Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 In a message dated 6/18/01 10:40:07 AM Central Daylight Time, Fraserk@... writes: Subj: GD and Myasthenia gravis Date: 6/18/01 10:40:07 AM Central Daylight Time From: Fraserk@... (Kate Fraser) Reply-to: hyperthyroidism Hyperthyroidism Hi good folks. I have GD and had RAI but am no way recovered 18 months later. Has any one of you encountered myasthenia gravis? I appear to have many of the symptoms and was curious before my next blood work in July. My doctor has suggested that I might research and come up with ideas of what is wrong. I think that means she's out of ideas. Or maybe just had enough. I dunno. Curious, Kate Kate, what are the symptoms? does it go with Graves? an Amish man I know had it. He had his mercury fillings removed and got better.. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Kim - it has an autoimmune disease with lots of symptoms - the ones that I have that match are: muscular weakness (can't get up stairs without resting half way), shortness of breath, difficulty swallowing, gagging, choking, changed voice, my only facial changes are in my eyelids which do not open when told to. I have been getting many muscle spasms in my neck, legs, and in diaphram. I become weaker as the day goes on. There are web sites about it. Good to hear of someone who recovered. K palomino03@... wrote: In a message dated 6/18/01 10:40:07 AM Central Daylight Time, Fraserk@... writes: Subj: GD and Myasthenia gravis Date: 6/18/01 10:40:07 AM Central Daylight Time From: Fraserk@... (Kate Fraser) Reply-to: hyperthyroidism Hyperthyroidism Hi good folks. I have GD and had RAI but am no way recovered 18 months later. Has any one of you encountered myasthenia gravis? I appear to have many of the symptoms and was curious before my next blood work in July. My doctor has suggested that I might research and come up with ideas of what is wrong. I think that means she's out of ideas. Or maybe just had enough. I dunno. Curious, Kate Kate, what are the symptoms? does it go with Graves? an Amish man I know had it. He had his mercury fillings removed and got better.. Kim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2001 Report Share Posted June 18, 2001 Hi Kate, what are your symptoms? could it just be that you're hypo? hypo can cause symptoms similar to those of MG. A test for acetylcholine receptor antibodies will show if you do have MG. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hi Elaine (?) Biggest symptom is inability to use legs - cant go up hills, can't use stairs, etc. Others as listed on my posting all apply! Thanks for any info, Kate daisyelaine@... wrote: > Hi Kate, > what are your symptoms? could it just be that you're hypo? hypo can cause > symptoms similar to those of MG. A test for acetylcholine receptor antibodies > will show if you do have MG. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Elaine - One more quick question... I have lab work scheduled in July and for one test she has written 'ESR'. What is that test? Thank you in advance Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 Hi Kate, Graves' disease can cause these symptoms. We're all affected differently so not everyone experiences muscle wasting, but some people experience such severe muscle atrophy they have to crawl up stairs. The main muscles affected are the thighs and shoulder girldle. Dr. Arem, in Thyroid Solution, attributes some of this weakness to the deficiencies in vitamin B 6 that we have. Even if you're in treatment and remission, these muscle problems will persist until the nutrient deficiencies are corrected. probably has some good ideas on what other nutrients can help rebuild muscle strength. Myasthenia gravis is a disorder in which autoantibodies destroy the cell receptors at the neuromuscular junction where nerve impulses tell muscles what to do. With the connection severed, you end up unable to control these muscles. The test for acetylcholine receptor antibodies will help in diagnosing MG, but low titers of this antibody are seen in some patients with Graves' disease for reasons that are unclear. In MG, the titers will be very high. Hope this helps, Elaine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2001 Report Share Posted June 19, 2001 It's an erythrocyte sedimentation rate, which is also called a sed rate or a Westergren (for the method we use). In this test, we fill a narrow tube with blood to see how quickly the red cells settle in one hour. In inflammatory conditions and infections, the blood settles quickly and the sed rate is high. The test is helpful in ruling out and diagnosing connective tissue disorders, like rheumatoid arthritis. It's generally normal in Graves' disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 My last SED several months ago was 16!! It was 53 when first diagnosed with GD five years ago. Must be because of TED? Re: GD and Myasthenia gravis It's an erythrocyte sedimentation rate, which is also called a sed rate or a Westergren (for the method we use). In this test, we fill a narrow tube with blood to see how quickly the red cells settle in one hour. In inflammatory conditions and infections, the blood settles quickly and the sed rate is high. The test is helpful in ruling out and diagnosing connective tissue disorders, like rheumatoid arthritis. It's generally normal in Graves' disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2001 Report Share Posted June 20, 2001 Hi Elaine Thank you so much for your info and ideas. As a matter of fact I have been trying to find out about Hoffman's syndrome all morning with minimal success. But yesterday after I wrote to you, I had a brilliant idea and figured out that the SR of the ESR might be sedimentation rate and then I was away. One of the interesting things she appears to be looking at is polymyostitis. She has also ordered CBC /diff, creatine and uric acid as well as FT3, FT4, and TSH. Maybe she is thinking after all. She sometimes is willing to share her ideas and listen to mine and other times she doesn't answer my questions and avoids them and will lie. My husband now comes with me every time and he has heard the lies too. Vent,vent. Yes, I am hypo having had RAI in Mar of 99. Not once since then has my thyroid replacement been right. I am so frustrated. I appear to be extremely sensitive to synthroid. A daily dosage of .075 leaves me hyper and .0625 leaves me hypo. Then staying on at .0625 and adding just one .075 per week was tried. In the end, when she reached the point of 6*.075 and 1* .0625 per week my TSH increased. Go figure. So I am taking .075 of eltroxin for something different. I am sure this imbalance can't be helping my body and i know it isn't helping me emotionally. My anxiety is right up there. And despite 2 different anti depressants taken simultaneously I am spinning down. (Yes I have contacted the doctor and must get off the phone so he can call back.) I feel somewhat as if I have been on a roller coaster for all this time! And so, enough already. If this is it, the best I can expect, then tell me please. Yada yada yada. I will continue on my search for information on Hoffman's syndrome. Is there another name? Thanks again, Kate daisyelaine@... wrote: > It's an erythrocyte sedimentation rate, which is also called a sed rate or a > Westergren (for the method we use). In this test, we fill a narrow tube with > blood to see how quickly the red cells settle in one hour. In inflammatory > conditions and infections, the blood settles quickly and the sed rate is > high. The test is helpful in ruling out and diagnosing connective tissue > disorders, like rheumatoid arthritis. It's generally normal in Graves' > disease. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Hi Kate, The only name I know of for this condition is Hoffman's syndrome. did you go to the www.throidmanager.org/thyroidbook.htm site. Check in the hypoT chapter there. I sympathize with how you feel. I was kept hypo for many years after RAI. Once I started paying attention to what was going on, I realized I had many options besides a token dose of levothyroxine. Don't give up until you're feeling as good as can be. I probably should mention too that fibromyalgia is associated with hypothyroidism caused by RAI. A number of treated patients have it. Several recent studies indicate that approprite thyroid hormone replacement can help with this. Unfortunately, many people are kept hypo. Also, the hyper symptoms you mention can be from associate nutritional deficiencies. B vitamin and magnesium deficiencies can get me feeling hyper. Some of your other meds can be interfering with thyroid hormone absorption. Check that out in the thyroidmanager on line book too. Persistence seems to be the key in regaining health after RAI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 Hi Mona, I never heard of it specifically used for GO, but it does measure inflammation and the congestive eye disorder is an inflammatory process. Good going. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2001 Report Share Posted June 21, 2001 That makes sense, Elaine. It's my understanding that any trauma to the body is a trigger for Fibromyalgia, Lupus, Chronic Fatigue, MS, any of the autoimmune diseases, really. I've heard it several times. I don't know why thyroidism would be any different. Donna http://trak.to/lifewww.reliv.comTake control of your health! Re: GD and Myasthenia gravis Hi Kate,The only name I know of for this condition is Hoffman's syndrome. did you go to the www.throidmanager.org/thyroidbook.htm site. Check in the hypoT chapter there.I sympathize with how you feel. I was kept hypo for many years after RAI. Once I started paying attention to what was going on, I realized I had many options besides a token dose of levothyroxine. Don't give up until you're feeling as good as can be.I probably should mention too that fibromyalgia is associated with hypothyroidism caused by RAI. A number of treated patients have it. Several recent studies indicate that approprite thyroid hormone replacement can help with this. Unfortunately, many people are kept hypo. Also, the hyper symptoms you mention can be from associate nutritional deficiencies. B vitamin and magnesium deficiencies can get me feeling hyper. Some of your other meds can be interfering with thyroid hormone absorption. Check that out in the thyroidmanager on line book too. Persistence seems to be the key in regaining health after RAI. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 Thanks very much for the wonderful reference. I hadn't happened onto that site yet. Have had to cut holidays short because I'm so weak and sleep all the time. Went to clinic today to get blood drawn. I could hardly get my act together to get there. It's frightening. I was checked for fibromyalgia by the same doctor who said once a while ago I couldn't be hyper as I wasn't losing weight I intend to plug my husband into that site before I go back to sleep. Thanks for your consistantly wonderful help and thoughts. Kate daisyelaine@... wrote: > Hi Kate, > The only name I know of for this condition is Hoffman's syndrome. did you go > to the www.throidmanager.org/thyroidbook.htm site. Check in the hypoT > chapter there. > > I sympathize with how you feel. I was kept hypo for many years after RAI. > Once I started paying attention to what was going on, I realized I had many > options besides a token dose of levothyroxine. Don't give up until you're > feeling as good as can be. > I probably should mention too that fibromyalgia is associated with > hypothyroidism caused by RAI. A number of treated patients have it. Several > recent studies indicate that approprite thyroid hormone replacement can help > with this. Unfortunately, many people are kept hypo. > Also, the hyper symptoms you mention can be from associate nutritional > deficiencies. B vitamin and magnesium deficiencies can get me feeling hyper. > Some of your other meds can be interfering with thyroid hormone absorption. > Check that out in the thyroidmanager on line book too. Persistence seems to > be the key in regaining health after RAI. > > > > Quote Link to comment Share on other sites More sharing options...
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