Newbie to Thyroid Papillary cancer

Symptoms - I had none at all. If the geiger counter hadn't been clicking, I wouldn't have believed there was anything in the capsule at all.

Coming off meds - this will depend entirely on whether you can get Thyrogen injections. I'm out of touch on what availability is like, but you may want to double check whether you can get it. I thought this was now pretty much standard in the UK but there may be other factors I'm not aware of.

Can I check that you are in the UK?

The medication withdrawal is sometimes done in two stages. You stop T4 - the slow acting standard levothyroxine - and switch to T3 - the fast acting version. I think I was on that for about 4 weeks. Then about 2 weeks before the RAI,  you stop taking T3.

I stopped work as soon as I came off the T3 - I used to do a long commute and I didn't consider I was safe to drive when I wasn't medicated. This was back in 2011 and it was a good excuse to work from home for a while.

Low Iodine Diet - your hospital will tell you. It's hard to guess as even within the UK it varies between hospitals. Outside the UK, the regimes can be quite different depending on the local diet.

Being exhausted after 6 weeks probably means they just haven't given you enough T4 yet. That should go away once you get the dose optimised. But don't rush on that as RAI will mess up your levels before you can focus on getting them right. 

Hi Buttercup54, I have just had my second round of RAI.  The team go through everything with you eg when you need to start your LID diet, what will happen, what you can take in with you to hospital (each hospital seems to have their own rules).  I was given a diet sheet for LID and a leaflet setting out details of what to expect and this was after a lengthy telephone call where they go through things with you and ask questions.  They told me a lot more than my Oncologist could but yours could be different.  I had Thyrogen injections (2 of them on 2 days prior to admittance for RAI pill).  So my LID diet started 2 weeks before the date of RAI, then the Thyrogen was on the 2 days prior to the RAI.  I have been fine on both my treatments mostly, just some minor symptoms, the first my neck swelled a little in the Thyroid area but didn't hurt and soon went down, I had a bit of an upset tummy for a couple of day after I got home and  bit of a headache but nothing bad.  I was given anti sickness pills and I did take a couple but didn't need any more.  The second time which was a month ago, I felt as if my salivary glands were swelling the first night, but I sucked on lemon slices and drank lots of water and massaged and it had gone by morning.  I have been a bit headachey but am prone to headaches, but again nothing bad, and the second dose was a higher dose than the first.  As far as tiredness is concerned, RAI can make you feel tired too, I have found I have been going to bed a bit earlier than I did.  However you are also only 6 weeks from surgery and as Levothyroxine can take 6 weeks to get into your system, then you can feel more tired than normal.  If you are worried at all, then do speak with your Oncologist as it might be that your dosage needs tweaking.  Best wishes and I hope all goes well for you x