Guest Name Deb
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From: Northern Illinois
Comments: Thanks for sharing your story and giving others the opportunity to share, too. I was diagnosed 1 year ago, and I am still trying to find the right dosage of Synthroid. After reading your updates, I'm going to increase my knowledge about the T4 and T3 medications. I believe I have a great team of doctors to work with, but I need to become a more active part of that team. I've noticed many recent news stories on Thyroid diseases, so perhaps more doctors will start to routinely test TSH levels when some of the symptoms are present. After talking to several friends, I'm amazed at how common Grave's disease is in my small town of 1800.
Sign Time: April 29 2000 at 17:15:35
Guest Name Debby
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From: Pennsylvania
Comments: I was diagnosed with Graves Disease in February of 1999. I had my thyroid radiated and it completely destroyed it. It took exactly one year to get my levels back into normal range but now they are fluctuating. My tsh is dropping 80 points every few weeks. It is now 1.09 and my T4 is 16.3. I'm afraid that I'm heading back into a "hyper" state again but my endocrinologist doesn't seem to be concerned. My dosage of Synthroid is 150, so many people believe that it's too much. I have also started to have problems with my eyes. One month ago I woke up with fluid filled sacs under my eyes, my eyelids were swollen and I had double vision. I have had it every morning since then, it goes away during the day and returns at night. Is that part of Grave's? I have read stories about people having eye surgery but my doctor's haven't discussed that with me as being an option. Can someone tell me about that? I was told that once my thyroid was radiated the progression of Grave's would slow down. I feel worse now than before I was treated and I can't seem to get my doctors to listen to me. Even though they now know that I have Graves, and I was also diagnosed with MS, they are still blaming everything on stress and trying to push tranquilizers. I'm frustrated and don't know where to turn.
Sign Time: April 26 2000 at 12:58:17
Guest Name Cindy Weldon
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From: Dallas,Tx
Comments: Hi< I was finally diagnosed with hyperthyroid 2 days ago. I am realizing that I am not an emotional basketcase needed to rent a room at the local looney bin. I hope I will be able to come back soon and tell more but at this time, I want to share what happened to me and how I found out. I went to the emergency room last monday night thinking I was having a stroke, I couln't breath, my face was as red as an apple, sweating, nauseated and my head felt like it was splitting open. The staff asked alot of questions, took blood, chest x-rays and did an EKG. I was told to follow up with an internal medicine Doctor with a referal. They didn't know what was wrong but said that it may be my thyroid. I went to see this doctor 2 days later (wednesday) and he came in the room with a pad for presciptions and proceded to tell me about another patient of his that was put on a habit-forming drug for anxiety-attacks. He said he would give me one that wasn't habit forming!!! This was before he even listened to me or my symptoms.. He had diagnoced me before he saw me.. I had to make him run the other blood test for the thyroid... a nurse called me Friday morning to tell me I had hyperthyroid results. She said he would set me up for a thyroid scan next week and I didn't hear back from them yet as to the time or date for that to be done. Today is Easter Sunday and I had to cut the day short with family because I was too tired to stay.. I need some sound advice as to where to go for a Doctor I can trust and answers to what is wrong. Thank you for this site.. I know now that I am not alone. Cindy
Sign Time: April 23 2000 at 19:12:26
Guest Name Kim
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From: Greenville sc
Comments: I was diagnosed with graves disease at 21 years old.It took them 3 years to get me halfway straightened out and I ended up with cancer of the thyroid.I hope now things will better although I believe you are never cured.
Sign Time: April 19 2000 at 22:55:43
Guest Name Georg
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From: Berlin, Germany
Comments: Hey there, Iam looking for all the information I can get and it is very helpful to have people all over the world trying to cope with this disease. Since March I know about my situation and in the beginning I was simply "glad" to know what was going on. I was sweating all day and had pulse rate of more than 100 per minute. I felt like a dead person being still alive. Take care of yourselves. Georg
Sign Time: April 19 2000 at 15:03:52
Guest Name AMANDA JACOBS-BRYANT
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From: TEXAS
Comments: Thanks for the website.I am 35. I was actually diagnosed last Jan(1999) but felt that I did not have time to deal with it. The problem being that my husband had terminal lung cancer. They also had diagnosed me as being Hypo. I questioned them about it because my T3 and T4 were hi and my TSH was low. I now know that that is normal for Graves'. I went back to the GP in Jan with chest pains. Diagnosis was hyperthyroidism. I had the ultasound done that showed a nodule. Then the thyroid uptake scan and they diagnosed it as Graves'. My T3 and T4 are triple what they should be and I'm angry because they will not let me go back to work. I have the trembles, palpitations,hair loss,etc... They can't figure out though why I'm heavy. 5'1/2" tall and weigh 168. I have lost about 35 lbs since my husband died though. I do not want to have the 131(radiation) done. Does anyone have any sugestions? I am in the process of changing doctors. The first endrocrinoligist charged me 400.00 to walk through his door after waiting three weeks to get an appt. and then I spent most of the appt with a training GP. Go figure I hope this dr is better, I do not like doctors very much. Thanks for the website. Ever thought about starting a Graves' chat room?
Sign Time: April 19 2000 at 02:35:21
Guest Name Dorothy Raney
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From: Austin,TX
Comments: I've been battle this disease for 5 yrs. I'm still have problem keeping my thyroid regulated. I was dx at age 23. I will soon be 29 and I'm very tried of this disease.
Sign Time: April 18 2000 at 22:03:13
Guest Name Melanie
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Comments: I have to say that this was a great page. I am 21 and was diagnosed with Grave's Disease about 4 years ago. Everything is fine. But nice to see others went through the same thing.
Sign Time: April 18 2000 at 03:22:39
Guest Name Melissa Lineberry
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Comments: Hello There, Found the Site, thought I'd add my story. I've been Diabetic 15 yrs, insulin, 13yrs. Family history of Diabetes, others in family also on insulin. And thyroid. I let my health get away from me, deppression,overeating,other emotional difficulties. Let myself get to 370lbs. Anyway, with psyc.,counseling,and meds. I got better, I have now lost 183 lbs. Use less than 1/3 insulin and meds than 3 yrs ago. I've been real active again, camp, hike, and dance at Pow Wows. Even made Princess at the one I produced March 31-April 1. I'd Been having trouble with shortness of breath, thought allergies. April 5, had the worst attack of unable to catch breath. Went to E.R. after Nitro-Gly. tubes and ventalator tubes, and stacking breathing breathing treatments got my breath back. Next day EKG's EEg's, heart sonagrams, and blood work. Diagnoses Graves Disease. Sent to U.V.A. Hosp. Great medical teams. Was concerned about radioactive Iodine Ablation also. Turned out I was over worried, sure it scared me to know that I had to be dressed,discharged,and walking out of door. But, there wasn't but about a teaspoon of it, no taste, added water to container three times and swallowed it. Walked out to car, to go home. The only nausea was the ride home, three hours. Be sure to not eat anything 2 hours before or after ablation, some soda crakers ok. Light, not spicy when you do eat. I believe it helped me to keep diet soda on my stomach. So, don't let the rules about flushing,sharing utinsels,mass transport scare you overly. I did fine, blood sugar back under control,strength returning. The key is not to overlyconcern yourself, keep an upbeat attitude, don't feel sorry for yourself. If you're a spriritual person, keep the Faith. Please feel free to e-mail me, we'll share concerns, info. and prayers. Best Wishes, Mel.
Sign Time: April 17 2000 at 18:42:05
Guest Name Etta Lawlor
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From: west virginia
Comments: We just found out that our daugher has Graves disease, didn't know where to look and found your page and was glad that i could learn mor about the disease, so now i will know what my daugher is talking now I just want to thank you for the information god love you for it.
Sign Time: April 15 2000 at 13:19:02
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