Radioactive Iodine for Hyperthyroid - Want to chat?

[Jenny in Florida]

So, 19 months ago, I was admitted to the hospital during an episode of atrial fibrillation caused by an overactive thyroid. Since then, I've been on meds to try and control both issues. However, I'm still having occasional episodes of racing/irregular heartbeats, and I was sent to the ER and subsequently admitted for a couple days of observation again just a couple of months ago.

 

I saw a new endocrinologist for a follow-up last week. (The doctor I had seen a couple of times after the first hospitalization has left the practice.) After looking at the results from the testing done during the second hospital stay, he upped my dosages and assigned me to consider the long-term treatment options before I go in for my next appointment. Basically, it is now clear this isn't going to resolved itself on its own, and since staying on the anti-thyroid medication forever is not a great idea, I am supposed to give serious thought to more definitive treatment.

 

As I understand it, I have three options:

 

1. Stay on the methimazole for the foreseeable future. The problem here is that is can apparently lead to liver problems and some other issues. Also, the underlying problem is still there, just held at bay by the combination of medications. And, frankly, although I appreciate that the drugs keep things from getting dangerous, I have felt simply lousy since I started taking them. I have next to no energy, am achy and have gained a significant amount of weight. 

 

2. Do the radioactive iodine treatment to knock out my thyroid. I would then have to go on thyroid replacement medications, but those are apparently much safer for long-term use than what I'm now taking. I will admit to being completely freaked out by this prospect. 

 

3. Have surgery to remove my thyroid. This is considered more invasive than the radioactive iodine treatment. I have never had surgery of any kind. I don't like this plan either.

 

I have been told I can stay on my current drugs "for a while," but it's not a permanent solution. I described how I'm feeling and asked the doctor straight up--with the understanding that there are no guarantees--if he thinks I would feel better if I go for one of the more aggressive treatments (iodine or surgery). He seems to feel very confident that I would. 

 

I have an appointment with my primary care doctor tomorrow, and I do plan to discuss this with him. But I'd love to hear from other folks who've had any experience with this hyperthyroid. Did you have the iodine treatment or surgery? What were your experiences, especially with the iodine, since that seems to be the treatment of choice? Did you feel better afterward? If you opted not to do either one and stay on anti-thyroid drugs for an extended period of time, how did that work out for you? What questions should I ask my doctor(s) to make sure I'm completely informed about my options?

 

Just anything anyone would be wiling to share?

 

I'm normally a very healthy person, and I'm a little overwhelmed at having to think about this. Prior to my thyroid going wacky, the most dramatic medical experiences I'd had were natural childbirth and having a couple of wisdom teeth removed. I am, honestly, a little scared.

[Tammi K]

My husband was in the same place about 25 years ago. He was on medication (I believe it is the same one you are one) but the doctor was pushing for him to choose a 'final solution'. He wasn't fond of either one as both would require him to be on medication for the rest of his life. He figured if he needed meds he might as well stay on the one he was on as he didn't seem to have any side effects.

 

Long story short, he stayed on the medication for about 8 years and had a spontaneous remission and has been fine ever since. Remission is apparently rare but not unheard of.  He spent 8 years waiting to see if there would be side-effects and before that happened, it was no longer an issue.   Now, I'm not saying that will be your result, but if you are feeling comfortable with where you are at the moment, you might just want to take your time and really be sure of your options and the consequences.

 

Best of luck. Sorry I could have been more help with your other options.

[J-rap]

My situation is different, but it did result in one of the treatments you listed.  My thyroid went wacky and after undergoing testing, my doctor thought I might have thyroid cancer.  I had my thyroid removed;  it wasn't cancer, but apparently still looked suspicious enough that it justified removal.  I've been on synthroid replacement for about 15 years, and have never had a single problem.  I have my little pill every day, and feel great!  I'm a very healthy person otherwise and have never had any other health problems.

[Jenny in Florida]

Thanks so much for the comments and stories here (and the ones I've received privately) so far. 

 

I'd still love to hear more thoughts before I go to see my doctor tomorrow. I want to make sure I'm asking all the right questions before I make this decision.

[Tiramisu]

My mom had hyperthyroid disease. She was on meds for about three years, I think, and she was continually told by her doctor it was unsafe to continue and pleaded with to go ahead with the radioactive thyroid treatment. She felt she couldn't go forward at the time because she was helping to care for the very young children of an unstable person. Not long after, she did go into a sudden, complete remission. That was over 15 years ago. Her eyes had become very, very bulgy and they naturally regained their normal appearance, too.