Discussions that mention thyroxine

Rare Disorders board

Hi Everyone

I was diagnosed with aggressive invasive follicular hurthle cell carcinoma on the 10th May. This site has provided me with invaluable information as well as making me realize that I am not the only one in world with this kind of cancer. Very few people in the UK seem to have heard of it and even my GP had to ‘google’ it when I got the results from the initial FNA stating that hurthle cells were present. That’s why I want to write my experiences so far and in the future to give information to others in my position.

I had a tight feeling in my throat for a few months which I thought was due to stress initially. I then realized that it was probably something more but wanted to have my holiday in Florida! ! before going to the doctors and starting, as I thought, treatment for a goiter or thyroid nodule….. I was having trouble breathing, especially when speaking and swallowing. Anyway I had an FNA at the hospital where I work and the results came back as a degenerative hurthle cell tumour on 3rd March. My surgeon decided to do a TT on the 1st April and I got the results of the histopathology on the 10th May. I was referred to an oncologist immediately and he has arranged a treatment plan of radioactive iodine and 6 weeks radiotherapy. I am having the radioactive iodine treatment on the 16th June and have been on a non-iodine diet for 2 weeks. My surgeon had put me on thyroxine 100mg after my op as he was 99% sure the tumour would be benign…. So now I am on no medication in order to bring my levels to zero for the treatment. I am reasonably OK about the radioactive iodine treatment, I have been told I will have to be in isolation for 5-7 days which I think I will bearable! But I am a little unsure about 6 weeks of radiotherapy…. Has anyone out there survived with a smile….

I am going to make an effort to post my experiences of the treatment and my progress afterwards in order to help others who visit this site since it helped me so much at the beginning.
Thanks to all of you who have taken the time to post your experiences.