[robin]

in reply to: Bilateral Orbital Decompression #1072518

Tracy,
I am very new to this too and wanted to know have you already had the surgery? How long have you been treated and how have you been treated? I myself went through 2 Rai treatments after years of the anti thyroid drugs (on and off). The eye docs. want to keep waiting to see if they do even out and they sort of have gotten better! The drs. don’t want to do surgery too soon in case you do get better. It is a very frustrating and humiliating process to wait but in my case, this might have been the right thing to do. I think my "bad eye" is going down almost enough to match the other. Talking w/Dianne and Peter and reading other peoples struggles here has completely changed my mood in the last few days.
Keep searching …..knowledge is power. Robin.

[robin]

in reply to: Having Surgery in two weeks, and am nervous!! #1073425

My docs only told me to be careful for 24-48 hours! What have they learned since then? No small children and no animals. That was only a few years ago. I’m puzzeled.

[robin]

in reply to: Graves after 23 years? #1072563

My dear I feel your pain. I had to take 2 different doses of the RAI. The first sent my levels off the charts. It is my understanding that they try very hard NOT to kill off all of our thyroid gland. Also, I had cysts found growing on mine after the second round. (My general practioner said "only you could grow new tissue from dead tissue") I have been told it can still grow back after having the RAI. I have been dead on the line normal and then low and now twice they have changed my levothyroxine to bump it back down. Even after 60 years of research into the RAI, I still don’t think they know exactly what is going on. We must keep telling ourselves that we know our own bodies more than anyone (other than GOD) and keep questioning and insisting on someone listening. Hang in there-I’ve lost my hair 3 different times and have had to deal with the bulging eyes, one larger than the other. The dry eyes you need to keep an "eye" on L.O.L. I didn’t know that my eyes running all the time meant that they were actually irritated. I was told about these goggles that you wear at night like a sleep mask- they seem to be working for me. They are a little pricey-I’m unemployed right now, but they are working so much better than the sleep masks. I don’t know if I’m allowed to say a product’s name but call your local opthomoligist and tell him your problem- that is wereI found out about these things! I hope I helped you, just reading everyone else’s struggles has helped me tremendously in just 24 hours! Dianne told me about lubricant drops she uses I’m pretty sure it’s Systane but if not she can correct me. My dad just bought me some today I also use Genteal lubricant. I’ll let you know how this one works-(I think I haven’t been using it enough) Good luck and GOD Bless, Robin

[robin]

in reply to: I’m a new member-with a new problem #1072574

Hey I have not had that exact problem but I did develop severe tooth decay and osteoperosis. I am only 48 and was diagnosed w/osteo-penia soon after being diagnosed w/graves 9 years ago. I think I read that it sucks the calcium out of your body. I’m a brand new member too and learned more yesterday in those conversations than I ever have from a dr. This is a blessing!

[robin]

in reply to: Surgery in Two Days #1072672

Dear Lorrainydaz,

I’m new at this bulletin board stuff but I wanted you to know you are being prayed for. I had 2 different doses of the RAI and my levels still go up and down. I think the key is that you know more about your body and how it responds than any doctor on this earth. Remember to listen to your inner voice. The PTU’s made me constantly catch every little bug or cold that was going around, so I stopped taking them-but that’s another story!! You are going to be fine and I can tell you that just today-talking to Dianne-someone who has been through what we are all going through-made me feel so uplifted and free. I don’t know why I didn’t think to do this before. Please keep us updated on your progress, and remember there are hundreds of thousands of people with our disease (a disease that my Dad told me was not a real disease-like diabetes). Robin

[Author]

Posts