Being taken off Thyroxine, how to manage please

Hello, hope you can advise me please?

I've have a goitre but always good blood results until Thyroxine to reduce the goitre was prescribed a couple of years ago.

I've been hyperthyroid on the Thyroxine and my goitre has not reduced, so I'm being weaned off it and referred to a surgeon.

The endocrinologist said I will most likely become hypothyroid whist waiting for the operation.

Please can you give me any tips on how to cope?

Many Thanks,

3 Replies

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  • Welcome to the forum, Gotrebegone.

    What dose thyroxine are you taking? If you are over medicated it should only be necessary to reduce dose until thyroid levels are within range. Anaesthetists can be reluctant to treat hyperthyroid and hypothyroid patients with unstable levels.

  • Hello Clutter,

    Thank you, I am really confused, my last consultant said there would be doctors who were not keen on using Thyroxine to suppress my thyroid gland and reduce the goitre.

    The last consultant said I've probably had viral thyroiditis. Before the Thyroxine my thyroid gland would be tender and feel like needles wore poking it. I was a little underactive during pregnancies in my twenties - but no treatment, I've always had a fat neck, even when skinny.

    Whenever I have a ultrasound I practically lose my voice and my thyroid hurts for days.

    My TSH is 0.03 (0.35-4.5) and the T4 is 19.8 (11-23) on 125 dose. I started out on 150 dose and was quite hyperthyroid (with symptoms) but can't remember the results.

    My new consultant says it has not worked, my goitre (multi-nodular with mixed solid/cystic components) is not reduced, my voice is still croaky and she said there can be long term side effects (osteoporosis and heart problems).

    I'm to reduce to 100 for this month, then 75 for a month, then 50 until my next blood test in March.

    Not sure what the waiting time will be for surgery, my consultant said it should be a total total thyroidectomy when I asked it I could just have the biggest nodules removed.

    She did explain the hypothyroid symptoms I'm likely to suffer from.

    Please can you give my any tips on how to manage this?

    Many thanks, Goitrebegone x

  • Goitrebegone,

    FT4 is within range so you are not over medicated even though TSH is suppressed. I don't understand why your endocrinologist wants you to become hypothyroid. Goitre will sometimes shrink when sufficient Levothyroxine is taken but Levothyroxine is prescribed to raise low thyroid hormone not shrink goitres.

    The hypothyroid symptoms I suffered when taken off Levothyroxine (I have no thyroid) meant I spent all my time in bed apart from using the bathroom because I was exhausted, cold and in pain. I don't think there is any necessity for you to experience this and I advise you to get a second opinion on your endocrinologist's advice to reduce and stop taking Levothyroxine.

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