How did Radioactive Iodine (RAI) therapy make you feel? Experiences?

The only scores I have seen are from the biopsy; the 3,6 tumor on left lobe was a TI RADS3, Bethesda category 111, the 4. tumor on the right was a TI RADS4, Bethesda category V1-papillary cancer. The removed thyroid showed many more tumors, which the toxicology report outlined. All were classified as a 4 or below, with only the known cancerous one (4.) being a 7. No lymph nodes were identified. I'll find out much more accurately when I speak to the surgeon shortly. I already have instructed his staff to send the completed tox report to my oncologist and, hopefully she will reach out to me. I have used the patient portal with both my local and the surgeon's medical facilities-its great for getting test results and keeping track of appointments but a big a pain for the numerous, duplicate, and unnecessary e mail notifications. I have also done zoom conferencing for previous treatments, so I am fairly set with that technology. I am 79. Until 5 years ago I have been extremely healthy and robust with a productive high energy level. Then serious prostate, lumbar and chronic pain issues really clouded my life and required major surgeries. I had highly qualified experts which resulted in a superior physical recovery and results in general (as far as medical quantifiability is concerned)-but it left its mark. I became physically lethargic with no energy, a mental malaise set in and depression followed. I gained weight around my middle even though I ate less (I have been skinny all my life and somewhat athletic, Its just awful!). I laid around for months, accomplishing only the bare minimum which just exacerbated the mindset. I had lost the joy of living. Then my pain team tried a new approach and the improvement was wonderful and dramatic- lessening the pain intensity and giving me a new out look on life-another words "I felt I was back in the game"! Then, as an ancillary discovery from an MRI for a different issue I found out I had thyroid cancer, and here we are! I do have questions, many sparked by what I have read here. The main one right now is; why have they recommended RAI before any other modality (radical-laced with side effects and possible gland damage) instead of first trying thyroid suppression and monitoring with blood tests, ultra sound, etc? What is wrong with "watching and waiting, when its worked so well for others with a similar diagnosis? I was placed on 125 mcg of levothyroxine since surgery and that has not been checked for my individual need even though I have met with the endocrinologist himself (not a staff peon)!. I sense he does not have the experience I need and will question him about this! Now after getting thyroid cancer and being forced to learn about it, I wonder how much of what I described was really caused by the thyroid cancer and not all of the surgeries Well, that's a synopsis of what is going on. Hopefully I answered some questions. I'm sure I've missed some and haven't the answers for others. Any further incite is appreciated.

Rockon79,

When was your surgery? Synthroid (and it's generic) levels are usually leveled out in your body 6 - 8 weeks after any change was made to them. So, if you just started on .125, expect to have your medication tested in 4 weeks at the earliest and 6-8 weeks after for more certainty. I remember that once my medicine was off (after 25 years I can just feel when it is off now) and of course I wanted a quick fix. Sadly it took many months of adjusting to right the right dose again. I guess my point is that patience (which I do not have!) if essential with thyroid cancer maintenance because so much of it is waiting.
I was first diagnosed at 26. It came back in more lymph nodes at 27 and again at 28. I am now 53 and there are still nodules in my neck that we "watch and wait".
Hope that helps.

After a complete thyroidectomy for PTC in 2021, I was referred to a radiation oncologist for a recommendation as to whether RAI was indicated. My risk factors were my age (70 at the time of my surgery), the fact that my nodule had slightly breached the capsule, and the size of the nodule that had been removed. On the positive side, the pathology report after my surgery said that the margins had been clean and there had been no apparent lymph node involvement. We discussed this and decided together that watchful waiting was a reasonable strategy and that we would regularly evaluate my TSH suppression and presence or absence of thyroid antibodies, and do regular ultrasounds to see if there were any signs of cancer recurrence. My cancer was staged as 1b. Four years out things still look good. An ultrasound 3 years out showed residual thyroid tissue in the thyroid bed but my thyroid suppression is good and I my bloodwork has not shown any signs of thyroid antibodies. The residual tissue did not look cancerous at this point and there were no concerning lymph nodes. So I continue watchful waiting under the care of an endocrinologist who is very experienced with thyroid cancers. I think you would benefit from having an endocrinologist who is experienced in treating thyroid cancer and perhaps an evaluation with a radiation oncologist who will partner with you in these decisions. Make sure you understand everything so that you can make a well informed decision.

I really appreciate your reply. Your suggestions are encouraging and I hope they apply in my situation-everyone is different so we will see when I find out more.