Written by
Lynn from Toronto

"I was diagnosed with Graves Disease in October of 1995. I had not been feeling real well for a few months (actually longer but did not connect the symptoms) and then one morning I got up and ready for work and was very very agitated. I went upstairs not knowing what was wrong and said to my SO , "I JUST CANNOT DEAL WITH THIS ANYMORE!!!!" I did not know what THIS was but I was so agitated and so tired all at the same time that I just peaked!

He told me to get back into bed, he was going to call in for me and I was going to the Doctor that day. Well that day changed my life as I knew it forever.

I told him how I was feeling and he said, "You are going for tests right away, you look terrible and like you are going to keel over any minute! "He sent me for EEG, EKG, Blood work and Ultrasound. Then a few days later I went for a thyroid uptake test and BINGO...I was diagnosed with the worst case of Graves my Endo had ever seen.

I immediately went on Tapazole and Inderal for about 6 months. I was off work for 5 weeks and that was a frustrating experience in itself. My insurance company for work decided I should only get benefits for 1 week because the Graves should be cured in 1 week!!!! I had to get a letter from my doctor that cost me $200.00 of money I didn't have to get what was coming to me. The only thing good about the letter was that it got me my benefits. The Doctor's receptionist was not going to give me the letter until I paid for it in full....No money for 5 weeks and she wanted me to come up with $200.00 for a letter!!!!. Anyway I yelled at her and within 5 minutes she had called me back and said the Doctor had told her to release the letter immediately. I guess I yelled loud enough..hehehe.

After all that was straightened out I settled in for a very long 6 months of frustration, swollen feet and legs, not sleeping, emotional roller coaster rides, crying jags and falling asleep at the drop of a hat during the day. Finally I started to feel a little better except my eyes were up to their old tricks of getting very very red and gritty. They were so bad I had people ask me what drugs I was doing or if I had bad allergies! I had the red itchy eyes on and off for 2 years before I was diagnosed and thought it was an allergy to the diesel fumes I put up with at work. I work in the Service Department of Western Star Trucks in Toronto and that was the only thing I could think of that was different about my surroundings. Needless to say that was not the case except I kept asking my Endo what was going on with my eyes and he finally got ticked with me calling him all the time and said the red eyes had nothing to do with GD!!

I gave up calling him and thought he was right.....WRONG! I went for a routine checkup with him and my eyes just happened to be in full blown technicolour and I walked into his office and he just about jumped out of his chair!

"What is wrong with your eyes?" he said. I, being a smart alec said "Oh nothing, just a little red" He decided then and there that I was going to an Ophthalmologist ! My, we certainly changed our tune when it smacks you in the face! I walked into the Ophthalmologist's office and the first words out of his mouth were "You have Graves Disease?"

I nodded my head and started to well up with tears...Here was someone who believed my eyes were really not right. He gave me a cream to use at night and some artificial tears and I have not (knock on wood) had anymore problems with red and itchy eyes. Sometimes they get teary but mostly when I am tired or have stared at the computer too long.

The next phase was my Endo telling me I was in complete remission. I went from having the worst case he had ever seen to being in full remission in 6 months! I really did not feel that good but I let him wean me off all the medication over 6 weeks. Needless to say I felt really bad by the time I was to go for blood test 2 weeks before my appointment. I went for blood tests and he called me to come in early and told me what I knew already, "All the levels are up again, you should have RAI."

I went home to mull over in my mind what this all meant. I was a little uncomfortable with destroying an organ that had a purpose in my body but I could not live with the symptoms I was dealing with on a day to day basis.

I decided to go ahead with RAI, so in November I went to the hospital and took the Atomic Cocktail. I had a couple of bad weeks but I am finally starting to feel better. Just a few small problems like swollen feet and legs, not sleeping real well but that will pass as well (so I am told anyway). Thank God I had such an understanding SO or I never could have done it. I cannot understand how he put up with alot of the things I dished out over that time. He read everything I did and read the BB as well, we discussed what I was going through and not once did he get upset with me. That has meant everything to me and I would like to publicly thank him for that right now, Mark you have been my Rock, Thank You. Also Thank You to all the friends on the BB that have been there for me.

I will add to this story as time goes on and any changes happen but for now I will just go on being a GD Warrior."

"Updates as of November 17, 1997

Well here I am 1 year later and feeling not "too" ? bad.

I called the Endo in August about my swollen feet and hands and he told me it had nothing to do with G.D. I was at my wits end and he refused to listen to me. I had an appointment with him so I wore a pair of heels to work in the morning and by the time I went in to see him I was swollen like a balloon. He asked me if I had any problems to discuss and I said, "Oh I just wish I could get rid of the swollen feet, and I pulled up my pantleg. Well!!! I thought he would fall off his chair, He asked me how long that had been going on and I asked if he meant when was the first time I noticed it or when was the first time I had called him and he told me it had nothing to do with GD!!!! Needless to say I got some water pills real quick!!

I get some bouts where I get extremely tired inside, and so lethargic that I can't get out of my own way. My hair has slowed down in the falling out department but still does a little. The itchy skin is driving me crazy again, I am still on water pills to combat the swollen legs and hands. I tried to go off them but in 2 days I was up like a balloon again.

I have now developed gout and major carpal tunnel syndrome. Some days I cannot even walk for the pain. Again I am told it has nothing to do with GD.

I really don't know if they are connected but it seems sort of strange that everything I read points to auto-immune disease.....Hmmmmmmmm......Maybe I am over reacting but it sure makes sense to me. The biggest problem is the weight gain. I have gained about 40 lbs since last November. I feel like a cow!!! I have no self confidence about my appearance anymore, I do not like my SO looking at me naked anymore, Nothing fits me anymore....It is soooooo depressing sometimes. I am trying to lose it but to no avail. I asked my Endo and he said I am just eating more, I tried to tell him I am NOT but he will not listen. Why don't they listen to what OUR bodies are saying ...Who knows better than we do what is going on with our bodies???? We are not "Text Book" cases... PLEASE listen!!!!!!! I get so frustrated when people tell me how I am feeling... I KNOW how I am feeling just Listen!!!!!

Anyway I see the ENDO in February so We will check back then to update again.

Thanks for letting me vent"

Lynn from Toronto