Raegan Frazier - 02/18/98 04:23:24
My Email:raegan@expert.cc.purdue.edu
Where are you from?: Cape Cod, Massachusetts
How did you find these pages?: Yahoo!!
Are you a regular visitor here?: will be now
Do you have Graves' Disease or related?: yes, I have Grave's
Any new links I should add?: sorry, don't know of any

Comments:
Hello, I'm so excited that I just stumbled across this page as I'm procastinating from doing my work. I am a sophomore at Purdue University and I have just been told I have Grave's right after Christmas. Currently I'm very confused as to what this disease really is. I too have had problems with doctors not telling me what is really happening. I feel like I have no other options, but to take the radioactive iodine. As I'm in the beginning stages of treatment, I too believed that once I take the iodine that it will be all over. Reading the words of the guests before me I now realize I'm gonna have a long battle ahead of me. If anyone has any information of any sorts or would just like to talk about anything PLEASE email me! It would so very helpful!

Myra - 02/17/98 02:22:55
My Email:MNIM777385
Where are you from?: PICKENS ,S.C.
How did you find these pages?: JUST SEARCHING
Are you a regular visitor here?: NO
Do you have Graves' Disease or related?: YES
Any new links I should add?: NO

Comments:
I have never been really sick before in my life.When I was told I had Graves Disease I was very scared because I did'nt understand anything about the disease. It's been 18 months and my medicine is still not correct. I wonder if I will ever feel normal again.

Ken Hickerson - 02/15/98 00:50:38
My Email:donhick@ultranet.ca
Where are you from?: Vancouver Canada
How did you find these pages?: Yahoo
Are you a regular visitor here?: I will be
Do you have Graves' Disease or related?: no-my mom does
Any new links I should add?: no

Comments:
First of all I really enjoyed your page - it has been very helpful. My Mother has just been diagnosed with Graves disease. She is not into the electronic age so I am looking for any and all info on the disease. (yes that is an invitation for e-mail on the subject) Since finding this page and sponging the information I have come to many hypothisis as to my mother's condition(s) and will ask her for permission to post her story as she sees it. thank you once again Ken

Vicki Tankersley - 02/14/98 18:52:39
My Email:vicki.tankersley@reed.edu
Where are you from?: Portland, OR
How did you find these pages?: pure dumb luck
Are you a regular visitor here?: I will be now
Do you have Graves' Disease or related?: I have Graves' Disease
Any new links I should add?: nope, you're doing great

Comments:
When I first stumbled across your web page the other night, I didn't get the chance to really read your articles until I got home, and I'll be darned if I didn't spend hours trying to find this site again! Briefly, I am 43 years old and have been told that I have had undiagnosed Graves' Disease for many yrs. After they ablated my Thyroid on Dec 4, 1996, I figured my problems were finally over... HAH! Now it's over one year later and they still can't get my Synthroid dose right.... I feel hypothyroid as all get out. I go for a 2nd opinion in about 2 wks. Anyway, thanks very much for sharing with us; I was kindof feeling all alone out here. I get tired of these doctors just say 'oh, it's just your thyroid...it's no big deal and really easy to treat'. Yeah, right....sheesh. Your take care, and Yes! I would love to write a book about this, too. We should collaborate. Yours truly, Vicki Tankersley

Lilian Chang - 02/14/98 03:58:47
My Email:lchang5362@hotmail.com
Where are you from?: Malaysia
How did you find these pages?: yahoo
Are you a regular visitor here?: 1st time
Do you have Graves' Disease or related?: my sister, hyperthyrodism

Comments:


Aileen Fletcher - 02/13/98 22:14:29
My URL: http://www.bev.net/community/NRAC/visart/afletcher/afletcher.html
My Email:nrfleta@nr.cc.va.us
Where are you from?: D.C.
How did you find these pages?: surfing
Are you a regular visitor here?: no
Do you have Graves' Disease or related?: yes

Comments:
I have been able to control Graves disease so far with ptu, the bitter-tasting antithryoid pill. I have to be careful to get checkups often. It is important to be as informed about the disease as possible and to find a doctor that you can work with. Aileen Fletcher

Cinder Destefano - 02/12/98 22:09:34
My Email:gargoil@cyberhighway.net
Where are you from?: Sheridan, Wyoming
How did you find these pages?: search
Are you a regular visitor here?: no
Do you have Graves' Disease or related?: Yes - Graves

Comments:
I was diagnosed with Graves in January of 1997. I'm pretty sure I've had it most of my life. I took Thyroid suppresion medications for six months to no avail and finally took radioactive iodine. It took six months after the radioactive therapy for my T3 & T4 levels to reach a normal range. My doctors made me feel like after the treatment and after my levlels were regulated, I would be fine. Well - I'm not. I still have spells where I feel very hyperthyroid, i.e. sweaty, irritable, anxious with heart palpitations, night sweats - you name it. Now my Doctor just sends me in for a blood test which always comes out fine but I still feel lousy. I was watching Good Morning America today (2-12-98) and Kelly Griffy was on there talking about a Foundation for Graves that she has helped to establish. She also mentioned that once you have Graves Disease, it's something you have to live with all of your life. I'm really angry at my doctors for giving me a false snese of security about this all being over with someday. I don't know where to turn now for the myriad of symptons that still plague me. Anyway, I never did catch how to contact Kelly Griffy or the Graves Disease Foundation. Do you know?

Ronni Gonzales - 02/12/98 17:52:25
My Email:att13uc@cei.net
Where are you from?: Sherwood, AR
How did you find these pages?: Yahoo search
Are you a regular visitor here?: I will be now
Do you have Graves' Disease or related?: gd

Comments:
I was dx'd with GD-hyper 6 years ago. My eyes were huge (funny, I received so many compliments on how beautiful my eyes were), I had a goiter and could barely write my name, for shaking so badly. I am now 27 and take Synthroid daily. I am so glad to hear of other battles with this terrible disease. It is comforting to know that others know how I feel. I had RAI instead of surgery. This is definitely a heriditary disease. My mom had it. My paternal grandmother is Hypo as is my father. I am a single mom of a wonderful 4 yr old boy. Everyday I am scared that I will have passed this onto him and he will have to suffer as we have. I have felt quite fine for awhile, but lately am feeling like I did 6 years ago. The night sweats and shaking in my hands are about to drive me over the edge. I am on Prozac to help with the depression. I would appreciate any feed back. We suffers need to stick together and support one another. God Bless

Elizabeth Lebruto - 02/09/98 01:27:10
My Email:eal@ufl.edu
Where are you from?: Orlando, Florida
How did you find these pages?: Yahoo! Search engine
Are you a regular visitor here?: no, this is my first time.
Do you have Graves' Disease or related?: Yes, I have Graves'

Comments:
I am an eighteen year old freshman at the University of Florida in Gainesville, Fl. About a year ago, I was diagnosed with Graves'. I have always been a very active person, in academics and athletics. All through high school I was involved in a number of activites, from National Honor Society to Beta Club and the Varsity soccer team for four years. I have played soccer since I was six year's old, and the sport was very important to me. I finished high school in the top five per cent of my class, a 4.3 GPA and 21 credits for college. I am a Florida Academic Scholar, receiving a scholarship that covered more than three fourths of my tuition. At the end of my junior year, I began to change, physically and mentally. Over the summer, I lost quite a bit of weight although I would eat five or six times a day. I couldn't sit still for more than five minutes and was constantly feeling jittery and nervous. I didn't notice these changes at all, because I was so busy. I was working two jobs, an Olympic volunteer for the soccer teams that were staying in central Florida for the 1996 Olympics and I was working at a hotel in downtown Orlando. I had crazy hours, and now, when I look back on it, I am sure that this stress I experienced helped lead to the manifestation of this disease. I had never even heard of the disease, and when my grandparents visited me from Boston my grandfather was the one who noticed the symptoms--at this time, my eyes had grown very swollen and puffy. It was he who told my family that this disease runs in the family. I had my tests done, and lo and behold discovered Graves' disease. My first visit to the endocrinologist led me to a state of despair. He told me that the first step was to kill the thyroid gland, and we opted for the radioactive treatment. Imagine going to a high school of 4500 kids and explaining to your teacher why you couldn't sit near people or hug them because you were radioactive!! It was an experience in itself. After that, I began to experience symptoms of hypothyroidism, and the dreaded thing of any teenage girl--weight gain. I was suddenly exhausted all the time, not very hungry, and I gained about twenty pounds. Now< I was never a very tiny girl, but I was slim. About five six and muscular from soccer, I found I couldn't move very quickly anymore and the extra pounds were terribly unflattering. I didn't have a date for a while, and my boyfriend and I were no longer seeing each other. This was very hard for me to deal with. My parents were very supportive though, and I kept a positive attitude while I waited for my levels to go down enough so I could start the medication. I am currently taking levoxyl and it is almost time for my annual check up in March. I realized that this could have been a lot worse, and I am feeling much like my old self. The only problems left over from the disease are my eyes and a few extra pounds. My eyes still bear the bulging look of the disease, but I am considering surgery to have them fixed. I still cry over pictures from last years' prom, when I am thin and my brown eyes look normal. I am only eighteen, but I am glad that the disease was able to be detected as early as it was. Currently, I am enjoying life at UF. I have joined a sorority and plan to major in accounting or journalism. thanks for letting me share my story.

PAUL E. KOTTKE - 02/08/98 14:00:59
My Email:pek@msn.com
Where are you from?: Burnsville, Minnesota
How did you find these pages?: See Comments dated 5 Dec. 1997
Are you a regular visitor here?: Yes
Do you have Graves' Disease or related?: Yes

Comments:
UPDATE! UPDATE! UPDATE! (See My Story of 5 December 1997) Hello To Everyone Again, This is just an update to my story from 5 December 1997 and I guess that the battle with this disease will never end until we are in heaven. As I stated previously, I tried to see if this disease had gone into remission since I quit taking PTU in April 1997. Well, it did not and I had to start PTU again in October 1997 and start to think of the alternatives, ( RAI to Surgery , because I knew that I could not stay on PTU forever. I decided to have surgery, ( January 16,1998 ), on my thyroid because I wanted to get this over with fast and most of all to see if I could become regulated alot faster if I needed synthroid. The surgeon left four percent of my thyroid and of course all of the para-thyroid glands. The para-thyroid glands were not damaged in the surgery and I thank The Lord for that. I contracted a slight case of pneumonia while in the hospital but I was able to fend it off okay. I went back to work after one week and started to feel much better after taking some medication for the pneumonia but I was illiterate and did not finish all of the antibiotics I was prescibed. After two weeks out of the hospital and working to catch up on all of my work, the dormant pneumonia attacked me but this time it hit me and really knocked me down. As I write this update, I'm still battling pneumonia and hope to have it completely finished with by the end of this week. I only regret that my wife now has come down with it! I'll do my best to Nurse her back to health with Christ's help, as she has me. I am only taking synthroid once a week when my body feels it needs it. I am scheduled to go into the clinic and have my blood checked every three weeks only to see if I need to become more dependent on synthroid. I hope and pray that the four percent of the thyroid which was left will be enough for my body to function. The aspect of taking synthroid though for the rest of my life does not worry me. I just wanted to update this, (MY HORROR STORY!), and to say that Christ has been very good to me through all of this. I know He can carry us all through our personal battles! Blessings to all of you for a much healthier and prosperous new year! Thankyou for letting me share my story. Remember, that WE ALL can always LEAN ON HIM!