Sharon - 08/06/98 03:38:07
My Email:sschneider@yahoo.com
Where are you from?: Nebraska
How did you find these pages?: health thyroid search
Are you a regular visitor here?: yes
Do you have Graves' Disease or related?: Graves Disease now hypo

Comments:
Looking for information relating to eye changes. My daughter is an optomotrist and has changed my prescription but her reference books don't say much.

Kim Powers - 08/05/98 19:44:47
My Email:kepowers@gte.net
Where are you from?: Calif, Texas, PA, & Ohio
How did you find these pages?: my husband
Are you a regular visitor here?: not yet - 1st time
Do you have Graves' Disease or related?: yes

Comments:
I'm sorry you had to go through all this crap! Isn't amazing what a simple blood test will do for your sanity? I only went through a year and a half of hell before they diagnosed my hyperthyroidism. But during that year and a half, everything fell apar . I went away to college, weighing 92 pounds, I came back at the end of the semester weighing in at 146. I had massive migraine type headaches, that only prescription muscle relaxers helped. Even then I would cry myself to sleep and wake up still cryin 24 hours later. Noise and light did not bother me just movement of any kind (ie, breathing). I got a dream of a summer internship (at IBM) between my freshman and sophmore years of school. However, now I can never work at IBM again or even put it on m resume. Many is the times that summer that I would suddenly snap "awake" and find my car three lanes over, 50 mph over the speed limit and heading toward an overpass support. The doctors kept telling my Mom that it was just normal "college adjustment". My parents had me tested for every known drug in the world. I had all the symptons of a major drug problem. The doctors kept running more and more sophisticated drug screening tests. They were finally able to tell my parents "She hasn't even taken an ntihistamine within the past 30 days." In the fall I returned to college, but ended up dropping out 6 weeks later because I was losing my mind. When I returned home the doctors had me seeing a psychiatrist for split personality disorder (yes, they thoug t - and had convinced me and my mom that I was schizo). New Year's Eve 1987 I couldn't take it anymore. I took 15 prescription muscle relaxers. I didn't want to die, just to sleep for a really long time. Obviously my parents got me to the hospital and I suffered no ill effects. In March 88 I had a tachocardia at work. I was sitting at my desk (I was the receptionist), when suddenly my heart was pounding harder than I have ever felt before or since. My hands were bright red and I had the shakes real ad. My heart rate for 280+ beats per minute - at rest. Guess what?! I had a hyperthyroid. Once I had a name and knew I wasn't losing my mind, things became much better. It took them about 4 months to get me somewhat normal. Unfortunately, by that ti e I was pregnant and unmarried (my son is now 9 1/2 and show no signs of thyroid disease - but we have him tested every two years due to meds I was on while pregnant). But as the Methimazole started to work its magic, my life became a somewhat more "reco nizable" place. My thyroid has gone into remission twice (one of the great side effects of Tapazole/methimazole). Both times it went into remission immediately following a miscarriage. And on another interesting note, both times it has "freaked" out I was on birthcontr l to treat another medical condition. The first time were pills the second time was depoprovera shots. The doctors still don't believe that it is the birth control that causes my thyroid to act up, but when I was given the 1st depo shot, I made the Dr. est my thyroid and it was functioning normally (it had been for 6 years) when I went back for the 2nd shot 3 month later, she again tested it and 'lo and behold it was hyper! Last year I was diagnosed with Graves' Disease. But following a miscarriage in Dec 97, my thyroid function is normal again without meds. (My current Dr. doesn't know what to do with me) Both times my thyroid has freaked out I have gained approx. 50 pounds. Each time it has gone into remission I have lost that weight. Right now I still have about thirty pounds to go but am losing (without trying) about 7 or 8 pounds a week. The Drs don t understand why I keep gaining weight with a hyper thyroid - they keep looking at me like I'm crazy. Of course now that my t-function is normal they just look even more confused as the pounds melt away. It's been 10 years since my 18 months of hell ended. And about 14 years since my thyroid first started acting up. I'm am very grateful for the knowledge I now have that allows me to know I AM NOT INSANE! I just need a little pill (sometimes). Sorry to take up so much of your space, it's nice to know there are other people out there. Thank you for taking the time to share your story with the world. If anybody has any questions or just needs to know someone understands and has been there, plea e email me at kepowers@gte.net

D. Keyes - 08/05/98 18:38:55
My Email:D_Keyes@bc.sympatico.ca
Where are you from?: BC, Canada
How did you find these pages?: searching the web
Are you a regular visitor here?: first time
Do you have Graves' Disease or related?: my daughter does

Comments:
My 11 year old daughter was diagnosed 3 years ago & nothing is helping her. She had an allergic reaction to tapozol & ended up in the hospital for a week. She has been treated with PTU tablets & thyroxine but to no avail. Just today I have been informed t at her T3 & T4 are the worst they have ever been. I am to have her in the hospital in 4 days for the radioactive iodine treatment to kill her thyroid. Sounds pretty radical but I have been told today that we don't have an alternative. Over the last 3 y ars she has grown from a small frail child of 8 to 30lbs over weight and now at age 11 she has size 11 feet and is 5'7" tall. This emotional roller coaster has been a heartache for me as a mother - nevermind the huge emotional and physical toll on my daug ter. I am gathering information today to make sure this is the right solution. I know the frustration of this disease only too well...and its about time more is known about it.

erika urbanski - 08/05/98 14:40:03
My Email:erika urbanski@gte.com
Where are you from?: tucson, AZ
How did you find these pages?: yahoo
Are you a regular visitor here?: first time
Do you have Graves' Disease or related?: yes

Comments:
do you have any information about homeopathic remedies for graves disease that you may have tried yourself? I have had graves disease for about a year but wasn't diagnosed until nearly four months ago. After the highest dosage of tapazole and atenolol f r 3 weeks, the dosage was lowered significantly and I was declared hypo with my next set of T4's. Now I still take a low dosage of tapazole and a low dose of synthroid. I don't like the side effects of any of these drugs and feel so tired all of the tim now. I am a triathlete training to make the olympic team in 2000 and can't even train because of my low energy and loss of appetite. I don't know if I am being yanked around by doctors or not, but I never had any radio-iodine treatment, and just don't eel "right" about the way my treatment has gone. Do I just need to be patient? Or do I need to search for alternative medicine? I am only 24 years old! I want my life back!

Bill Shoulders - 08/05/98 14:08:34
My Email:pju@earthlink.net
Where are you from?: California
How did you find these pages?: Yahoo
Are you a regular visitor here?: no
Do you have Graves' Disease or related?: No
Any new links I should add?: ??

Comments:
I have a friend who has Graves Disease, and I'm trying to find out all I can about the disease.. (ie, what can we expect??, what can be done?, etc). thanks

Jane W. - 08/05/98 03:55:56
Where are you from?: Hinsdale, IL

Comments:
I just wanted to add a few thoughts after reading the guestbook. Patty S asked about itching, I had it terribly, I thought it was allergies. It was like having hives without actually having hives. Also, I went to the Mayo clinic primarily because of the rapid heart rate and extreme, sudden weight loss andTOLD THEM that I thought it was my thyroid, and they did a few blood tests and sent me home telling me that it was probably anxiety! I told them I could take xanax all day long and my heart rate was still high. I was furious!!!! My basic bloodwork was normal. It was an antibody bloodtest that finally showed the Graves. Thank goodness my doctor back home believed in me. I am so angry that it took me so long to find out what this was when I had classic, CLASSIC symptoms for years. Is there anyone out there who feels better after medication, radioactive iodine, or surgery? Has anyone else had EXTREME trouble swallowing.?? I hate eating (although since the Tapazole I can't lose weight for anything)

Jane Wareham - 08/05/98 03:39:29
My Email:not yet
Where are you from?: Hinsdale, IL
How did you find these pages?: under graves disease
Do you have Graves' Disease or related?: yes

Comments:
Similar story, undiagnosed for at least 8 years, my doctor recently said I must have had this since birth!!!!. Can barely swallow, finally off Tapazole, very fatigued. I want more information. Many books don't tell you the whole story. All the little sym toms that are a part of this. Went through many, many doctors before one didn't think it was just anxiety (THAT MY HEART WAS BEATING OVER 120 ALL THE TIME!!!!!!!!) Many friends do not understand. Some have backed away. I know many people with thyroid pro lems, only one with Graves and she was diagnosed immedietly.

A-J Rodgers (Mrs) - 08/04/98 16:16:19
My Email:ajrodgers@uop.com
Where are you from?: England
How did you find these pages?: Searched on "Graves Disease"
Are you a regular visitor here?: No, first time
Do you have Graves' Disease or related?: I have just been diagnosed last week (aged 36)
Any new links I should add?: No its great!

Comments:
I was very scared when I was diagnosed, the doctor phoned me at 08.30am on a Saturday so I knew it was bad news. Since then I have been trying to read everything I can about Graves, so that when I see the specialist (next week - August 13) I have all the nformation I need to ask questions and understand the answers. Thank you for your page, it makes me feel like I am not the only one, I have printed all the items and will take it home and read it tonight, especially the bits about what treatment you were prescribed and what happened. Wish me luck! A-J Rodgers England

Carrie Hazen - 08/04/98 15:07:58
Where are you from?: Ohio
How did you find these pages?: Surfing
Are you a regular visitor here?: Yes
Do you have Graves' Disease or related?: Yes

Comments:
Hi I'm Carrie Hazen and I'm 27 years old. I first was diagnosised with Hoshimoto's disease about a year and half ago. I took different doses of Synthroid from .2 - .5 over this time. I finally went to a specialist and he took me off of the medicine bec use they thought I had Grave's Disease. Needless to say I do. I have lost some weight, but since I was first diagnosised with Hoshimoto's disease I had originally gained about 30 pounds. Now I'm back down to a decent weight. My appetite is out of contr l. I crave sweets and different foods a lot. I am going to do the radioactive iodine in two weeks because my goiter has grown tremedously over the past year. I'm a little scared about the procedure since I'm very young and do plan on having children. Th doctor recommends this treatment so I'm trusting he knows what is best for me. I laugh when I read a lot of these letters because now I know that there are many people feeling the same way I do. I'm not going crazy! I wish everyone luck in getting well! Carrie

Tam Kitchens - 08/04/98 13:12:17
My Email:tam_kitchens@hotmail.com
Where are you from?: Atlanta, Ga
How did you find these pages?: Yahoo search
Are you a regular visitor here?: No

Comments:
I just got a Thyroid test yesterday and don't yet know the results. Dear Lady, your symptoms are much like mine. I was dianosed with Fibromyalga about 11 years ago due to pain around my joints. I can't remember if I was tested for Thyroid disorder or not. Now I have tingling, and even numbness in my hands and feet (tested for diabetes, but blood sugar was ok)I get panic attacks too. I will let you know where I go from here. Thank you for your page.