Papillary thyroid cancer clinical trials

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Hello,

I have had 5 surgeries and 5 radioactive iodine therapies for papillary thyroid cancer. The RAI appears to not be working, in fact my thyroglobulin was 1.8 before RAI and is now 2.8. I'm wondering if anyone knows of any other therapies.

I have been asked to take thyroxine at 200mg but in the past it made me really unwell. I lost my hair, I was anxious, I was constantly tired and had a whole host of stomach issues. At the moment I take 150/175mg on alternate days but my TSH was 3.31. I'm assuming this is the reason for the jump up in my thyroglobulin levels. I know I should increase increase my dose to suppress my TSH but it makes me so unwell that I don't think it's an option. Again, I was wondering if anyone knows of any other therapies or options to help suppress TSH.

Thank you,

Caz

barbaral over 4 years ago

Hello

You've given us quite a few different questions to answer.

It does sometimes happen after repeated RAI that it starts to lose its effectiveness BUT thyroglobulin levels of 1.8 and 2.8 are absolutely not HIGH. If it wasn't working, you'd expect to see much higher levels than that. And, as you mention yourself, that elevation on Tg COULD well be due to your TSH not being suppressed.

I could try to answer 'what happens if RAI is not working?' but I don't think you need to be asking that yet. Tg of 2.8 is pretty titchy in the grand scheme of things.

I'm 10 years post surgery now and I've not been keeping up with what's normal recently. Ten years ago, it wouldn't have been unusual for a specialist or even a GP to prescribe you a mix of Thyroxine and T3 (Liothyronine) in order to get a suppression level of TSH without making you take such a high level of T4. Then a few years ago the price of T3 shot up and doctors stopped prescribing. Maybe others on here will know where things stand at the moment, but it's worth asking your consultant whether there's any chance you could get a T3 top up to get around your symptoms when you take high T4.

Sorry I'm not up to date on this but I think it's worth asking.

Best wishes

Barbara

“Scars are tattoos with better stories.” – Anonymous

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Papillary thyroid cancer clinical trials