[Anonymous November 3, 1996 at 1:29 am Post count: 93172]

#1058308

Hi Lynn, Sorry to hear it’s back….I can only imagine how you must be feeling after being in “total remission”, and feeling good again, only to go bad again. I’m just beginning to feel like my old self again, after dealing with my GD for the last several months…I’ve been back to work for 2 weeks after being off for the last 4 months. You’re right…this board and the people here are your life-line emotionally, as well as being a trememdous source of information…I did the I131 “atomic cocktail”, and so far, I don’t regret it. The medication cure seems to always lead to recurrances of this lovely disease. Who needs that?! The thyroid replacement therapy isn’t really that bad…not compared to being hypo…I hated that. I’d rather be hyper, but not with all the rest of those symptoms. I could hardly hold a glass of water, my tremors got so bad. So, good luck with your decision making and your course of therapy, read this board, and become a member of the NGDF ( National Graves Disease Foundation) by sending them a self-addressed stamped envelope to 2 Tsitsi Ct., Brevard, North Carolina 28712-9263…they have lots of info…Welcome to the group. Rachel

[Anonymous November 8, 1996 at 5:19 pm Post count: 93172]

#1168214

Don’t freak out just yet. I, too, was diagnosed almost a year ago, and it sounds like you’re in a similar situation as I was, i.e., no serious eye problems. Well, I’m doing just FINE. I’ve been on tapazole since January and feel great. There’s a good chance I will go off the drug shortly as I seem to be in remission, and I know that there’s always the possibility that it may come back, but…I’ll deal with that when, and if, the time comes. I’m very hopeful. I recommend giving the Tapazole a go…what have you got to lose as long as you don’t get worse? I say all this because when I was first diagnosed, I got really freaked out. It’s important to be realistic, true, but it’s also important to take it as it comes…you may be one of the lucky ones who will go into permanent remission and won’t need iodine or surgery. It’s possible since you don’t seem to be in too bad of shape from the get go. Good luck. Feel free to email me if you need anything else.

[Anonymous March 4, 1999 at 7:52 pm Post count: 93172]

#1168215

today i was diagnosed with graves disease. the endocrinologist gave me the three options mentioned in mostly all of the experiences i have read about so far. i originally went to my primary physician because of becoming unusually tired when exerting myself above average and a fast heart rate. so, i was surprised, yet after reading a bit about it, i can now attribute many symptoms to this disease. just now i glanced through the messages and am more confused than ever about whether or not to elect PTU (which i presume means the drugs to repress the thyroid) or RAI. I was leaning towards the latter since that it what was suggested by my endocrinologist. Could someone out there give me their considerations when making the choice?

Thanks.
Santiago

[Anonymous March 4, 1999 at 8:42 pm Post count: 93172]

#1168216

I REALLY recommend, Santiago, that you get a book that discusses the situation in layman’s language, and provides good information. There are several. Two that I found very helpful for me are THE THYROID SOURCEBOOK by Sara Rosenthal and YOUR THYROID: A Home Reference, by Doctors Ridgway, Cooper and Wood. There are other good ones listed on the National Graves’ Disease Foundation web site. You should be able to find them at a library, or at a local bookstore. You need to understand your options, and be able to discuss them with your doctor. I know it can be confusing at first, but doing a little bit of research by reading the appropriate chapters in these books can help a lot.

As far as what you decide: There are medical reasons for choosing one treatment over another, and for these reasons you need to talk with your doctor. There are also some personal reasons for making a selection (with your doctor’s agreement) and those are going to be very specific to YOU. My reasons for choosing RAI involved my age, an adverse reaction to one of the antithyroid drugs, and an overwhelming desire never to be hyperthyroid again in my life. (Two personal, one medical) I wanted the situation FIXED. Now. Well, it doesn’t quite happen that quickly, but a year or so after RAI I was healthy again, and I have no regrets. What you decide has to take into consideration your own feelings and specific medical condition.

I wish you luck with your decision. I know it can be a hard one.

Bobbi

[Anonymous March 4, 1999 at 11:28 pm Post count: 93172]

#1168217

I was diagnosed in NOV. I had RAI in Dec. I am going for my 3 month check up in a couple weeks.
I was on the PTU for about a month before I got in to see my Endo and it’s been a couple of months since I had the RAI so that’s why I fiqured I would write to you.
In my experience, and everyone’s is different but it’s been pretty hard to deal with. I have an 8 year old and a 3 year old and I work about 35 hours a week.
I’ve had days and weeks where I felt really, really, good and other days when I couldn’t even make myself get out of bed. That is what’s so hard. This is a disease that effects everyone and unfortunately little children don’t understand it. They’ve been extremely good through all of this and I give all the credit to my husband, he after all was the one who pushed me to go to the doc. He knew something was wrong. I of course, didn’t want to see it or admit it but it’s hard to refute 2 blood tests.
The RAI was surprisingly easy, and I felt no effects from it and the time away from the kids seemed to refresh me a little bit even though I missed them like crazy.
I could tell a few weeks later though when it started to work, my hands trembled and it was embarrassing. My heart seemed to go into overdrive and it kept me awake all the time. I’m on Inderol now and it helps for the most part but it was really scary for me to take a drug that slows down the heart. I am quite paranoid I will take too much or something.
Like I said before though, you just really have to take one day at a time and try not to let it get you down.
Position yourself with a great group of support people. I enlisted a couple of trusted coworkers, a couple of friends, my husband, and my family. Your support people will notice things that you may not and anything you can tell your doc will help him/her.
I hope I’m not scaring you. Please don’t be. It just that it took time for your body to get out of sorts and it takes time to get it straightened out again and that is what’s so frustrating for me as I’m not a patient person at all.

As far as the do you take PTU or RAI controversy: Here’ strictly my opinion: I have had both and I felt pretty much the same but my doc suggested the RAI because he said I could have a drug reaction to the PTU if I took it too long. However, I know someone who has been taking PTU for over a year, and he is expected to be finished w/ his treatment in about 6 months. He’s never had a reaction and he seems to be handling this better than I.
I would probably have the RAI done again if I need to rather than go back to PTU just because I’m not a patient person and it’s supposed to be a permanent solution where as the Ptu; it may or may not come back.
Well, I know you probably feel like I’ve written a book and I’m sorry but I know what it’s like to be unsure and wish you had someone to talk to who has been through it. I hope I’ve helped you and if you ever want to contact me go ahead I’d love to know how you get along.
See you
Anne

[Anonymous March 5, 1999 at 12:51 am Post count: 93172]

#1168218

Santiago,
I was diagnosed with Graves disease a year and a half ago. My Doctor went over the 3 options and we tried the RAI first. Initially it seemed to work and I was put on synthroid, but then my thyroid seemed to recover and I was hyperthyroid again . I was then told it may take up to 3 times before it would work , I had been under the impression that once was all it that would be needed. I was then put on antithyroid drugs, but unfortunately I had an allergic reaction to them. In July of this past year I had a Thyroidectomy . It took 2-3 weeks to recover and I now feel better than I have in years. I take synthroid everyday and have my TSH levels checked every 4-6 months to make sure I am on the right dosage. For me the surgery was the best choice and I wish I had looked into it earlier. Please review all your options thoroughly with your Doctor and get as much information as you can. I hope this helps and I wish you the best with your treatment.
Laura

[Anonymous March 6, 1999 at 7:29 pm Post count: 93172]

#1168219

I sympothize with you. I recently found out about my little confused thyroid. I hope I dont offend you or anyone else with my humor, but it has kept me going. I also recommend the THYROID SOURCE BOOK. The same day I found out, I went directly to the bookstore, to find out what in the world a thyroid does and what to do to fix it. If it helps any I am a newbie also and still feel a little nervousnesss. I am keeping you in my prayers,as well as everyone else on this BB.

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