Help/input about Graves disease

[vickiewoehrle00]

I was diag. with Graves disease in Dec.07. I elected to try the tapazol because after some of the research...I was scared of Radioactive Iodine treatment. But regulating me on this medication has proved difficult. I have been bouncing all over the place....hypo...then dropping in normal range...but I certainly am not feeling normal!

Any insights about tapazol....opinions on RAI vs surgery.....would be appreiciated...

Also, exercise and graves.... do it or not? I started biking this week and I am experiencing more of the anxiety symptoms.....not sure if they are related or not?

[HyperCat]

Hi Vickie,

I'm new here and also a Graves sufferer. I was diagnosed in March 2008 but had been having symptoms for about a year before my GP found my goiter and tested me. I have chosen to take Tapazole as well - my thoughts were that I would try the "easiest" treatment first and move onto RAI if it wasn't working.

Some of the RAI stories on the internet are pretty scary and here in Canada, they don't do thyroidectomy unless it's cancerous so there are really only two choices for me. I really don't want to do the RAI but my experience so far has been disappointing to say the least.

After taking the Tapazole for about 14 weeks, I am now experiencing the roller coaster of hyper to hypo. My free T4 before going on it was 76, now it's 6! There was a brief period where I felt "normal", now I feel like I'm in a fog and many other of they hypo symptoms.

I didn't feel much like exercising when I was hyper - struggling to breathe was awful! I try to push myself to get some now as I feel puffy and fat. I must say that I find my muscles are sore a LOT more now than they used to get after exercise. I had anxiety problems for most of my life before I was diagnosed with this, and when I feel anxious I take .25 mg of Xanax and that usually helps (I haven't had any addiction problems with this drug - I can take it or leave it). I also found that the Inderal (Propanalol) helped a lot with that when I was hyper.

I hope there's something here of help to you.

[vickiewoehrle00]

Hypercat-
Sorry to hear about your Graves struggles too....it is a dreadful disease. I didn't realize that you couldn't do surgery in Canada....only RAI huh? I am bummed that there aren't more options out there for this disease.

I have felt "normal" too, during some parts of my treatment. The anxiety and emotional mood swings are the worst symptom! In the last couple of days...I have thought that I was losing my mind....it is so frustrating!

I thought I would start on the Tapazol too....because many things that I read out there said to save the thyroid if at all possible. I am nervous to get rid of it...but in my anxiety ridden state of symptoms....I am ready to do whatever I need to do to feel better. I think that "normal" is something that I will get to experience now and then....but I think that I will probably never feel "normal" on a consistant basis.....don't mean to be a downer...just trying to be realistic!

Hopefully other people who are suffering from Graves will share their expeience and input....it always helps to hear other peoples stories/journeys.

Hang in there!

[midwest1]

I don't have Graves'. I'm at the other end of the spectrum, Hashi's hypo. But I've done a lot of reading about Graves' and know what I would do if I had it. I would NOT do RAI. In case you haven't been told, you need to know that your risk of eye damage from rampant antibodies increases if you take RAI. You risk becoming even more hyper in the weeks/months following the treatment. There is an increased risk of various cancers in the years/decades afterward.

I would find an endo who believes that anti-thyroid drugs can put the disease into remission. Most will push you into RAI, because that's easiest for them to manage. They believe that being hypo is preferable to hyper. Those of us who are hypo can tell you... Endos are the pits at treating it, too. It's not the walk in the park to treat that they would have you believe.

Tapazole can be tricky to dose, but if you have an endo willing to go the extra mile to make it work, you stand a very good chance of going into long periods of remission without being made permanently hypo.

Speaking for myself, if anti-thyroid drugs didn't work, I would opt for surgery at the hands of the most experienced thyroid surgeon I could find. Yes, that would cause permanent hypoT, but at least there would be no risks or side effects of the radiation.

Good luck to you in making the right decision.