Coming off suppression dose of thyroxine

Hi everyone. I haven't been here for along time. I am pleased to say I am nearly up to 5 years since my diagnosis for papillary thyroid cancer. I had a TT and neck dissection and RAI and I am doing well.

I have been told they want to reduce my thyroxine medication now. I am currently on 150mcg per day  I am well suppressee on this dosage although my GP keeps saying its too high. I don't know how I feel about a reduction. I feel quite well on 150 but I do have trouble sleeping and do get palpitations occasionally and am a bit anxious. I think I have got used to it.

I was wondering if any of the forum members have come off their suppression dose, and how it has affected them. I am aware staying on a high dose for a long time can affect the heart and bones. Any advice would be really helpful

  • Yes I take 20 of T3. I only found out about it after three years of feeling not right on T4 alone. I read about it in a book called The Thyroid  Solution and I asked if I could try it. It transformed my life. It’s difficult to know how much of how you feel is down to thyroid levels vs menopause changes vs life! I do get anxiety but then the current isolating Covid situation is a trigger for the RAI that I found difficult - even though my life circumstances are totally fine now. 

  • Hi BB,
    The use of supplemental T3 in combination with T4 was not unusual up to about 5 years ago when the price of T3 shot through the roof and lots of GPs had to refuse to support its continued use. if you've been fine all this time on T4, it's highly unlikely you'd need to go for the mix - or that your doctors would support it.

    Please give a lower dose and less suppression a chance to bed in first before looking for alternatives. 

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • If you can function without T3 then all is well. My consultant said he would do everything in his power to ensure I still get it. As I understand it from reading on the net, the supplier put the price up from about 16p to £9.33 per tablet. They can prescribe on a named patient basis but it is far more difficult to get now. Frowning2

  • In the UK, T3 is really the 'approach of last resort' for anybody who just can't get along with T4 alone and it's not going to be routinely available.

    It's also worth being aware - this info from a Pharmacist friend whose mother used to be a member here - BB, you'll remember her mother as we've PM'd about her in the past - that one of the reasons T3 isn't widely prescribed is that it has not been tested fully for long term use by people post thyroidectomy. Most of us, if we've had it at all, will only have had it for preparing for pre-RAI hypo in the days when Thyrogen injections were not available or not within local hospital budgets. Hence, the usage was for short term issues, not lifelong suppression.

    Best wishes

    Barbara

    “Scars are tattoos with better stories.” – Anonymous

  • Hi,

    I've been on a high suppression dose for 6 years suppressed below 0.01 at my worst!  I was taking citalopram to help with the anxiety symptoms. I have been coming off it since July 20, I have also slowly come off the low dose of citalopram. In January I had dose reduced again down to 5x100mcg and 2x75mcg. Recently I've really started to feel a bit off. Just had bloods checked and TSH still in low end of 'normal'. Consultant told me that many people go through a period of feeling rubbish as they get used to the new 'normal'. This makes sense to me, I've got to the point where I dont even know what normal feels like anymore so  yeah I do feel rubbish but got to go with the advice.

    I was prev on 125mcg a day prior to last July, and over my 6 years of suppression have also been on 150mcg a day which really affected my heart etc. 

    I hope that helps a bit.