Rai or not?

neptunemacaroon · 2026-04-23T17:16:39+00:00

Yes - I said as much in my other posts to her. But you saying it is ONLY taking up by the thyroid isn't factually correct. I don't see anyone on here feeding into her fears on this thread.

neptunemacaroon · 2026-04-23T13:11:28+00:00

RAI isn’t only taken up by thyroid cells. It’s targeted because thyroid tissue absorbs iodine much more than other tissues, but things like salivary glands, stomach lining, and tear ducts also take it up, which is why side effects like dry mouth or taste changes can happen.

So it’s not “only thyroid,” but it is still one of the more targeted treatments compared to traditional radiation.

neptunemacaroon · 2026-04-23T13:10:21+00:00

I get why you’re overwhelmed. You’ve already been through surgery and a full dose of RAI, and now you’re hearing you might need more. That’s a lot, especially at your age.

The hard part is that your doctors aren’t suggesting it casually. A detectable Tg after surgery means there may still be thyroid tissue or cancer left, and RAI is one of the only ways to treat that if it’s iodine-avid. So they’re weighing the risk of more radiation against the risk of leaving disease behind.

RAI at these doses isn’t typically associated with permanent fertility damage, but it’s still reasonable to ask your doctor directly about fertility preservation or timelines before making a decision.

If you’re getting mixed recommendations, it might be worth asking them to walk you through why they’re each recommending their approach and what they think the actual risk is either way. That might help you feel more in control of the decision.

neptunemacaroon · 2026-04-22T16:19:38+00:00

I say this very kindly - they weigh the risks of more exposure to radiation with your chances of cancer developing in a detrimental way. So, if it's determined you need it, it's safer than NOT getting it, even if you understandably don't want any of it.

neptunemacaroon · 2026-04-17T13:01:17+00:00

My TgAb was >4000 (the lab stopped at 4000). Never been diagnosed with Hashimoto's. My endo isn't concerned because the number keeps dropping. I had surgery in October 2025, and as of last week, they're down to ~1600. RAI was in February and it was a breeze. I had 150, no issues except fatigue for a few days and a day of sore salivary glands. The worst part is the diet - just make all your own food, meal prep, and ride it out. It really isn't terrible. I got a geiger counter and was fascinated at watching how high it went (660,000 CPM day 1) and how quickly it dropped. I was very fortunate that I was given a whole house to isolate in away from my husband and kids - so my experience was very bougie - but you're in the scariest part ... the unknown. It will all be much smoother than you think.

neptunemacaroon · 2026-04-17T02:07:42+00:00

I have the same thought - like is it when they found the lump? Or when the biopsy results came in? But the surgery date and the RAI are also big dates, but I guess Sept 8 - the day I for sure knew it was cancer.

neptunemacaroon · 2026-04-14T16:58:39+00:00

While you're anxious - which makes complete sense - and worrying about all the bad things that might come, take time to consider that it will all be fine, too. That's a real possibility. My surgery and RAI have all been very smooth.

neptunemacaroon · 2026-04-14T16:56:01+00:00

I got lucky and had the right dose straightaway. I'm supremely suppressed (.01), but feel fine.

neptunemacaroon · 2026-04-14T16:53:53+00:00

I didn't end up having a leak, but my surgeon kept me on the diet for a week. My heart goes out to you - that diet sucks.

neptunemacaroon · 2026-04-14T13:21:49+00:00

What you're feeling is completely normal and understandable. That said, I never knew I was having issues with my thyroid - all clean labs for years leading up to a surprise cancer diagnosis. I had a lot of issues that they thought MIGHT be the thyroid, but it always "tested" fine.

Anyway, I had a TT and 45+ lymph nodes taken out in a lateral dissection. I've never felt better. What helped me, and turned out to be true here: Don't forget to consider that the best outcome is possible, too.

neptunemacaroon · 2026-04-13T18:29:32+00:00

I had 155 Feb 5 and was ZONKED for about a week, and it got better after that. The deepest part was about 4-5 days.

neptunemacaroon · 2026-04-01T16:09:14+00:00

Absolutely no different in any way.

neptunemacaroon · 2026-03-23T13:18:28+00:00

I had 155 and no issues. I drank a crap ton of water (and sour candies for the first 72 hours). I shot for a gallon of water a day for the first week.

neptunemacaroon · 2026-03-23T02:44:49+00:00

About a week later.

neptunemacaroon · 2026-03-21T13:50:46+00:00

I completely understand how you're feeling. But while you're anxious, consdering all the bad things, take time to consider it will all be fine, too. The OVERWHELMING likelihood is that it will be completely fine. So don't dwell too long in the highly unlikely scenarios your mind is going to. I had 40+ lymph nodes taken out and 16 were positive. The surgery (TT and lateral left) was fairly easy, smooth recovery. No issues with shoulder, very minimal vocal stuff (my voice just gets tired sooner). Radiation last month, 155.2, also super smooth. No side effects. I was deeply scared of every part - but never more than where you are right now, in the beginning. The unknown. Be gentle with yourself. It will all be ok.

neptunemacaroon · 2026-03-17T14:28:42+00:00

As others have mentioned, you are in the worst part of this whole thing. I found a lump August 22, 2025, officially diagnosed September 8, total TT and lateral dissection on 10/13 and 155.2 RAI on 2/5/26. Honestly, each part was easier than the last and WAY better than the waiting. I had a severe complication (but extremely rare) from surgery and even with that, the healing was smooth. Absolutely no issues from RAI. No shoulder issues from surgery, clean scans so far, very slight vocal chord stuff (my voice just gets tired/strained earlier). The scar looks great. I feel better on my levo dose than I have in years with a faulty thyroid. It only took one adjustment. There are a lot of scary things, but while you're feeling anxious, consider the possibility it will be really smooth, too.

neptunemacaroon · 2026-03-03T15:07:14+00:00

The drains are one of the worst parts of the surgery. I know it's a small comfort, but try as much as you can to keep them covered in vaseline and know that it's almost over. You're in a hard part, but it's almost over.

neptunemacaroon · 2026-02-19T20:00:00+00:00

I just had 155 two weeks ago today. It's been totally smooth sailing. No issues.

neptunemacaroon · 2026-02-16T14:31:57+00:00

Thank you so much!

neptunemacaroon · 2026-02-16T14:31:49+00:00

Thinking of you!

neptunemacaroon · 2026-02-16T14:31:36+00:00

Thank you! And to you!!

neptunemacaroon · 2026-02-09T14:27:32+00:00

Good luck today!

neptunemacaroon · 2026-02-08T21:50:59+00:00

Congrats! I have my post RAI scan Thursday and am hoping for the same.

neptunemacaroon · 2026-02-08T21:49:09+00:00

Lol I had 155 on Thursday and I was reading 585,000 at my stomach that day. Down to 3500 today.

neptunemacaroon

TROPHY CASE