Anonymous
Participant
Post count: 93172

I’m so sorry to hear that your doctor scared the wits out of you. I, too, got taken off Tapazole after three weeks. And, I was scared of the options. My endo recommended RAI and said he couldn’t recommend surgery because it’s dangerous when you’re hyper (bleeding is a problem), blah blah (I don’t remember exactly).

Anyway, he upped my beta blockers and told me I had to be off Tapazole for 3 weeks (not the 6 your endo stated) and we scheduled it. However, I panicked. I just couldn’t do it, so I sought a second opinion. It was the best thing I could have done for myself. The second endo (at Mayo in Jacksonville, FL) told me I was not “in crisis” and had some time to make my decision, which made me feel much better. He, too, recommended RAI and said that my levels were such that remission on meds was very unlikely. Just being told that I had some time to think about it and adjust to a choice relieved a TON of my stress, because the local endo had made me feel much more rushed about things. And, the Mayo endo said there was no problem with RAI even though my levels were very high, and he explained why. I spent over an hour asking detailed questions and getting in-depth answers. It was time and money well spent, for me.

If you can, get a second opinion from a university-type hospital that has specialists that you really trust. I don’t think just any old second opinion will ease your mind (it wouldn’t have for me) because this is a huge decision for you to make and you need to feel good about it.

One other thing, I have exercise-induced asthma and had to change beta blockers to make it easier to breathe. If you have asthma and you’re on beta blockers, that could be a factor in your breathing. (Just a random thought as I don’t know your condition.) Or, it could just be the regular hyper stuff.

I wish you the best in getting through this. If only we could always take the time we need to adjust. I cried and cried when I got taken off the Tapazole and was totally shocked, so I understand why you’re upset and afraid.

Just don’t put off taking care of this and go with your gut. If you think you’re sick enough (and you trust your endo) to need surgery ASAP, then don’t feel bad about making a quick decision. You have to do what’s best for you.

Hugs,
Melinda