RAI for hashimotos

[Brucergoldberg]

I know I may be bashed for asking this but someone suggested that since i cant tolerate thyroid medication because my thryoid is not completely dead, to have RAI to blast it off, then go on full replacement.

I only have hashimotos.

Has anyone had this, or know anyone who has? was going to have removal, thought i would start with RAI first?

[joplin1975]

I'm certainly not going to "blast" you as every time I read one of your posts, I think "gosh, if I were him I'd get that sucker outta there ASAP."

That said, [qualifying it all by saying I'm no expert, new to this, and have had a relatively straight forward/easy experience with minimal symptoms], I'd hesitate to go the RAI route until certain questions/concerns were considered:

1) Again, given what you've been through, I -- personally -- would *NEED* to have a full pathology work up. All these tests have, to my understanding, limitations and the only way to get complete path is surgical removal and a path exam.

2) I don't know if this should be a concern or not, but I would be curious to know...if you aren't getting enough uptake to get accurate results for a RAIU, would your thyroid even be functioning enough to uptake enough radioactive iodine to have a successful ablation? My medical team wouldn't move forward with the RAI until my TSH was around 40ish. I can't recall your TSH, but if I am recalling correctly, it seem even off any kind of meds, your TSH wasn't that high, yes?

3) Both surgery and the RAI have side effects/impact your life. That's me stating the obvious. And everyone has different experiences. That said, I found the mental/emotional side of RAI to be more difficult. First, there was going from hypo to hyp-WHOA (pre-RAI my TSH was 71...I don't know what it was during/after but I felt I was hit by a train). Then there was the 10 days of stepped down isolation. I don't have kids, but not being able to be around my husband and pets "fully" when you can't "see" anything wrong was a bummer. Add to that, people "get" surgery. There's a scar, bandages etc..you can't "see" anything with RAI. Also I didn't have to follow the two week low iodine diet, but it sounds rather miserable. So you could potentially be talking about three full weeks of un-fun stuff vs (for me) 10 days of surgery recovery.

4) Keep in mind I'm fully expecting to have to do another round of RAI next year. I know Andros mentioned she's had to do it three times. In addition to that, without the ability to get an accurate read on your uptake and therefore an accurate scan, they won't know how successfull it was. So you could potentially still be experiencing symptoms without knowing if the thyroid has been completely destroyed. So there could, potentially, be a guessing game going on about to RAI again or to not RAI again. The take home message is that, sure, it's nice to pop a pill, wait a certain time and think things will begin to improve, but that's not always the case. Nothing with thyroid stuff is cut and dry, but this seems little more "messy" than staight up surgery, IMHO.

Good luck with your decision.

[Andros]

I'm certainly not going to "blast" you as every time I read one of your posts, I think "gosh, if I were him I'd get that sucker outta there ASAP."

That said, [qualifying it all by saying I'm no expert, new to this, and have had a relatively straight forward/easy experience with minimal symptoms], I'd hesitate to go the RAI route until certain questions/concerns were considered:

1) Again, given what you've been through, I -- personally -- would *NEED* to have a full pathology work up. All these tests have, to my understanding, limitations and the only way to get complete path is surgical removal and a path exam.

2) I don't know if this should be a concern or not, but I would be curious to know...if you aren't getting enough uptake to get accurate results for a RAIU, would your thyroid even be functioning enough to uptake enough radioactive iodine to have a successful ablation? My medical team wouldn't move forward with the RAI until my TSH was around 40ish. I can't recall your TSH, but if I am recalling correctly, it seem even off any kind of meds, your TSH wasn't that high, yes?

3) Both surgery and the RAI have side effects/impact your life. That's me stating the obvious. And everyone has different experiences. That said, I found the mental/emotional side of RAI to be more difficult. First, there was going from hypo to hyp-WHOA (pre-RAI my TSH was 71...I don't know what it was during/after but I felt I was hit by a train). Then there was the 10 days of stepped down isolation. I don't have kids, but not being able to be around my husband and pets "fully" when you can't "see" anything wrong was a bummer. Add to that, people "get" surgery. There's a scar, bandages etc..you can't "see" anything with RAI. Also I didn't have to follow the two week low iodine diet, but it sounds rather miserable. So you could potentially be talking about three full weeks of un-fun stuff vs (for me) 10 days of surgery recovery.

4) Keep in mind I'm fully expecting to have to do another round of RAI next year. I know Andros mentioned she's had to do it three times. In addition to that, without the ability to get an accurate read on your uptake and therefore an accurate scan, they won't know how successfull it was. So you could potentially still be experiencing symptoms without knowing if the thyroid has been completely destroyed. So there could, potentially, be a guessing game going on about to RAI again or to not RAI again. The take home message is that, sure, it's nice to pop a pill, wait a certain time and think things will begin to improve, but that's not always the case. Nothing with thyroid stuff is cut and dry, but this seems little more "messy" than staight up surgery, IMHO.

Good luck with your decision.

You nailed it on the "uptake".

[Brucergoldberg]

my uptake was bad because doofus's didnt tell me to stop taking my adapters, one of which has iodine in it. In proper prepping on the scan, thats why it showed blocked@!