Valerie - Graves

Just curious - how do you treat Graves? Did you do RAI?

I was on methimazole for two years which worked really well for me. I did the liver function tests every 6 weeks with no effects. I was pulled off of it after two years because of long term effects. However, two endocrinologists said it was likely I would go into remission based on studies they have read. If I didn't I would have needed rai or removal. Luckily I held normal t3 and t4 counts and have been for 4 or 5 years. Every time my pulse is slightly high I get a little anxious because my pulse was sometimes up to 132 when I was battling it.

My sister had her thyroid removed is that thyroidectomy? I'm not sure of the terminology and high dose RAI twice for thyroid cancer. She had side effects from both. Her tumor was very large so when they did surgery they messed up a vocal chord, which she had surgery on in October. The RAI caused her eye to not drain so her eye would tear constantly. She had surgery on that in nov. It took about 14 months to finally get her thyroid replacement meds ( I'm not sure what they are called) right.

How is your daughter doing?

Thanks. I was just curious, although I think I have asked you before (forgot your answer). It's great that you are in remission. We were hoping for that for Holli. Her goiter never really did shrink.

I'm sorry to hear that about your sister. Those are complications that we fear for sure.

Holli was having problems on methimazole. She had a lot of symptoms that could have been side effects but the only way to know was to stop taking it. She was on it for 5 or 6 years with no signs of remission. Her problems have not gone away so we still don't know if they are now permanent from the methimazole or if she has something else going on. You know, the autoimmune curse.

Anyway, she has had no problems from the surgery. She had the robotic under the arm pit thyroid removal. However, it will be a year in March and her levels are still off. It sure takes time to get regulated! Luckily, her doctor is pretty anal about blood work and adjusting meds, so hopefully soon.

Sandi,

I think my sister has tried 2 different thyroid meds because they pulled one from the market. May I ask what types of symptoms she is having?

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I think PTU was the other med. Did they finally pull that one? I know there were awful warnings about it, which is one reason Holli never wanted to take it. There really aren't many choices for treating Graves. The thing that we liked about Methimazole was that it hindered antibodies which can be protective for the eyes.

She has a lot of muscle and nerve pain. Those are listed as side effects. She also has reflux and a lot of bloating. Changing her diet has helped her a lot, but she is working full time and in nursing school, so she has problems keeping up with it. It scares me because it seems a lot like Lupus. She's had some tests though and so far, so good. Still a negative ANA.

Your daughter sounds like a tough cookie. Going to school, working full time, dealing with getting thyroid counts leveled and possibly battling something else. I wish her the best. There are so many other autoimmune disorders as well. My friends sister was thought to have lupus, negative Ana tests but something was def wrong. The Cleveland clinic figured out she had some very rare autoimmune disorder which effects the brain, explaining the nerve pain. She was treated with chemo. She is doing very well now. It took years to figure out what it was.

So my parents dog has been very sick recently. About every five weeks he had been vomiting having bloody diharrea and rectal bleeding. They assumed it was viral/bacterial first few times. However they ran several tests this week and his cortisol levels were very low. He also has very small adrenal glands. They think he has atypical Addison's disease. He is on a special diet and anti-inflammatory medication until Tuesday when he goes back to vet. My poor parents. This will be there 2nd dog with Addison's disease. I know you have had one as well. I told them I can send out my two autoimmune disses therapy dogs to take care of him.

I had a dog with Cushings...the opposite. Very expensive meds as opposed to Addison's. I hope the dog does well!