Your comment of "coming out of my skin" sounds exactly like what my daughter said at 17 (3 years ago) when she was suffering Grave's disease symptoms. She was crying herselft to sleep and said almost those same words!
It is a VERY tough disease. I thought I understood it 3 years ago, but now it seems I have more questions than answers about my daughter's thyorid.
Here are some things to keep in mind as you work with your current endo (or another one if you need to switch docs):
1) Is it appropriate to have an uptake scan done? My daughter never had this test, and I've read from some posters that she should have had it done. Perhaps others can chime in on the importance of this diagnostic test.
2) Your anti-thyroid meds are undoubtedly part of your treatment, but be sure to research and/or ask for research material on the specific med you are taking. I read research that in my daughter's case, she only had a 20-30% chance of achieving remission on anti-thyroid meds only. We asked the docs, and they agreed that RAI would be a good treatment choice. HOWEVER, neither RAI nor surgery are "done deals' either. It turns out that my daughter still has significant thyroid tissue. We are still awaiting more diagnostic tests to see what the course of future treatment should be.
3) As long as you are being tested for Grave's antibodies, you could go ahead and ask to be tested for Hashi's antibodies (I think the tests are TGab and TPO). Some people are positive for BOTH autoimmune conditions. It is better to know now and see if it affects the treatment plan than to find out later. It looks like my daughter never was tested for Hashi's, and it looks like she has it as well (although I haven't yet had a chance to see the test results).
4) Your doctor should run regular liver function tests, since anti-thyroid drugs are very hard on the liver. Also, ask if you are taking the type of anti-thyroid drug that can have the rare but serious side effect of suppressing your T cells. If that is the case, if you run a fever for any reason you need to go immediately to the ER.
5) If you are ever considered for RAI, you can research and ask questions about the dosage. I have heard that there is some research that can predict if Grave's recurs after RAI or if there is very little thyroid function afterwards, but I have not read this research.
6) "Grave's rage" is a very real thing! I don't know how much it will affect you, but I have heard stories of people feeling suddenly overcome with frustration. Just be sure to prepare yourself and your family for responses like this, and try to get the support that you need.
You sound like you are already ahead of the game by asking all of these questions. Pamper yourself, do the things that help you feel calm and peaceful, and hope for the best as you progress in your treatment. I wish you well!
Please check out my blood work & meds in my journal for July13, 2010.
Any comments on my progress is greatly appreciated!
***HUGS***
Cranky with Graves
Diagnosed 4/8/10
Hi Thyroid Buddies,
This is a great 1st read on the disease:
A Simple Guide to Thyroid Disorders
Also, check this out:
www.medlineplus.gov
9 out of 10 people have RAI or TT if their levels cannot be controlled by anti-thyroid meds within 12 months.
Research...as that is how I learnt all about it.
I think it's too late, Deb........I'm hyper already. So we'll see what the plan is tommorrow. He will probably increase the meth again, right? This is so much fun......I gotta laugh.....ha ha.
Thank you for all your insight and for caring. You are a wonderful person with a big heart and Barry said to thank you, also. He said it seems like I'm learning more from you than my Endo. I am!
****HUGS**** : )
Ok, good questions. I won't stop the MMI. I feel like I'm speeding my butt off. I have the bulging eyes again, my thyroid is swollen, and I'm not hungry AT ALL. In fact, I didn't eat supper the last two nights. I feel like I need a xanax! Although this is probably going to take some of this weight off, it's not a very good feeling. I feel like I'm coming out of my skin, ya know? Barry and other family members and friends are questioning this Dr.s ethics.