Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 Hi Ron, Have you tried millipore tape? it's usually the adhesive in tapes that cause problems but some of the newer tapes aren't troublesome. Have you tried antioxidants? B vitamins offer benefits as do alpha lipoic acid and CoQ-10. Stress reduction also helps the immune system heal, and stress, sugar and saturated fats directly lead to inflammation. Wishing you the best on your trip, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 Hi Elaine, TSH can take a very long time to rise when you've been hyper, and if you have TSH receptor antibodies (increased after RAI) they falsely lower TSH. TSH can't be used to determine if you're hyper when you have the antibodies. Total T4 is often falsely increased in women especially if they're on estrogens or take non-steroidal anti-inflammatory meds. An FT4 level is much more accurate, and it's important to also be tested for FT3. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 ROD, For my own info, I wonder if the docs have treated you with prednisone now or in the past? Did it work for you? Jae > Do many group members have what they consider severe TED? > I try my best to be in an up mood, and I know that mood and > stress (or lack thereof) really affect my eyes. Yet some days like > today I am totally debilitated by eyes that are so inflamed that I > can't leave the house. I can't even sit in a room without the > curtains down. More specific, both of my eyes feel so gritty that it > hurts to open them & it also hurts to shut them. Getting sleep is > more of a problem than help. I can't use tape on my eyes, as > that seems to increase inflamation. Yet if I sleep " wrong " and > get my eyes rub on the sheets or pillow, my eyes sometimes get > scratched, etc. I've had corneal ulcerations...but not in the past > year. I've had terrible double vision, but that is 95% gone for > almost a year now. And now I'm having trouble with my eyelids > that just aren't long enough to stay closed when I sleep. Anyway, > sorry, I'm rambling. I'm just so upset. I'm leaving on a trip to > Montreal, Toronto and Boston on Wednesday morning, and if I > had to pack today, I'd just open a suitcase and throw whatever I > could find in, and deal with it later. I can't postpone the trip > without creating a major relationship problem. Ironcially I haven't > even gone through my last minute 2 day panic of getting ready > yet...since my eyes hurt too much to deal with it. I've seen my > neuro opthomologist, an endo who is alright, and my great > alternative healer...all helpful, but all unable to offer any > suggestions that I haven't already tried. The PTU is helpful, and > the Genteal eye gel & sterile artificial tears are great, and I'm > taking 2 tablespoons of flax oil daily. I'm also taking > homeopathic baths once a day. I don't know what else I can do. > > Well, for anyone who read all of this drama above, thank you. I > guess I'm just feeling sorry for myself. And that doesn't really get > anywhere. > > Thanks. > > Best, > > Ron > > San Francisco...GD since 4/01, taking 150mg PTU a day (50mg. > every 8 hours). Have no GD current problems except for extreme > TED eye problems. > > <image.tiff> > > > ------------------------------------- > 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 do 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 September 7, 2003 Report Share Posted September 7, 2003 Ron, from what I've read in Elaine's book, I remember hearing that Tapazole actually was the better choice for people with TED. I wish I could recall just where I read it at so I could retype it here for you. As Jae mentioned, I've also heard that prednisone is also helpful for the TED. Has your opthomologist not ever mentioned the prednisone as helpful? Sandy~Houston Re: TED (severe) ROD, For my own info, I wonder if the docs have treated you with prednisone now or in the past? Did it work for you? Jae > Do many group members have what they consider severe TED? > I try my best to be in an up mood, and I know that mood and > stress (or lack thereof) really affect my eyes. Yet some days like > today I am totally debilitated by eyes that are so inflamed that I > can't leave the house. I can't even sit in a room without the > curtains down. More specific, both of my eyes feel so gritty that it > hurts to open them & it also hurts to shut them. Getting sleep is > more of a problem than help. I can't use tape on my eyes, as > that seems to increase inflamation. Yet if I sleep " wrong " and > get my eyes rub on the sheets or pillow, my eyes sometimes get > scratched, etc. I've had corneal ulcerations...but not in the past > year. I've had terrible double vision, but that is 95% gone for > almost a year now. And now I'm having trouble with my eyelids > that just aren't long enough to stay closed when I sleep. Anyway, > sorry, I'm rambling. I'm just so upset. I'm leaving on a trip to > Montreal, Toronto and Boston on Wednesday morning, and if I > had to pack today, I'd just open a suitcase and throw whatever I > could find in, and deal with it later. I can't postpone the trip > without creating a major relationship problem. Ironcially I haven't > even gone through my last minute 2 day panic of getting ready > yet...since my eyes hurt too much to deal with it. I've seen my > neuro opthomologist, an endo who is alright, and my great > alternative healer...all helpful, but all unable to offer any > suggestions that I haven't already tried. The PTU is helpful, and > the Genteal eye gel & sterile artificial tears are great, and I'm > taking 2 tablespoons of flax oil daily. I'm also taking > homeopathic baths once a day. I don't know what else I can do. > > Well, for anyone who read all of this drama above, thank you. I > guess I'm just feeling sorry for myself. And that doesn't really get > anywhere. > > Thanks. > > Best, > > Ron > > San Francisco...GD since 4/01, taking 150mg PTU a day (50mg. > every 8 hours). Have no GD current problems except for extreme > TED eye problems. > > <image.tiff> > > > ------------------------------------- > 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 do 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 September 7, 2003 Report Share Posted September 7, 2003 Ron, from what I've read in Elaine's book, I remember hearing that Tapazole actually was the better choice for people with TED. I wish I could recall just where I read it at so I could retype it here for you. As Jae mentioned, I've also heard that prednisone is also helpful for the TED. Has your opthomologist not ever mentioned the prednisone as helpful? Sandy~Houston Re: TED (severe) ROD, For my own info, I wonder if the docs have treated you with prednisone now or in the past? Did it work for you? Jae > Do many group members have what they consider severe TED? > I try my best to be in an up mood, and I know that mood and > stress (or lack thereof) really affect my eyes. Yet some days like > today I am totally debilitated by eyes that are so inflamed that I > can't leave the house. I can't even sit in a room without the > curtains down. More specific, both of my eyes feel so gritty that it > hurts to open them & it also hurts to shut them. Getting sleep is > more of a problem than help. I can't use tape on my eyes, as > that seems to increase inflamation. Yet if I sleep " wrong " and > get my eyes rub on the sheets or pillow, my eyes sometimes get > scratched, etc. I've had corneal ulcerations...but not in the past > year. I've had terrible double vision, but that is 95% gone for > almost a year now. And now I'm having trouble with my eyelids > that just aren't long enough to stay closed when I sleep. Anyway, > sorry, I'm rambling. I'm just so upset. I'm leaving on a trip to > Montreal, Toronto and Boston on Wednesday morning, and if I > had to pack today, I'd just open a suitcase and throw whatever I > could find in, and deal with it later. I can't postpone the trip > without creating a major relationship problem. Ironcially I haven't > even gone through my last minute 2 day panic of getting ready > yet...since my eyes hurt too much to deal with it. I've seen my > neuro opthomologist, an endo who is alright, and my great > alternative healer...all helpful, but all unable to offer any > suggestions that I haven't already tried. The PTU is helpful, and > the Genteal eye gel & sterile artificial tears are great, and I'm > taking 2 tablespoons of flax oil daily. I'm also taking > homeopathic baths once a day. I don't know what else I can do. > > Well, for anyone who read all of this drama above, thank you. I > guess I'm just feeling sorry for myself. And that doesn't really get > anywhere. > > Thanks. > > Best, > > Ron > > San Francisco...GD since 4/01, taking 150mg PTU a day (50mg. > every 8 hours). Have no GD current problems except for extreme > TED eye problems. > > <image.tiff> > > > ------------------------------------- > 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 do 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 September 7, 2003 Report Share Posted September 7, 2003 I suffered from TED with my second Graves bout (I appear to be entering a third bout with Graves. Recent blood tests indicate T4 range is 4.2 to 12.0 and I am at 13.2 and at .0 for TSH (range 0.4-4.2). I will be returning for additional tests this month. My TED eventually resulted in double vision. I underwent orbital radiation. It was followed by a short period of prednisone. Prednisone was never a regular or sustained medication. I used PTU exclusively during my first Graves bout, was on PTU and then switched to Tapazole in my second bout, have a prescrption right now to resume Tapazole. The interesting part is though the .0 TSH is startling, I do not exhibit Graves symptoms this go-round. As a matter of fact I would be quicker to think I might have gone hypo. Hence the additional tests. My suggestions about TED are to be as conservative as possible in treating it. I was warned the orbital radiation could result in cataracts within ten years, I also understand the chances of doing it successfully a second time should TED again occur is unlikely. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 I suffered from TED with my second Graves bout (I appear to be entering a third bout with Graves. Recent blood tests indicate T4 range is 4.2 to 12.0 and I am at 13.2 and at .0 for TSH (range 0.4-4.2). I will be returning for additional tests this month. My TED eventually resulted in double vision. I underwent orbital radiation. It was followed by a short period of prednisone. Prednisone was never a regular or sustained medication. I used PTU exclusively during my first Graves bout, was on PTU and then switched to Tapazole in my second bout, have a prescrption right now to resume Tapazole. The interesting part is though the .0 TSH is startling, I do not exhibit Graves symptoms this go-round. As a matter of fact I would be quicker to think I might have gone hypo. Hence the additional tests. My suggestions about TED are to be as conservative as possible in treating it. I was warned the orbital radiation could result in cataracts within ten years, I also understand the chances of doing it successfully a second time should TED again occur is unlikely. Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2003 Report Share Posted September 7, 2003 I didn't have RAI, Elaine. Simply orbital radiation. This threw me. I had been in remission, still am not exhibiting Graves symptoms. More of a slug than a hare. However, I suffer from arthritis and that makes it difficult to separate aches and pains of arthritis from aches and pains associated with Graves. I am to set up to have Free T4 and free T3 and it looks like TSH-third generation. Will those tests do it? I have not been on HRT since the Prempro mess. I do use NSAIDs for the arthritic pain. Elaine Where do forest rangers go to " get away from it all? " Hello daisyelaine On Sunday, September 7, 2003, you wrote > Hi Elaine, > TSH can take a very long time to rise when you've been hyper, and if you have > TSH receptor antibodies (increased after RAI) they falsely lower TSH. TSH > can't be used to determine if you're hyper when you have the antibodies. > Total T4 is often falsely increased in women especially if they're on > estrogens or take non-steroidal anti-inflammatory meds. An FT4 level is much more > accurate, and it's important to also be tested for FT3. Take care, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 Hi Ron, I read your post, and I'm sending wellness wishes your way. I am sorry you are having such a hard time right now with your eyes. If it is any comfort to you, I hear that people do get relief when the TED course burns itself out, and then symptoms often abate. (Hiroshima) recently posted on Mediboard with her pictures, showing her improvement, and her eyes look much less irritated/inflamed now http://www.mediboard.com/ubb/ultimatebb.php?ubb=get_topic;f=1;t=005627. She feels a lot better too. I hope you have relief soon, and also wish you a nice time on your trip. At 07:10 PM 9/7/2003, you wrote: >Do many group members have what they consider severe TED? >I try my best to be in an up mood, and I know that mood and >stress (or lack thereof) really affect my eyes. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2003 Report Share Posted September 8, 2003 In a message dated 9/7/2003 6:14:10 PM Central Daylight Time, swimmerron@... writes: > Do many group members have what they consider severe TED? I try my best > to be in an up mood, and I know that mood and stress (or lack thereof) really > affect my eyes. Yet some days like today I am totally debilitated by eyes > that are so inflamed that I can't leave the house. I can't even sit in a room > without the > curtains down.>> I'm sorry you're having a tough time of it again Ron. But I do sympathize with your predicament. I have moderate-severe TED, depending on the day. I always have severe double vision and have to function most of the time by closing one eye. I work full time and don't have a choice about that either. I always leave the curtains down and even then on sunny days, with dark dark glasses, have to wear a baseball cap. <<> I'm just so upset. I'm leaving on a trip to Montreal, Toronto and Boston > on Wednesday morning, and if I had to pack today, I'd just open a suitcase > and throw whatever I could find in, and deal with it later. I can't postpone > the trip > without creating a major relationship problem. Ironcially I haven't > even gone through my last minute 2 day panic of getting ready > yet...since my eyes hurt too much to deal with it.>> You ever try meditating to relieve the stress? I am not nearly as affected by stress as I once was, mostly because after the murder of my son, nothing that happens now seems bad:-) So I pretty much just take it all in stride and say what the hell. But at bad times, for me, sitting in a quiet room and listening to music and thinking of peaceful places does wonders for stress. Or alternatively, envisioning my doctor develop a severe case of TED!!!! I hope you feel better and can enjoy your trip. Terri Graves disease 1979; treated with RAI; exothalmia 1982, treated with IV steroids; since then on one or another form of replacement hormone. New flare up of TED with severe double vision, swelling in intraocular muscles and inflammation in August of 2002. Currently hypoactive. Treated TED with prednisone. It worked while on prednisone, but TED came back worse after. Underwent Orbital radiation June-July 2003. No change yet. Quote Link to comment Share on other sites More sharing options...
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