Post Thyroid and neck cancer

Hi, I was diagnosed with thyroid cancer that had spread to lymph nodes in my neck in 2021. Following surgery and 2 courses of radioiodine treatment I have been given the all clear.  However, I am really struggling with extreme tiredness on the thyroxine, very achey painful joints and pain in my shoulders and neck - I still have numbness in my neck which I’ve been told is nerve damage from the surgery and may never get better. I am constantly told that thyroid cancer is the ‘best’ cancer to have as it is easily treatable and has a very good success rate following surgery - because of this I feel like I’m making a fuss, compared to what so many are going through - I should get over it and move on - I barely had cancer.  I’ve seen my consultant and GP and neither have been particularly helpful with regards to how I’m feeling- I’ve even been told the achy painful joints are just due to getting older - I’m a 60 yr old woman - so virtually invisible (lol) 

  • No-one on the planet should use the "best cancer" trope. It is demeaning and diminishing and isn't true. (Aside from anything else, there are several different thyroid cancers with statistically very different outcomes.) And no cancer is good.

    In another part of the universe, I take levothyroxine and am so very, very aware that many - likely most - of us are on inappropriate doses. Too high or too low. And even just changing from one make to another can make a significant difference. Thyroid blood tests indicate but each and every one of us is an individual and we MUST NOT be treated as the numbers that come out of a blood test. Especially when that is TSH-only.

    I urge you to seek out a good forum, join, read for a while to get some idea of what is being discussed, and post your own question(s). (I think making any suggestions here would be inappropriate.) Some forums have a lot of post-thyroid cancer members who have had a wide range of experiences. And, on a positive note, many do very well. Often better than this with other causes of hypothyroidism.

  • Thank you so much for replying and your suggestions. I have queried dosage and whether I can take an alternate medication but was told very strongly by the doctor that levothyroxine is the one we use in the UK - I will definitely look into a specific forum. 

  • Desiccated thyroid is almost never prescribed in the UK. But a number do get some liothyronine (T3). 

    However, for most of us, getting to a more appropriate dose of levothyroxine is a good start. As well as considering iron, B12, folate, etc.