Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 My eye problems have never been dramatic, but even so, I spent about a year prior to diagnosis with everyone at work constantly saying " don't worry so much! " when I was feeling totally calm, it used to drive me nuts as I would be sitting down feeling at ease and peaceful and people would read my face wrong. Some people thought I was on speed all the time. It's annoying to be misread, but I do sympathise as I know that I rely on people's body and facial language to interpret what they are really feeling as much as(if not more than!) the next person. I found that discrepency between what I was feeling and what my face was expressing, quite isolating and hard to deal with, especially prior to finding out what was wrong. Now I know what's happening I can see the hesitation in people when they are experiencing confusion between what I am saying and what my face (eyes) might appear to be indicating! Sometimes I try and explain, most of the time I just squint a bit and that seems to make my eyes look more normal! DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: exopthalmos >Date: Mon, 25 Feb 2002 16:37:38 -0800 > > > >My fiance' has GD and he is constantly stared and people think he's giving >them nasty looks also.. It drives him nuts...His mom told him tell them " I >have cancer and I'm dying so look as much as you want " He tried that once >in a Dr's office and the other person was so embarressed. > > > > > >Reply-To: graves_support > >To: graves_support > >Subject: exopthalmos > >Date: Mon, 25 Feb 2002 23:19:20 -0000 > > > >Hey Guys, > > > >I just needed to share with someone who would understand, just back > >from the " speciality " opthlamologist and, according to him, I've > >improved a bunch! Maybe that Masters is not out of the question > >after all. > > > >He mentioned the eyelid surgery and the bone stuff. I definately > >will not do the bone stuff. However, since the experience where a > >sort of intoxicated woman in the grocery thought I was giving > >her " nasty " looks I might consider the eyelid surgery. Anybody out > >there with experience? > >Thanks > >Laurel > > > > >_________________________________________________________________ >Chat with friends online, try MSN Messenger: http://messenger.msn.com > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not >intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the >endorsement of >the listowner. I have no input as to what ads are attached to emails. >-------------------------------------------------------------------------------\ ------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2002 Report Share Posted February 25, 2002 My eye problems have never been dramatic, but even so, I spent about a year prior to diagnosis with everyone at work constantly saying " don't worry so much! " when I was feeling totally calm, it used to drive me nuts as I would be sitting down feeling at ease and peaceful and people would read my face wrong. Some people thought I was on speed all the time. It's annoying to be misread, but I do sympathise as I know that I rely on people's body and facial language to interpret what they are really feeling as much as(if not more than!) the next person. I found that discrepency between what I was feeling and what my face was expressing, quite isolating and hard to deal with, especially prior to finding out what was wrong. Now I know what's happening I can see the hesitation in people when they are experiencing confusion between what I am saying and what my face (eyes) might appear to be indicating! Sometimes I try and explain, most of the time I just squint a bit and that seems to make my eyes look more normal! DAWN ROSE > >Reply-To: graves_support >To: graves_support >Subject: Re: exopthalmos >Date: Mon, 25 Feb 2002 16:37:38 -0800 > > > >My fiance' has GD and he is constantly stared and people think he's giving >them nasty looks also.. It drives him nuts...His mom told him tell them " I >have cancer and I'm dying so look as much as you want " He tried that once >in a Dr's office and the other person was so embarressed. > > > > > >Reply-To: graves_support > >To: graves_support > >Subject: exopthalmos > >Date: Mon, 25 Feb 2002 23:19:20 -0000 > > > >Hey Guys, > > > >I just needed to share with someone who would understand, just back > >from the " speciality " opthlamologist and, according to him, I've > >improved a bunch! Maybe that Masters is not out of the question > >after all. > > > >He mentioned the eyelid surgery and the bone stuff. I definately > >will not do the bone stuff. However, since the experience where a > >sort of intoxicated woman in the grocery thought I was giving > >her " nasty " looks I might consider the eyelid surgery. Anybody out > >there with experience? > >Thanks > >Laurel > > > > >_________________________________________________________________ >Chat with friends online, try MSN Messenger: http://messenger.msn.com > > > >------------------------------------- >The Graves' list is intended for informational purposes only and is not >intended to replace expert medical care. >Please consult your doctor before changing or trying new treatments. >---------------------------------------- > DISCLAIMER > >Advertisments placed on this yahoo groups list does not have the >endorsement of >the listowner. I have no input as to what ads are attached to emails. >-------------------------------------------------------------------------------\ ------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Patti, I have the furrow too from squinting so much....my eyes are extremely light sensitive. I finally started wearing a mysterious smile so I don't look grumpy. Some people call me " Sunshine " because of this, but others probably think I'm nuts. It works on my family though and that's what's important. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Patti, If you haven't gotten a baseline exam on your eyes from an ophthalmologist who is skilled in graves eye disease, do yourself a favor and call around, find one who is skilled in our disease and get in there ASAP for that baseline reading so they have the info available should it be needed down the road. Our eye disease can be brought on, or made worse when we have RAI. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Patti, If you haven't gotten a baseline exam on your eyes from an ophthalmologist who is skilled in graves eye disease, do yourself a favor and call around, find one who is skilled in our disease and get in there ASAP for that baseline reading so they have the info available should it be needed down the road. Our eye disease can be brought on, or made worse when we have RAI. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Patti, If you haven't gotten a baseline exam on your eyes from an ophthalmologist who is skilled in graves eye disease, do yourself a favor and call around, find one who is skilled in our disease and get in there ASAP for that baseline reading so they have the info available should it be needed down the road. Our eye disease can be brought on, or made worse when we have RAI. Jody _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi , For me, I had very minor symptoms on and off over several years and they always went away. Last April, 5 years post RAI, the eye disease hit me full force and I have been dealing with it since then. My theory is because RAI does NOT suppress the TSI antibodies, and there wasn't much left to my thyroid for those antibodies to attack, they started in with the eyes. I am on PTU, very low dose, for my eyes only, and on thyroid replacement hormone for my graves. The PTU is a non-traditional treatment for my eyes, it is not used for that, but I have very good doctors who will push the envelop along with me, in some circumstances. I refused eye radiation totally, and refused steroids unless I tried this, if this didn't work, then I would have followed my doctors recommendations for the steroids, much as I would have hated it. I do need to stress that this PTU therapy for my eyes is working for *me*, it does not mean it will work for everyone, nor does it mean it will work long term, but it is much easier to deal with than the side effects of the steroids, in my opinion, and has made life much easier. Take care, Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hi , For me, I had very minor symptoms on and off over several years and they always went away. Last April, 5 years post RAI, the eye disease hit me full force and I have been dealing with it since then. My theory is because RAI does NOT suppress the TSI antibodies, and there wasn't much left to my thyroid for those antibodies to attack, they started in with the eyes. I am on PTU, very low dose, for my eyes only, and on thyroid replacement hormone for my graves. The PTU is a non-traditional treatment for my eyes, it is not used for that, but I have very good doctors who will push the envelop along with me, in some circumstances. I refused eye radiation totally, and refused steroids unless I tried this, if this didn't work, then I would have followed my doctors recommendations for the steroids, much as I would have hated it. I do need to stress that this PTU therapy for my eyes is working for *me*, it does not mean it will work for everyone, nor does it mean it will work long term, but it is much easier to deal with than the side effects of the steroids, in my opinion, and has made life much easier. Take care, Jody _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
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