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Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Delayed radioactive iodine treatment

JC13
Posted by

Hi All

I was diagnosed with papillary thyroid cancer in late February, had a total thyroidectomy with level 6 neck dissection just before lockdown in late March. It has been very strange with no face to face contact with medical staff only one blood test at my surgery to check calcium levels. After one month I had a follow up phone call to discuss my results and further treatment. I was told I will need to have the radioactive iodine treatment but it can be given up to a year after the operation, and due to the effect on my immune system it would not be safe to do it now. I had read on this forum that it should be within 6 months, my surgeon said hopefully we would be looking at around 4 months time.

It is very strange to have this all happening during a pandemic, I have tried to restrict myself from watching too much news about the virus as my anxiety levels rise and I take tablets for high blood pressure. Walking with the dogs helps and going for bike rides. I have to change tablets now from T3 to T4 so am a bit worried about the side effects and getting the levels correct, has anyone experienced problems with changing over tablets?.

thanks for any advice

Jan
Lass
Posted by

Heya

Welcome to the forum, though I'm sorry you need to be here.

I just want to reassure you, that even if there was no lockdown, you'd probably not have had any face to face contact with medical staff yet. Is that reassuring? Lol.

To be honest, RAI can be given at any time at all. There is no time limit in regards to the RAI working or being effective etc. The 6 month timescale is the target for the hospital to make sure they are seeing everyone who needs to be seen and that they are getting treatment in a timely manner. I was diagnosed in 2012 and I've had 4 doses of RAI, 2 in 2013, 1 in 2015, and one in 2017.... if memory serves. Also, there are people who decide not to have RAI, but later down the line might have a recurrence and so then have RAI. So don't worry about timescales, whenever you have it it will still work just as well as it would have done had you had it now.

I'm actually surprised to hear you've been on T3, because NICE have said it isn't to be prescribed without good reason due to costs. So most people start off on T4 immediately. However getting the levels right is no different with T4 than it is with T3, and the side effects are the same in that if you're on the wrong dose you'll maybe feel a bit odd. But the T4 is easier to take as it's once in the morning and you're done, where with T3 it's 2 or 3 times a day, and you need to take them spot on at the right time or you can begin to feel a bit odd.

So all in all, definitely nothing to be anxious about, and all will be fine!

Lass

xx

I have no medical training, everything I post is an opinion or educated guess. It is not medical advice.

JC13
Posted by

Hi Lass

Thank you for your reply, it has made me feel better about the postponement. 
i am now on the T4 tablets so hopefully will get used to them soon.

best wishes

JC

Jan