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Hi, Catherine — I was diagnosed with Graves disease at 35 years of age and chose to have RAI treatment. I’m now 50 and have been on the same thyroid medication dosage for as long as I can remember. My doctor and I were able to establish the correct dosage for me right away. My son, who also has the same disease, as well as TED, is still working on getting the right dosage. I’m confident that this will happen soon. My son & I will need to take a little pill for as long as we live, which is not a problem. I’m just grateful that we have easy access to the medication here in the U.S., as I know that this is not true if you live in another foreign country. I experienced some weight gain & hair loss after the RAI treatment, but lost the weight & stopped losing hair right after I started taking the thyroid medication. I’m glad to say that I’m at the right weight for my height & still have lots of hair even at the age of 50. I have no problems physically or emotionally that is thyroid related. Currently, I’m very busy trying to help my son get the right treatment for his TED.
I wish you luck, & I’m very confident that the RAI will also be a success for you, should you choose this type of treatment. Take care.
Regards,
Doloresin reply to: Orbital Decompression Surgery #1074397Hi, Dianne — Your response truly helps a lot & will help me & my family know what questions to ask when we visit Steven’s eye doctor next week. I can’t express in words how grateful I am for your kindness & generosity. I can see you spend a lot of time helping so many people with graves disease, including their families. Thank you so much & God Bless.
Regards,
Doloresin reply to: Orbital Decompression Surgery #1074395Diane, thank you for your reply to Judy. I sent your response to my son so he can read it. My son, Steven, had the decompression surgery done almost a month ago on his right eye. I think his eyelid is retracted, & he tells me it’s still blurry. He’s wearing a patch right now to get through school, & he says his eye feels like it’s going to pop out at times, so the patch helps. He is coming home from AZ to San Diego next week for his check up with his opthalmologist. It looks sounds like more surgery is needed to get the eyelid positioned properly.
Best wishes to all who have this disease & God Bless. Thanks again, Diane.
Dolores
in reply to: Orbital Decompression Surgery #1074392Hello, I would like to thank you & your family for all that you are sharing regarding TED. My son, who is 25 years old, had decompression surgery on his right eye on 1/5/09. It’s been a month almost & it does not seem that the eye has sunk in as much as we would like it to be. He’s from San Diego, but going to school in Arizona, so I don’t see him everyday. He says he wears a patch on his right eye when he goes to school, because the eyelid seems to want to open on its own & the eyeball feels like it’s going to pop out, so the eye patch helps. He’s coming home on 2/13 to meet with his opthalmologist, so we’ll see what is going on. We also saw a radiologist a week 1/2 ago, but she did not recommend eye radiation for the swelling at this time. Perhaps his opthalmologist will prescribe some anti-swelling drug instead to help with the swelling. Did your son have similar problems or sensations after decompression surgery? Perhaps we just need to be more patient…
Again, thank you & God bless you & your family.
in reply to: Support Group Leadership Training Feb 26-28 #1074123Hello, my son Steven has TED & had decompression surgery on 1/5/09. I think he would benefit joining a support group. He currently resides in Avondale, AZ. He is attending school there, but he’s originally from San Diego. I’m also interested in joining a support group so I know in what ways I can help my son. Where can I find the list of where & when the different groups meet, etc.? I actually just signed up as a member of GDF today. I appreciate all your help & God bless you all!
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