Bonnie - 07/27/98 19:16:05
My Email:bdomin@kns.com
Where are you from?: PA
How did you find these pages?: search for Graves
Are you a regular visitor here?: once before
Do you have Graves' Disease or related?: Graves Disease

Comments:
Hi Sue, I go for my RAI this Friday (7-31), and I'm very nervous. Does anyone know what kind of reactions you get to RAI. Also, how long do you have to avoid being around people after RAI? My doctor told me 2 to 5 days depending on the hospitals policy, but so e bimbo at the hospital told me not to worry, just go to work. Now I don't know what to think. I will undoubtedly find out from the doctors when I go for my Iodine Scan on Wednesday and Thursday, but I'm sort of confused right now. I have a crazy theory I'd like to prove out - I have false teeth, and started using SeaBond to hold the bottoms in about 1 year before I was diagnosed with Graves. Seabond is made from Kelp which can contain large quantities of Iodine in it's natural sta e. IS IT POSSIBLE that adding extra iodine into my system everyday (I also am a big seafood eater) could have thrown everything out of wack enough to cause Graves? My doctor and several books I've read all say that they don't know what causes it.

shannon - 07/27/98 05:23:50
My Email:sstigger@bellsouth.net
Where are you from?: Florida
How did you find these pages?: Surfing the net
Are you a regular visitor here?: yes
Do you have Graves' Disease or related?: yes, graves

Comments:
I have been suffering with this disease for about 4 years. I was always very pretty growing up but didn't think so. I was always thin, but thought I was fat even at 102 lbs. Now, with bulging eyes, moon face from prednisone and weighing in at about 160 lbs on my 5'3" frame, I am having a very hard time accepting my appearance. For the past year I have been battling with Graves eye disease and welcome e-mail from anyone who can give info on this. My opthamologist says he is running out of things to do or me and that frightens me. I have to small children, I would like to see them grow up, literally. I don't think my thyroid levels will ever be right, I'm either too high or too low. The past year or so the Dr's have kept me a little low, they say tha is better. But I don't think it is. I think that is causing more eye problems. They say your hormone level doesn't affect the eye problems. But I had this disease for 3 yrs and then the overdosed me on synthroid and Hello Graves Eye Disease. Then my Dr. cut my synthroid in half and crashed me. It has really been downhill since then. Sometimes I get so tired of fighting this disease. The fear of the unkown, the inability to cope, is terrible. I love my kids but most days I seem to do nothing but ye l at them. I am really coming to my wits end. But then the next day, I feel like I can fight this stupid disease. Any one else ever feel this way? Most days I just feel so alone. Does this disease ever go into remission or is the rest of my life goin to be miserable? These are just a few questions I can't seem to get answered. I feel for anyone who has to live with this disease. It isn't easy on the patient or the family. I have gotten a lot of info from this web site though. Thank you for all y ur help. s

IamSTORM - 07/27/98 04:22:04
My Email:IamSTORM@aol.com
Where are you from?: Northern California
How did you find these pages?: My mate did a search
Are you a regular visitor here?: I may become one
Do you have Graves' Disease or related?: yes, I have Grave's

Comments:
I was diagnosed with hyperthyroidism, and put on the lowest dose of a heart medication "Atenolol", a beta blocker, for my slight high blood pressure, and random rapid heart beat in May 1998. It is now July 26, 1998, and as of last week, I learned from my internist my hyperthyroid condition is in the form of Grave's disease. Not until I read your story did I understand that I may have had Grave's disease for many years, and that my mother may also have it. It explains why so many times I felt like a hypochondriac, and why I have gone through so many doctors who could find no hing wrong. It wasn't until I went to my internist this May with swollen feet that she suspected a possible thyroid condition. I was unprepared for the seriousness of this sudden hyperthyroid condition, and have spurned my internist's insistent pleas that I go through an RAI and irrevocably destroy any chance I have of actually healing myself. Nor do I wish to betray myself by w llingly volunteering to destory a part of my body after experiencing symptoms directly related to hyperthyroidism for only 2 months. Apparently it is a commonly held belief (which translates in doctorese to a "fact") that this thyroid disease switch, once flipped on, can never be flipped off naturally. I am bucking the system. I am vegan, which means I am the strictest of vegetarians and I hold firmly the faith that it is inherently backwards to think one is healing oneself by being a partner to the destruction of a vital part of one's body. Modern western thinking medicine still grasps the symbol of the intertwined snake of mind, body, and spiritual healing as its scepter, but in modern times it has betrayed that tri-fold holistic way of thinking, treating only the body, discrediting the min 's involvement, never acknowledging the spirit, and often treating only the symptoms of what little they are willing to acknowledge in the physical realm. Any possible environmental causes aren't connected at all. They are, in this warrior's view, the real witch doctors, gods of hypocrity with the scalpel and the pill as their weapons of death, and we are all just lambs for the slaughter, to be fed through the multi-conglomerate money hungry meat grinder called the medical industry. Certainly there have been wonderful discoveries, cures, and surgical procedures in our time. They are wonderful -- and they can only go so far. They are, by nature, designed to treat only the body. But how many times in our lives are we forced to realiz that we are not our bodies? The holistic approach never forgot that. I have been seeing 2 real healers who are not icons of the western "cut & paste" way of thinking. One is a holistic practicioner of 25 years, who has successfully reversed thyroid imbalances in every one of his patients with a thyroid disorder who has st ck it out with him and not given in to their fears created by the western doom and gloom doctors. He's done this without any permanent destruction to the body, mind and spirit of his patients, using no invasive procedures, and without any lifetime drug dependencies when its done. The other healer is an acupuncturist, who also happens to be an MD. She also has successfully treated thyroid disease in her patients, the last one just 4 months ago. So far, as of 2 months into treatment with both of these wonderful, supportive, positive, insightful people who address my pain on the emotional, mental, and spiritual level as well as the physical, I have experienced the following, according to my wester thinking internist: 1. My feet are no longer swollen. They are normal. 2. My energy level is steady, my state of mind positive 3. My pulse is within normal range, not rapid 4. My blood pressure is normal, not high 5. I am no longer dehydrated I think it is imperative that everyone think for themselves, and never blindly follow what any western practitioner says -- simply because that's what they do -- they practice... And because there are so many more options out there. Yes, it costs money. Yes, you have to realize you are worth it. But, like Val, I decided to reclaim my warrior, and never give up! I plan to keep you posted on my progress in the hope that others will seek a healing alternative to the proverbial butcher's knife. With Faith in the Universe and in All of Us, --STORM

John - 07/25/98 03:03:25
My Email:jrfran6681@aol.com
Where are you from?: Boston, MA
How did you find these pages?: searching for patient info on hyperthyroidism
Are you a regular visitor here?: I plan to be
Do you have Graves' Disease or related?: hyperthyroidism

Comments:
I am a 43 year old man. About two years ago, I had a repeated light-headed feeling, and frequent anxiety attacks( the anxiety occurred only when driving).I saw my primary care Dr., who sent me to a nuerolgist, and an ENT , and had an MRI done of my brain, The ENT prescribed a steroid, a decongestant, and an antihistamene in addition, he recommened surgery to remove polyps in nasal cavities and remove my elongated uvula. I had the surgery and the symptoms dissappeared until earlier this year, the lightheade feeling and the anxiety attacks came back with a vengence. I saw my primary care DR. who prescribed the same medicine as the ENT did 2 years ago bu also adding an antibiotic. The anxiety attacks became severe but after two weeks they went away, but the light headed feeling remained. About two months ago I started having severe shaking in my hands I delayed seeing a doctor as long as possible, but when my ankles swell to an enormous size I forced myself to go. I was sent from the DR's office to the emergency room with atrial Fibb and congestive heart failure, the initial blood tests showed anemia which was a puzzle for the doctors, they thought that there was internal bleeding, test on that were negative. On th third day of my hospital stay, there was a diagnosis of hyperthyroidism. I now find it hard to believe that the earlier symptoms were not picked up as being a thyroid disorder. As I now research the symptoms, I find that I have had this condition for years but usually the symptoms were mild. I opted for the Tapoazole treatmentas opposed to the Radiated Iodine route, I am curious to see if anybody has comments related to that th rapy. I wish you all well, I look forward to hearing from others regarding this condition, thanks for your time!!!!!

Jeff - 07/24/98 12:24:57
My Email:zybertek@echelon.ca
Where are you from?: Ottawa Ontario
How did you find these pages?: Search for Graves Disease
Are you a regular visitor here?: A couple of visits
Do you have Graves' Disease or related?: Yes
Any new links I should add?: www.endocrineweb.com/thyroid.html

Comments:
My symptoms started with severe tremors in my hands and legs. I was always out of breath and the would work up a sweat just getting out of a chair. My resting heart rate was about 90 bpm and I lost about 15 pounds. I had a sore throat for about 3 weeks bu there was no lump, only a general swelling. My family Dr caught it on the first visit. My T4 level was way up. I was also his first male patient. My iodine uptake is at 35% and now I'm on propythouracil 300 mg/day and 50 mg of atenol to slow my heart dow . But I've found that after 3 weeks of meds, I get some days where the symptoms seem to come back. I've never been an emotional person, but lately I can just sit and cry for no reason. I've been off work for 6 weeks now and I can't even think of going back. I'm still sweating alot and I get tired quickly. I'm also getting these chest pains and I've sta ted a cough and mucous in my throat. I'm supposed to take the PPT for 6 months and then wait and see if it comes back. If it does, then it's Radioactive Iodine treatment. If anyone has any comments on this treatment, I'd like to hear about it. The medical web sites all say that it's safe and no side effects. Are there any men out there who have this? I know it's more prominent in women and that is what all the info is dire ted at.

Sharon Diehl - 07/23/98 21:41:23
My Email:diehl@usgs.gov
Where are you from?: Boulder, Colorado
How did you find these pages?: Yahoo search on thyroid
Are you a regular visitor here?: No

Comments:
I'm 47 years old, a geologist with the U.S. Geological Survey. This past year I gained about 20 pounds, felt depressed, couldn't lose weight, had a fast heart rate, and felt tired all the time. I was recently diagnosed with thyroid problems after my yea ly physical, which included a blood test. My husband, who had been "disgusted" with my weight gain and giving me a lot of grief about self control when it came to eating, is now ready to "forgive" me because it's a medical problem. However, I'm not read to forgive him for his hateful attitude.

Kerry Vigue - 07/22/98 17:08:06
My Email:lbelmont@webtv.net
Where are you from?: B.C. Canada
How did you find these pages?: Web search of Graves
Are you a regular visitor here?: No, just found it today
Do you have Graves' Disease or related?: Yes
Any new links I should add?: Not that I can think of

Comments:
Hi there! I am 29yrs old and was diagnosed with Graves Disease by accident almost 2 years ago. I was seeing my Gynecologist as I wanted to have another child(have 1 son 9yrs old). He kept looking at my eyes like he had never seen eyes before!! He sent me to an eye specialist, and here I am. I guess it's not a suprise as my sister was diagnosed 4 yrs ago. I felt so bad because I thought she was just a whiner and I couldn't stand listening to her!! I have apologized profusely for not taking her seriously. Right now I am still trying to "get regulated". My hair is still falling out after 2 treatments of radio-iodine. It sucks!! I still don't feel normal-whatever that is! I almost lost my boyfriend and my son thinks I'm NUTS! Hope all will get better soon. Anyway, it sure helped reading your story and some of the other ones in your guestbook. Thanks!!!

Christina-Marie Banus - 07/22/98 12:59:03
My Email:TEAMSTR773@FASR.NET
Where are you from?: Macungie, PA.
How did you find these pages?: Graves Disease
Are you a regular visitor here?: will be
Do you have Graves' Disease or related?: yes

Comments:
Good Morning, I am 39 years old 5ft.9 1/2in. I have lifted weights since high school,am (was very fit approx 14% body fat)now I have have Graves. August 1997 my weight dropped to 114 lbs. from 123 lbs. My Dr. perscribed PTU, by January 1998 my weight jumped to 118 lbs my perscription ran out by January 1998, by April 1998 I inflated to 142 lbs.My weight has never been above 126 lbs. (I never gained the full "Freshman 10" one of my roommates gained 20 !!!) I have been on the Adkins diet since April, my weight is holdin at 137 lbs. In early April I started to have RAGE attacks...I am naturally a very active slightly hyper person. These attacks were like nothing I have ever felt, I scared my parents and friends. I could not sleep, I would leap out of bed and pace around the house till early AM ...I didn't want to kill myself...but I didn't care if I died. I would work out for hours walk for miles, up and down the stairs. I also hated what I saw in the mirror , I would pound on my body until it was black and blue. I now have trouble organizing my thoughts as you can read. Could be the Zolof..I have stopped taking PTU. I'm tired of D s...let me know if anyone else has had these problems.... Christina-Marie Banus 249 Willow Street Macungie, PA. 18062 610-967-1699

Monique A. Frey-Jackson - 07/21/98 23:20:25
Where are you from?: org. LA, CA, now Seattle, WA
How did you find these pages?: Doing research on Thyroids, I've been diagnosed with it, after loosing 2 children.
Are you a regular visitor here?: No
Do you have Graves' Disease or related?: I have Thyroids, Hyperthyroids, I have not been tsted for Graves Disease yet.

Comments:
Hi! Im 31 years old, and I just read your story...it sounds alot like me...it was almost like reading a story on myself, but someone else writing it....I'm scared..I've lost 2 children in 7 months through miscarriage and that is what caused my doctors to un blod test to understand more clearly what it is that is going on with me. I have all the symptoms, I'm gaining weight fst to me...I knew I could not have gained weight that fast in such a short period of the my pregnancy. I am going to get tested for Graves Disease...I have all the symptoms, the clearest one is my eyesight, my emotions, my sickness, and my strength....I am married, but he is ot educated about this just like I was not until now...my Dad will do research on this such as I have, becasue he did on my miscarriages...I'm scared, and I'm confused...i do not have an email address right now, I am not working, becasue of the lost of thes children and my sickness, it has been 4 months, but you know what I don't have the energy or the want to go on with worki g...that is not like me, I love people, I am a Coordinator profssionally, and I look to have fun and be with all my friends, and I don't feel like that person anymore...I have seen a Chiropractor in the past, and he told me things about my neck, I've been sleeping on a Therapeutic pillow, and I just am tryingt o put all of this into perspective...i feel like a lonely scared little girl. My family is in LA, CA...I have my husband, but I just don't think that he gets it....I have bills piling up, and car no es to pay, insurance, house note, etc...I am afraid that I have lost te strength and energy that gets me through......HELP..... Please write me at home: Monique A. Frey-Jackson 10222 64th Ave. S. Seattle, WA 98178. I do not have an email address...I am at the library doing research on this....Thanks for developing your page it helped me....it will continue to help me....Bye!

Jami Anderson - 07/21/98 20:53:57
My Email:jamicliff@webtv.net
Where are you from?: Tacoma, WA
How did you find these pages?: Surfing for thyroid problems
Are you a regular visitor here?: yes
Do you have Graves' Disease or related?: yes

Comments:
I have been on a physical, emotional rollarcoaster. Wasrecently diagnosed with graves and given i-131. I dont like problems and blurred eyesight. My tsh was below o.1 and is now 0.3. Im taking propraninol and vasotec. I have high blood pressure and suffer from panic attacks. Will things ever settle down? I dont seem to enjoy life very much these days.Does anyone suffer from lightheadedness and dizziness with their visual problems? Thanx. Jami