Radioactive Iodine Treatment

[SnoopyJ]

Looking at the possibility of radioactive iodine for thyroid cancer as I’m not a good candidate for surgery. Has anyone on this forum had this treatment, and if so could you let me know the pros and cons. Many thanks.

[bantam12]

I had RAI for Graves’ disease many years ago, easy treatment and no side effects, did the job of killing off my remaining thyroid for good.

[SnoopyJ in reply to bantam12]

Good to hear of positive results….thanks for responding.

[pennyannie]

I deeply regret having had RAI thyroid ablation in 2005 for Graves disease :

Your situation is not mine - please do you research -

ncbi.nlm.nih.gov/pubmed/306...

RAI is known to be taken up, to a lesser extent by other glands and organs in your body and there is a known risk of risk of cancer to small bowel and breast.

elaine-moore.com - though a website for Graves Disease - Elaine went through RAI and writes on this slow burn toxic treatment within her website :

[SnoopyJ in reply to pennyannie]

Thanks for the response will definitely read all the info on these sites.

[Cake-Maker in reply to SnoopyJ]

I have had RAI for treatment of Thyroid Cancer. I agree with the views of pennyannie

Question your endo closely and do your research. Remember too that the dose is higher for treatment of thyroid cancer. I was in isolation for 4 days.

[SnoopyJ in reply to Cake-Maker]

Did you have severe issues with saliva as she did?

[Cake-Maker in reply to SnoopyJ]

No. My issues were longer term. Saliva issues aren’t always a problem.

[pennyannie in reply to SnoopyJ]

She is me - and what concerns me is that when I presented with these saliva issues there was no help, nor understanding, and I was referred to as a conundrum :

You can't imagine the constant pain of having no saliva- its like your mouth is full of cracked cement - it hurts - I read somewhere that saliva contains a pain killer around 6 times more powerful than morphine and I wouldn't wish this on anybody.

The NHS were in total denial of my health issues - my mucus membrane was damaged throughout my body - with this toxic substance damaging my whole digestive tract from body entry and exit.

I'm sure I'm in a minority of people who have experienced such extreme debilitating symptoms but just be aware and I still tolerate symptoms.

I was then refused any other treatment but T4 - Levothyroxine - told I was over medicated and needed my T4 reduced as my TSH was low suppressed.

I explained I had Graves and the TSH is not a reliable measure of anything post thyroid ablation and that my T3 was only 25% through the range and a dose reduction in T4 would compromise my health further and asked could I be trialled on a different thyroid hormone replacement option.

I was refused both T3 and NDT on the NHS - so started self medicating and have stayed away from the NHS for these past 6 years and am much improved looking after myself.

I now have saliva, but my taste buds haven't recovered - and dental work needed, caused by having no saliva, has been extensive and very expensive.

This is a toxic substance and the full impact and consequences are only just being released into the public domain.

We are all different - and dependant on your diagnosis it may be the right decision for you -

Please do your research :

[Mugs19]

I had Radio Iodine Treatment and it was the worst thing I’ve done. If I could undo it I would. I was told it was risky to stay on carbimazole full time. Since then I have met several people who have done that and been very well on it for periods like 15 and 20 years.