Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi Jody, Thanks for your help. What's the old saying...I wish I knew then, what I know now Unfortunately, I can't turn back the clock. I had the RAI on November 8 last year. I must admit, I was amazed at how quickly my symptoms were brought " under control " and did feel great for weeks...still do, other than the eye thing going on. My mother had RAI about 45 years ago, and now at 76 has been on hypo meds for a couple of years. As far as I know, she's never had any other problems. Up here we can't just make an appt with an ophthalmalogist...we have to be referred. I'm going to ask the dr on Thursday about seeing someone. I remember specifically asking the dr if the RAI would make my chances greater of getting eye problems...he said that if someone were to get the eye disease, it happens early on in the disease, and not to someone who's been sick for as long as I had been??? Does the dry/gritty feeling ever go away or is it something that's permanent once you have it? Take care... It makes me so angry when some doctor tells someone RAI will *cure* graves disease. There is no cure for graves, remission yes, but no cure... You need to find an ophthalmologist who knows and understand the graves or thyroid eye disease. I had an optometrist telling me for 3 years I did not have any signs for the GO. When did you have the RAI? It continues to kill off the thyroid for a long time after, some say up to a year, others for up to 10 years. When you see this doctor, ask him to run a TSI antibody on you and see what those levels are. The higher the TSI antibodies the greater the risk for what your going through to be our unique eye disease. It is not something you want to delay, so please, call an ophthalmologist and make an appointment...just make sure he knows and understands the eye disease. Take care, and keep posting, Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi Jody, Thanks for your help. What's the old saying...I wish I knew then, what I know now Unfortunately, I can't turn back the clock. I had the RAI on November 8 last year. I must admit, I was amazed at how quickly my symptoms were brought " under control " and did feel great for weeks...still do, other than the eye thing going on. My mother had RAI about 45 years ago, and now at 76 has been on hypo meds for a couple of years. As far as I know, she's never had any other problems. Up here we can't just make an appt with an ophthalmalogist...we have to be referred. I'm going to ask the dr on Thursday about seeing someone. I remember specifically asking the dr if the RAI would make my chances greater of getting eye problems...he said that if someone were to get the eye disease, it happens early on in the disease, and not to someone who's been sick for as long as I had been??? Does the dry/gritty feeling ever go away or is it something that's permanent once you have it? Take care... It makes me so angry when some doctor tells someone RAI will *cure* graves disease. There is no cure for graves, remission yes, but no cure... You need to find an ophthalmologist who knows and understand the graves or thyroid eye disease. I had an optometrist telling me for 3 years I did not have any signs for the GO. When did you have the RAI? It continues to kill off the thyroid for a long time after, some say up to a year, others for up to 10 years. When you see this doctor, ask him to run a TSI antibody on you and see what those levels are. The higher the TSI antibodies the greater the risk for what your going through to be our unique eye disease. It is not something you want to delay, so please, call an ophthalmologist and make an appointment...just make sure he knows and understands the eye disease. Take care, and keep posting, Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi Jody, Thanks for your help. What's the old saying...I wish I knew then, what I know now Unfortunately, I can't turn back the clock. I had the RAI on November 8 last year. I must admit, I was amazed at how quickly my symptoms were brought " under control " and did feel great for weeks...still do, other than the eye thing going on. My mother had RAI about 45 years ago, and now at 76 has been on hypo meds for a couple of years. As far as I know, she's never had any other problems. Up here we can't just make an appt with an ophthalmalogist...we have to be referred. I'm going to ask the dr on Thursday about seeing someone. I remember specifically asking the dr if the RAI would make my chances greater of getting eye problems...he said that if someone were to get the eye disease, it happens early on in the disease, and not to someone who's been sick for as long as I had been??? Does the dry/gritty feeling ever go away or is it something that's permanent once you have it? Take care... It makes me so angry when some doctor tells someone RAI will *cure* graves disease. There is no cure for graves, remission yes, but no cure... You need to find an ophthalmologist who knows and understand the graves or thyroid eye disease. I had an optometrist telling me for 3 years I did not have any signs for the GO. When did you have the RAI? It continues to kill off the thyroid for a long time after, some say up to a year, others for up to 10 years. When you see this doctor, ask him to run a TSI antibody on you and see what those levels are. The higher the TSI antibodies the greater the risk for what your going through to be our unique eye disease. It is not something you want to delay, so please, call an ophthalmologist and make an appointment...just make sure he knows and understands the eye disease. Take care, and keep posting, Jody Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi , Your doctor lied to you regarding the eye disease and RAI. That is pretty standard knowledge, but it must be we have to ask for it rather than be told about it in the beginning. Your doctor either shouldn't be treating eye disease or he out and out lied to you...shame on him! As for the dry/gritty eyes. Well I am on a non-traditional eye treatment as my TSI antibodies were elevated so I asked to be put on one of the antithyroid drugs to suppress them so they can no longer be counted. It is the same antibodies for both graves and the eye disease and RAI tends to raise the TSI output as the thyroid stuggles to survive. This treatment is working well for me. I was put on low dose PTU (doctors both said PTU works better on the eyes) and the dry/gritty feeling is doing so much better. I do still get it from time to time but it is not constant. I use Refresh Plus individual vials of eye drops and that works for me. Most days I don't use it anymore, but on the days when it is bad, once or twice a day tends to take care of it. Do not use any drops that say 'gets the red out' they are not healthy for us at all. Use the natural tears one. If you do a search in the archives for eyes or eye drops, you may find the posts where other people have also recommended different brands. Make sure your eyes are not getting really dry at night. Mine were so bad in the beginning that my eyelid would stick to the cornea, my ophtho said I was lucky they hadn't torn. So if yours are sticking in the morning, might be worth a shot to use either the night Gel or keep a wet washcloth next to the bed to soak your eyes in before trying to attempt to open them in the morning. I hope your doc lets you see an ophtho up there! Take care, Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi , Your doctor lied to you regarding the eye disease and RAI. That is pretty standard knowledge, but it must be we have to ask for it rather than be told about it in the beginning. Your doctor either shouldn't be treating eye disease or he out and out lied to you...shame on him! As for the dry/gritty eyes. Well I am on a non-traditional eye treatment as my TSI antibodies were elevated so I asked to be put on one of the antithyroid drugs to suppress them so they can no longer be counted. It is the same antibodies for both graves and the eye disease and RAI tends to raise the TSI output as the thyroid stuggles to survive. This treatment is working well for me. I was put on low dose PTU (doctors both said PTU works better on the eyes) and the dry/gritty feeling is doing so much better. I do still get it from time to time but it is not constant. I use Refresh Plus individual vials of eye drops and that works for me. Most days I don't use it anymore, but on the days when it is bad, once or twice a day tends to take care of it. Do not use any drops that say 'gets the red out' they are not healthy for us at all. Use the natural tears one. If you do a search in the archives for eyes or eye drops, you may find the posts where other people have also recommended different brands. Make sure your eyes are not getting really dry at night. Mine were so bad in the beginning that my eyelid would stick to the cornea, my ophtho said I was lucky they hadn't torn. So if yours are sticking in the morning, might be worth a shot to use either the night Gel or keep a wet washcloth next to the bed to soak your eyes in before trying to attempt to open them in the morning. I hope your doc lets you see an ophtho up there! Take care, Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2002 Report Share Posted February 11, 2002 Hi , Your doctor lied to you regarding the eye disease and RAI. That is pretty standard knowledge, but it must be we have to ask for it rather than be told about it in the beginning. Your doctor either shouldn't be treating eye disease or he out and out lied to you...shame on him! As for the dry/gritty eyes. Well I am on a non-traditional eye treatment as my TSI antibodies were elevated so I asked to be put on one of the antithyroid drugs to suppress them so they can no longer be counted. It is the same antibodies for both graves and the eye disease and RAI tends to raise the TSI output as the thyroid stuggles to survive. This treatment is working well for me. I was put on low dose PTU (doctors both said PTU works better on the eyes) and the dry/gritty feeling is doing so much better. I do still get it from time to time but it is not constant. I use Refresh Plus individual vials of eye drops and that works for me. Most days I don't use it anymore, but on the days when it is bad, once or twice a day tends to take care of it. Do not use any drops that say 'gets the red out' they are not healthy for us at all. Use the natural tears one. If you do a search in the archives for eyes or eye drops, you may find the posts where other people have also recommended different brands. Make sure your eyes are not getting really dry at night. Mine were so bad in the beginning that my eyelid would stick to the cornea, my ophtho said I was lucky they hadn't torn. So if yours are sticking in the morning, might be worth a shot to use either the night Gel or keep a wet washcloth next to the bed to soak your eyes in before trying to attempt to open them in the morning. I hope your doc lets you see an ophtho up there! Take care, Jody _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2004 Report Share Posted August 10, 2004 Hi All, On July 7 I went in for a colonoscopy for a small amount of bleeding. I figured routine, no big deal. I have had polyps before so I just assumed, and you know what they say about about assumption. Dr removed 4 polyps and sent them off for biopsy. One came back malignant to his surprise and mine. He decides that he can go back in using a flexible sigmoidscopy and spray a special iodine to highlight all the areas of squamous cells. He says it is normally a 5-10 minute process. We did this last Wednesday. He received another surprise when he did this at the extent of the highlighted areas he had to remove. What was supposed to 5-10 min. turned into 45 minutes. I believe he also removed a lymph node to be tested for cells. Now I am, to say the least, a little scared. I remember him saying something about resection or I may have imagined it. I was just so upset about it all. I go back in Friday for the latest results. What happens next? Thanks for a place to vent. My family says not to worry about it yet. Well it is not them. Pedgie Quote Link to comment Share on other sites More sharing options...
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