First ever endo appointment

Referred by my Gp I saw an endo for the first time at the RIE, Edinburgh. I could not have wished for a better experience, she listened, she outlined what she could offer, no NDT but T3, to find a way to treat me so that I feel better than I have done in the last twenty years. Was on 100mcg Levothyroxine and she suggested 25 mcg T4 and 20 mcg T3. Will see her again in 2 1/2 mths and wonder if this dose seems ok or is too low. Anyone with experience of switching from T4 to T4/T3 has any suggestions?  Was I just lucky to have come across her? I found her very helpful and supportive and so relieved that at least there is something else that I have the chance to try and maybe improve my hypothyroid state.

7 Replies

  • I too had my first appointment with an endocrinologist today and like you was thrilled with how it all went. She took 12 vials of blood for absolutely everything and will prescribe based on results on Friday. 

  • Sounds like you got lucky elkewilliams :)

  • The treatment should be based on your results.  That sounds a BIG drop of T4 and possibly too much T3 to begin with.  T3 is 3 times stronger than T4 - roughly - so you are taking less than before.  A small reduction in the T4 whilst introducing T3 low and slow sounds a better idea to me.  Others will comment.  I am T3 only and reduced a small amount of T4 slowly as I introduced small amounts of T3 ....

    Did your Endo give any advice how to take the additional T3 ?

  • Well, she just mentioned that we/I had to start somewhere and admitted is was a shot into the dark. I think she was worrying about giving me too much T3 to start with. I had a feeling the T4 25mcg, was too low. Your idea sounds better to me, thanks. She suggested to take it twice a day, that was all.

  • Well you were just lucky - but Edinburgh - where she probably trained - is one of the finest Medical training establishments in the world - so she got up to date and relevant pleased for you.

  • I was on 125 of levo and dropped to 75 levo and started 20 of t3, under the guidance of endocrinologist. I waited 6 weeks but felt increasingly awful. Thanks to the advice if these guys I realised that my levo had dropped too low so I put it up to 100 and I already feel loads better, just a week later (I had contacted the endocrinologist for further advice but still not heard anything).

    However I have noticed from my desperate post on this when I felt bad, that we all seem to be very different, and what works for one might not work for everyone.

    For me, i'd go with the endocrinologist, especially as she is listening to you and that would mean her prescribing is based on some rationale.

    Good luck!

  • Well done finding an endo that understands endocrinology. How can you judge what might be a suitable dose of thyroid hormone? As a rough guide, for those who do well on T4 alone, many people find that a dose of T4 150 mcgs is optimum.

    T3 has roughly three times the power of T4. Some may quibble, with a point of view that it is 4 times or even 5 times.

    I found my optimum dose is T4 100 mcgs plus T3 20 mcgs, taken as a morning dose. Sometimes I take an extra 10 mcgs of T3 in the afternoon, rarely an extra 20 mcgs of T3 in the afternoon.

    I am not suggesting that this is the optimum dose for you.

    When I as on T4 only, I found that my winter dosage of T4 was three times my summer dose. Worth considering, for anyone on thyroid hormone replacement who starts to feel unaccountably fatigued during the onset of winter.

    Further, I found that after 12 years on thyroid hormone replacement, on doses outlined above, symptoms of hypothyroidism recurred which did not remit, no matter how much thyroid hormone I took, no matter in what combination of T4 and T3.

    I did an adrenal test (Adrenal stress index, saliva test). Result? Evidence of quite severe adrenal insufficiency.

    Worth thinking about your adrenal status if thyroid hormone replacement ever seems to be letting you down.

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