Radioactive iodine recovery

Hi Rosie

My own cancer was different to yours so I had different treatment. By replying to your post it will hopefully bring it to the attention of someone who has undergone RAI treatment and will be able to offer some more specific advice. Sometimes it can just take a few days for someone who has had your specific treatment/cancer to see it and offer support. 

I do understand how it can feel when you are worrying about whether any cancer has spread and I also remember being ultra aware of any sensations in my body and analysing every little ache and pain. Fatigue can be common with many cancer treatments and I know for me it persisted for some time. 

I know that it is hard to rest and recover after treatment and that you just want things to get back to a bit of normality with work and family. Why not give the Support Line a call and talk things through with one of the nurses. It may help to share your feelings a bit. They are there from 8am-8pm daily. 

I wish you well with your continued recovery and if there is anything else you need while waiting for a response, please do ask. 

Jane

Hi Rosie

I had two of my parathyroid glands and right side of thyroid removed in Dec 2024. Papillary cancer was found. The left side was removed in Jan 2025. This was clear. I had Radioactive Iodine in July this year. Although it was a low dose I still get a bit tired. I take it you are on Thyroxine tablets. Sometimes all of it together takes time to get over. I fully understand you worrying over different aches and pains. It is perfectly normal. I still do it. Some days I feel more tired than others but Apparently when I asked about the tiredness, it can take up to four months to fully go. Also you have also had an operation  which in itself takes time to get over. I was also told this when I said I felt so tired. I also think if you are having a low day, you tend to think more.  I definitely think having a chat with one of the nurses would help. I have rung them and they were very kind and helpful. I wish you all the best. If there is anything else I can help with please just ask.

Sue x

Hi there, 

I had my thyroid cancer operations and RAI in 2023. I found that I felt very mentally foggy and physically tired for quite a long time afterwards.  How long the fatigue lasts seems to vary quite a bit from person to person from what I've read online generally and on this forum over the last few years. Some people seem to bounce back relatively quickly while for others, it takes longer. 

I think I'm right in saying that Macmillan offer some free counselling sessions so maybe that could be something that would be helpful for you? Also, do be gentle with yourself. When I found myself getting frustrated with how slow my recovery was I'd tell myself to treat myself as I would a dear relative or friend who was recovering from cancer and to be kind and patient with myself.

Hi.

I do remember the nurse saying about the free counselling being available. I am having counselling at the moment as although my family and friends are lovely, they don't really understand how I feel. I have to say I didn't realise this forum was here until recently but I have found it to be very helpful.

Sue x

Hey, honestly I think the tiredness will be a life long issue. It might be worth asking about upping your levathyroxin dose half the week. My oncologists were apprehensive to up my dose due to still having high markers of thyroglobulin but have upped me to 150g three days a week and 125g the other four. I've found my fatigue has improved in the weeks since doing this. Also keep active, if you keep moving regularly then your body will be more awake (weirdly works).