is high with these results:
    TSH very low, T4 high, T3 normal.

    I asked the Dr about reverse T3 but she wasn't having it.

    Also, could it cause more problems to increase T3 as it increases mitochondrial function, and if your mitochondria are pumping out ROS or if you are vitamin deficient you could exacerbate these conditions?
     
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  16. pattismith

    pattismith Senior Member

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    yes of course! This may be the reason why I didn't respond when I did previous trials with T3...

    As often in ME/CFS, if you don't have the complete cocktail, you fail to improve, or you improve a few days and crash harder...

    With your test results, I would insist to have the reverse T3 done...

    https://www.bloodtestsdirect.co.uk/index.php?route=product/product&product_id=268

    http://www.biolab.co.uk/index.php/cmsid__biolab_test/Reverse_T3
     
    Last edited: Jan 23, 2018
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  17. pattismith

    pattismith Senior Member

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    it looks fine, are you supplemented? with T4 only?
     
  18. MAF14

    MAF14 Senior Member

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    All in all I agree and wouldny supplement any thyroid meds if everything other than TSH was in range - unless you had RT3 issues.
     
  19. MAF14

    MAF14 Senior Member

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    What would be tested here? Any more information? I've been trying to look into what would be causing the issues for me but couldn't find clear info on testing for cytokines, inflammation (aside from CRP) etc.
     
  20. Wishful

    Wishful Senior Member

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    I would like to point out that my endocrinologist admitted that my full set of thyroid measurements were 'unusual' (some of the measurements, maybe free T4 and T3, were a bit high/low in one test, and reversed in the second one, which he obviously felt was odd enough to be worth mentioning), but then he just brushed that off and said it was Hashimoto's Thyroiditis, take synthroid, end of discussion. That's when I pointed out the other stuff and he got angry. How dare I challenge his amazing diagnosis that must have taken him several seconds to reach? Nope, not impressed with endocrinologists.
     
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