A Year on Thyroxine

On this day last year, I was discharged from the Endocrinology Clinic at my local hospital with a letter that read:

“We have been following you for approximately four years with a number of symptoms that have been difficult to manage or to attribute a cause to. Previously you have tried Liothyronine to temporary benefit and ongoing iron supplements. Despite this, you continue to feel very unwell.

We have performed extensive investigations for possible hormonal causes of your symptoms without finding an answer. We have reached the limits of our ability to investigate further and still do not have an explanation for your symptoms or treatment to make them better.

At present your thyroid function is normal TSH (0.35-6) 3.19, FT4 (9-26) 14.5, FT3 (2.8-7) 4.5. There is no biochemical indication for further T3 treatment, but I will leave it to your GP’s discretion as to whether he is prepared to try Liothyronine again.”

Instead, I persuaded my GP to try what had never been tried in those four years, a full replacement dose of levothyroxine. I started on 75mcg, upped it to 100mcg after six weeks and then to 125mcg after another three months.

I am now pretty much well. I have lost 20lbs, I have more hair than I know what to do with, I no longer have active psoriasis or IBS, my crippling muscle and joint pain has all but gone and I am living a full and active life and my husband will tell you I am a completely different person!

In fact, after two late nights at the weekend and a day out yesterday, I’ve just dragged him out of bed so we can go and climb a mountain!

Thank you to this forum (and others) for giving me the knowledge and the confidence to fight this to the bitter end. It can be done, you just can’t rely on the NHS to do it for you.

9 Replies

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  • Well done, that's great! I hope someone tells the so-called endocrinology dept!! They might learn a thing or two! Happy mountain climbing x

  • Glad to see that you are now feeling really good - in spite of the endocrinology dept. It sounds like they are blaming you for the fact that they couldn't get you sorted out. Thank heavens your GP was willing to go along with what you had in mind. I hope he has taken note of the results for future reference and doesn't send any more of his patients to the guy you saw. Happy climbing - once you get to the top it will add a whole new meaning to 'feeling on top of the world ' x

  • So wonderful to hear that you are well again.

    I just don't understand why we have to fight so hard for a decent dose of thyroxine. I've upped mine (doc doesn't know yet!) and I feel so much better its a scandal they just do not see it.

    Foreversummer

  • Fantastic News. xxx

  • One thing is for sure a TSH of 3.19 and a free t4 of 14.5 IS NOT NORMAL

    i bet now your TSH is well below 1 and where it should be and your free T4 is more like 20

  • Congratulations to you! How lovely to read a happy ending, especially with Levo!

  • Thanks everyone. As it happens, mountain climbing was a bit of a disaster due to fog and torrential rain.

    My TSH is now suppressed and both FT4 and FT3 in the top 90% of the range.

  • It's criminal the endo thinks everything was done to get you well but left your TSH >3 :o

    Well done for getting your GP to listen and prescribe the dose you needed.

    As for the mountain...it will be waiting for you on a clearer day :)

  • Amazing :-)

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