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Trying t3 only thyroid treatment...who's been there?

Discussion in 'Hormones' started by CW1, Sep 1, 2016.

  1. CW1

    CW1

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    My Free T3 levels are pretty low right now, even slightly lower than the traditional endocrinologist range.

    So I'm working with an integrated doctor and we are trying a compounded t3 only medication - starting very low at only 10mcg

    This doctor also claims that I must take adrenal cortex supplement along with it.

    I'm ok with trying this I gues... I just get weirded out though bc there are so many different opinions about whether or not to supplement hormones with CFS.

    Also, even though I'm exhausted, I'm really wired too. I'm barely sleeping. It just feels odd to be adding forms of t3 and hydrocortisone when I'm sort of always in fight or flight mode. I need to relax more than I need energy right now

    Thoughts? Have you had success with any similar protocols?
     
  2. ahmo

    ahmo Senior Member

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    After decades using synthrooid, and 2 years experimenting w/ different combinations of Armour, T3, T4, I've now been on T3 only for 4 years. Best thing ever for me. I also used adrenal glandulars, along w/ hypothalamus and pituitary, for a couple years, but not because I was on T3. After correcting methylation + detox, I was able to discontinue the glandulars.

    For some time I was only able to tolerate very low levels of T3. Once my adrenals were stronger/healthier/less burdened, I was able to raise T3 levels. The adrenal + hypothalamus really helped my fight/flight horror. As did, eventually, B12. It turned out that getting up my B12 levels, w/ Freddd's Protocol, reversed my neurological issues and stopped my terrible insomnia.
     
  3. CW1

    CW1

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    Ahmo,

    Thank you so much for that detailed response! Glad to know the t3 and glandulars helped.
     
  4. mermaid

    mermaid Senior Member

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    Yes I am also on T3 only, but was diagnosed with hypothyroidism some 10 years or so before ME/CFS really kicked in. I was on T4 only for 17 years in all, and tried T3/T4 combo for a short time, but was not well on that. An endo agreed to me trying T3 only and have been on it for 4 years now (I had low FT3 after testing before going onto it).

    It hasn't been THE answer by any means, but seems to be part of the puzzle. My adrenals do seem to struggle at times, and I have heard that T3 only is harder on them, but mostly I manage it better now since I upped my carbs a bit and eat more frequently. I do not take glandulars as I could not tolerate them (stomach pain) but I do go to a medical herbalist who has me on liquorice amongst other things that help support. I have low BP so it's not a problem for me with that.

    However I am in the UK where I am able to get my T3 for free at present, but due to massive price rises here on T3 (due to manufacturers renaming a previously cheap drug and charging excessive prices to increase profits), I worry that I may end up needing to buy it on the net eventually if the NHS refuse to supply it to me, as some places have already.
     
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  5. CW1

    CW1

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    Mermaid,

    Thanks for your detailed response as well! Yeah, at this point I'm not expecting any treatment to be THE answer... Just looking for something that will nudge me in the right direction, and right now my t3 is pretty low so we will see...

    That is horrible about the medication price change! I hope you stay covered by the NHS.
     
  6. CW1

    CW1

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    @mermaid and @ahmo,

    I took my first time released t3 this morning. (10mg liothyronine). I'm feeling a touch of uncomfortable jitteriness - it's not horrible but noticeable. Can the t3 actually be working this fast, or am I maybe just having slight anxiety?

    Did either of you have any transient side effects that went away? I imagine if my body hasn't had t3 for a while, and then gets some, that it might have an initial reaction...

    Clearly I am way overthinking this :) I've just been through a couple of wrong roads treatment wise so I'm a bit gun shy
     
  7. mermaid

    mermaid Senior Member

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    @CW1 Yes, T3 does work quickly so you could have those feelings. Mind you I don't use the time released sort and I would have thought that would be smoother.

    When I was using T3 I bought Paul Robinson's book on it which was very useful as there was very little information to be had otherwise. As a result of that I cut my T4 entirely, and then introduced the T3 very very gradually over several weeks. 10mcg is a very modest amount, but then I am hypothroid and was using 100mcg T4 so maybe I would not notice that amount so much.

    What I did get was some fast heartbeat sometimes, but that was an indication I had taken too much. Paul R recommends taking Heart Rate, Blood Pressure and temperature while you are introducing it, at frequent times in the day, and you can then see if your body is over reacting and cut back if needed.

    This is Paul R's website http://recoveringwitht3.com/
     
    Last edited: Sep 2, 2016
  8. ahmo

    ahmo Senior Member

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    I'd imagine you could feel it very quickly. I've been hypothyroid since adolescence, always taken some sort of replacement. So I only noticed feeling better than I had on other types. For a time I went to very high doses, and then did have hyper symptoms.
     
  9. lnester7

    lnester7 Seven

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    I have high t3 free, so I am gonna try only t3 now. I have been in t3 and t4 for years.
     
  10. CW1

    CW1

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    Thank you guys the input! And I'm definitely going to look into that book
     
  11. jlynx

    jlynx Senior Member

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    I take 30 mcg compounded T3. No difference in symptoms, hair thinning never stopped.
     
  12. CW1

    CW1

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    Sorry @jlynx that you haven't had better luck. Did you try going up on the dose?

    So far the t3 is working out ok for me. gives me a little boost.

    I can't handle the adrenal cortex though. Tried twice now - it makes me wired then later I crash and become weak and nauseous. But you would think my adrenals wouldn't be too stressed over 10mcg of t3?? I guess I'm hoping I can stay on the t3 without having to do the adrenal cortex.
     
  13. CW1

    CW1

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    It's me again - sorry I know this is probably boring for those of you who are way beyond it or have tried t3 only and it didn't work...no need to respond. Just following up for people who may want to search t3 reactions to see what's happened to others.

    I have been all over the place w my reaction to it. First it gave me a slight boost, then it sorta made me feel more hypo than before I started it. Now my sleep is worse than before I started - and it was pretty bad before. I'm sleeping 3-4 hours a night. It's only 10 mcg but the fact that it's Extended release could be the issue w the insomnia. Emailed my doc to see if I could try the regular non extended release
     
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  14. Rlman

    Rlman Senior Member

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    @CW1 once you start taking thyroid hormone, your own feedback system turns off, so you probably need to raise the dose. the website and facebook forums of 'stop the thyroid madness' are full of info. you can ask your questions on their forums as well. also the wilson's syndrome website explains how to dose slow-release t3.

    btw, my thyroid tests are nomral, but since i'm so cold i tried natural desicated thyroid 15mcg which has like 6.5 mcg t3. got rapid heart beat and jittery. so gonna try taking it again with hydrocortisone which is for adrenals bc if adrenals weak thyroid can't enter cells. do you have hashimotos's disease (thyroid antibodies?) if so the book root cause of hashimotos disease by isabella wentz may be helpful.
     
  15. CW1

    CW1

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    Great info @Rlman thanks!

    Ive put a call in to the integrative doctor I'm seeing. He hasn't gotten back to me yet, but I'm guessing he will agree with you and say that either my adrenals aren't supported enough or that I need to up the dose.

    I don't have any autoimmune antibodies - no hashi. Just low ft3 (2.0) and high reverse t3 (28)

    It's just hard bc not all doctors even agree that reverse t3 blocks receptors - or that it can be treated - and not all doctors agree that t3 only treatment is a good idea...Makes it hard not to question the treatment entirely when I'm having a weird reaction - especially bad insomnia. .. But I'll wait to see what doc says. Thanks so much for your input! Hope ndt is working out for you with the hc
     
  16. Rlman

    Rlman Senior Member

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    @CW1 glad to be of help. On the forums i've seen ppl clear rt3 with t3 therapy. the sttm page has lots of info + their fb groups. also wilson therapy for t3 not supposed to be permanent, just for some time. btw, many things can affect creation of ft3. i thnk it is made by liver from ft4 so if liver has toxins that can affect production of ft3. maybe heavy metals too, inflammation etc stuff like that. it's good that you don't have hashis i guess at least. i think the sttm page suggests causes of high rt3, don't remember them all. yes the tiredthyroid site is against t3 only but paul robinson seems to be doing ok on it. anyways yes lots of reading and research to be done lol. all the best!
     
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  17. Rlman

    Rlman Senior Member

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    @CW1 and btw many docs don't understand thyroid dosing. that's why researching for self may need to be done if they can't help but hopefully they will.
     
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  18. jlynx

    jlynx Senior Member

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    I started lower, but I'm going to ask my doc about increasing. I've read about people doing well on 100 MCG or even higher on compounded T3. I'm also going to ask about trying low dose Cortef.

    Hope you find the right treatment soon!
     
    CW1 likes this.
  19. Rlman

    Rlman Senior Member

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    @CW1 maybe the issue is your adrenals are exhausted, which is why you were only able to tolerate the t3 for a bit. here is an excerpt from the Dr. Rind site: "Note that if the adrenals are too weak to handle the desiccated thyroid (Rx) then we often see an initial response of better energy and fewer symptoms followed by a later ‘crash’ in which energy can drop to even lower levels than before the desiccated thyroid support. Additionally, other symptoms of adrenal stress such as anxiety, insomnia, and palpitations (racing heart) can then occur. The same can be seen with fast release T3 (e.g. Cytomel) or with slow release T3."
    taken from: http://www.drrind.com/therapies/metabolic-therapy

    or the issue can be what i wrote in previous posts.
     
  20. lnester7

    lnester7 Seven

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    Well about went bold so went back on The sybthroid
     

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