lonelydee31

I was diagnosed with graves disease back in january 09.I am scared and i keep asking myself why.They say they think it is heredited and i wish i knew becasue my mom and dad both died when i was young. My sister has cerbal palsey maybe she got it from our parents like me, no one knows, we dont even know what killed our mother. My heart rate has been as high as 185bpm and i've had the shakes and nervousness since I was born they blamed it on the use of drugs from my parents know im thinking differently. My husband had gotten laid off in april we lost our insurance and i am out of meds and i cant get medicaid in the state of ga because we have no children. about a month and a half ago his job called him back so hopefully we will receive insurance soon. We've been married 10yrs and always tried for children but to no avail, do you think that when my graves disease is under control we will be able to conceive? I wish everyone good luck in recovering from a disease that theres no answer for, I hope we can help eachother out on here because i need it..

Marienella

Hello, I am 20 years old, and i have been suffering with weight loss, stomach problems etc.. for 2 years now so i have been doing some research. I have many of the symptoms that i have read in these postings. I had my TSH level tested and it appeared to be normal but i have read that this can be normal even if the free T3 and T4 levels are not. I am 5'3 and I have lost 20 pounds and cannot gain it back no matter how hard i try.. i lost my appetite, i get hot flashed, hair loss, tremendous anxiety and stress. Also my mom was diagnosed with this disease immediately after she gave birth to me. I am emotionally a wreck, i just want to go back to the life i had. however my doctor refuses to treat me further for this. Does anyone have any suggestions as to what i should say to my doctor or where i may go elsewhere or even what other testing i should ask for. Thanks and good luck to all of you

Marienella

Hello, I am 20 years old, and i have been suffering with weight loss, stomach problems etc.. for 2 years now so i have been doing some research. I have many of the symptoms that i have read in these postings. I had my TSH level tested and it appeared to be normal but i have read that this can be normal even if the free T3 and T4 levels are not. I am 5'3 and I have lost 20 pounds and cannot gain it back no matter how hard i try.. i lost my appetite, i get hot flashed, hair loss, tremendous anxiety and stress. Also my mom was diagnosed with this disease immediately after she gave birth to me. I am emotionally a wreck, i just want to go back to the life i had. however my doctor refuses to treat me further for this. Does anyone have any suggestions as to what i should say to my doctor or where i may go elsewhere or even what other testing i should ask for.

Rexxi

I was diagnosed with graves disease - Rushed into RAI without being informed of any other treatment available. It is the worst thing that has ever happened to me. I was robbed out of making a choice because I was never given any options. I was put on ATD's and my levels were brought down to range in one month. The endo scared me to death saying that I could no longer take the meds and I would go into cardiac arrest if I didn't have RAI. 6 weeks after diagnosis, I was given RAI. Two months later I develop TED and have had i.v. steroids, orbital radiation, and now immunosuppresants. I have hypothyroidism now and am fat and ugly. I used to be full of life, happy, loving, social, etc. I now feel like I'm the walking dead; a human sloth. My life is over. This is forever. I despise my life now.

sugar8198

HAO13 I wouldn't be too worried about the pregnant thing I had twins in May last year and my Endo thinks Ive had Graves for at least a few years but started showing severe symptoms just this last March he thinks me having babies made my symptoms show up otherwise he thinks they may not have shown up for a while yet. Im a fairly healthy person and I am only 28 but I think you will be fine. I was on Depo for 10 years and was off it for less then a month when I found out I was pregnant so if Graves affects that and I might have had this disorder for a few years and not known then How did I manage to get pregnant. I think if your meant to have them you will just try not to think about it too much.

sugar8198

Hi my name is Katherine I do agree with HAO13 that this site is very good if your your unfililiar with graves. I just had my thyroid taken out at the end of May and I just started getting headaches around my eyes like I did 3 weeks before my surgury so this disorder is no fun at times. But hey I have 2 legs 2 arms and Im alive so no big deal right:)

hao13

Hello everyone! Wow, this site has the best info. I have found so far! I was diagnosed with Graves' in 2005. My particular case had the eye thing with it and my GP referred me to my current endo. She was very aggressive in getting my levels under control and she told me that since my case had the eye problem w/ it, the best treatment would be to have my thyroid removed. She told me that the RAI treatment (which was the most common treatment) could make the eye symptoms worse, so in 2006 I had my thyroid removed. The surgery was no biggie at all. It was the only surgery I have ever had, so I was a little worried, but it went very smoothly. I am currently taking Levothyroxine daily and will have to take meds forever I guess, but I feel a million times better. Before, my symptoms were shaking hands, trouble sleeping, dry and irritated eyes, my eyes were also starting to appear bigger (I was so embarrassed. I could really tell in pics of myself.), hot flashes, constipation or diarhea depending on the day, and just exausted and stressed all the time, not to mention absolutely no sex drive whatsoever. After my surgery, most of these symptoms disappeared. I occasionally have issues w/constipation/diarhea, but that is really it. My husband and I have been trying to get pregnant for a little over a year w/no luck. I didn't really think about my Graves' effecting this, but I am going to my OB/GYN Monday to discuss options for getting pregnant. I am 32 and I have been tracking my days using a fertility monitor and ovulation predictor kits for the last 2 months. When we decided to start trying, I quit smoking and I started eating better and exercising 4-5 days a week. I have lost 23lbs. and I feel so much stronger and healthier. I have tons more energy, but my hopes were that with all this lifestyle change and getting healthy that getting pregnant would be a piece of cake. Not so much. Anyone have any specific advice for dealing with Graves' and getting pregnant? Hope this helps someone out there.

antispy

:0 thank you thank you thank you :):):)

Ibelieve92307

I was diagnosed with Graves' Disease 2 Days ago. My Endocrinologist said I'm one of the worst he's ever seen with the levels of T3, T4, TSI, and my antibodies fighting back off the charts unable to be read. For example one antibody was supposed to be under 15 and it was over 1000. I am only 16 and a singer. He gave me options of medication or surgery. As a singer I chose medicine. I have apparently had the disease since my freshmen year of high school and I am now a junior. With a history of thyroid disease in my family and the death of my father at the age of 14 I believe the combo maybe have caused it. I will be on the medicine for the next 2-3 years until my body actually destroys my thyroid and then I will take replacement hormone for the rest of my life. With only 1.5 days on my medicine so far so good haha. I have a long road ahead of me, but I think positive and will continue to live my life the way I always do except a little less exhausted. :)

plant_krissy

i have had graves disease for about 3 years now (that i have known) and been on medication since, fell pregnant and had my baby boy in that time-during pregnancy my thyroid condition improved, my baby now 5 months old is fine with no thyroid condition (so far) and i am a unhealthy 48kgs ,hair thinning and feel emotional and stressed again , maybe this year they will finnally get around to some long term treatmnt, sick of being on medication, at thirty years old and 4 kids i cant help but wonder about the long term effects it will have on my health in my old age. I am interested in meeting people with graves disease

chele66

Just found out! I only found out about 6 weeks ago about having graves disease. I went to the doctor because I was so sick I thought that surely I was dying. He did a blood test straight away and thankfully diagnosed it. I have been on medication for 6 weeks but have cut it in half of my own accord. But I'm feeling so much stronger that I think I can make my own decisions. I was at the endocrinologist yesterday who wants to muddle along and try things - but she didnt like it when I told her I was not going to be a gineau pig and suffer while she experimented. I have demanded the thyroid be surgically removed which is now in the pipeline. My eyes are swollen but I am coping with it. My ankles and lower legs are hideous. But I do believe will get better in time. I guess what I'm saying is listen to your own body and loudly voice your opinions on what treatment you want. I have only just started to learn about this disease today really so am glad to discover that my gut feelings were right and I'm glad I have stood by that.

flutterbuy

hello . just found this sight. just wanted to tell all of you out there . i have had graves disease for 25 years. it hasnt all been bad or great but i see most of you are new at this game .... the best advice i can tell you is be your own dr. i have learned so much that i dont take crap from dr.s that dont know what there doing... im still learning. and i havent gave up . not yet anyway .. so hang in there and if i can help anyone with any thing i would be glad to i have lots of medical web sights ....and i never stop looking for new answers

channelr49376

Hello Everyone! :-) I just want to tell everyone to stay positive and strong during your dis-ease with Graves. I was diagnosed with Graves about 4 years ago. I was 55 years young at the time. I thought the symptoms were from Menopause, but as I grew more tired and lathargic I also started getting very rapid heart beats and some chest pain. Thinking I was having a heart attack I went to my doctors for a cardiogram and I was fine, but she suspected something was going on not yet diagnosed. With a simple blood test she found that my thyryoid levels were sky high! I went to the hospital for thyroid tests and was officially diagnosed with Graves Disease. The last four years have been hell to say the least. I stopped eating even though I had hyperthyroidism, I gained weight...lots of it. I had chronic diarrhea and frequent urination (every hour running to the bathroom). The night sweats were horrible!! I wanted to die from that alone. I started having problems with my eyes with blurred vision and a sense of 'drifting' ( I did not get bulging eyes, I got drooping eye lids )and my legs hurt all the time, I had trouble walking even short distances. I had trouble sleeping and even breathing. Although I thought I had the best endocrinologist in the state of CT (he wrote a book etc) he turned out to be the 'grim reaper'. I almost died because of his ego. He did not believe in surgery and he had me running for blood tests every month, seeing him every month and paying his bill every month. I was over medicated, told to 'hang in there' and by the time 3 years had passed me by with constant suffering my immune system crashed, my edrinal glands crashed and the tissues in my eyes were damaged. I couldn't walk from my front door to my car, I couldn't even hold a glass of water in my hand. I almost died. I prayed for a miracle and I got one. A friend of mine who is a surgical nurse at Yale New Haven Hospital knew the chief of Endo at Yale and got me to see her. She operated to take out my thryoid almost immediately. It has now been two years since the surgery and I am on 25o mlg or synthroid for life, but the good news, the very best news is that I am energetically 80% better. I am really close to having my old life back. The only down fall is that my eye tissues are damaged, I am dianosed with Thyroid Opthomology which may or may not get better and also the tissues and muscles in my legs were damaged and I have severe walking problems. However I am going for water therapy for that and I have an amazing eye doctor. What I am getting at here my friends is that if you are diagnosed with Graves Disease either zap your thryoid with the radiation pill immediately and 'kill it' or have your thyroid removed surgically A.S.A.P. There is NO CURE FOR GRAVES DISEASE and the only way to get your health back and feel better is to destroy the thyroid. You don't want to end up like me with eye and leg problems. And as far as a good doctor goes pick the one with the best 'people' skills NOT the one with the most PHD's and ego to go with it. You are in charge of saving your own life and with positivity NOT negativity you will get thru this battle and win the war! Even though I still have much to go thru I still feel lucky that I have more energy and can do the everyday things in life that I couldn't do for so long. I'm even going to Disneyworld this Fall, something that I thought could never happen. So hang in there my Grave Friends.....fight the fight and attack everything with a sense of humor. Laughter is really the BEST MEDICINE!! LOVE AND LIGHT MARTI

Trinity0707

Hello Everyone!! First of all,I must admit that I am relieved that I am not the only person with my newly diagnosed Graves Disease. I found out that I have a family history of thyroid disorder. I did not have a problem until I had 2 invetro cycles last year. I took many medications for this, and I often wonder if this had something to do with my disorder. With invetro, they totally minipulate your body. So, I did not get pregnant, and two weeks ago (before my next invetro cycle), I was told that I had a thyroid level of .004. My heart races, my muscles are sore, and my joints ache at night. Not sure if I am loosing weight. Hopefully I caught it in the early stages. My endo put me on PTU's just in case I want to get pregnant in the next year. I am 40+, so it is now or never for me. I can do everything that I have always done, and still love what I do for a living. I find that I just have to slow down so that I am not out of breath. Any one with Graves Disease needs to see a specialist without a doubt. I often wonder if I should go ahead with a pregnancy, knowing that I might pass this thing on to my offspring.

chick43

Hi-- Just found this site and all these story's are my story. I think the first problem with this disease is that most Dr's won't listen to you. I went thru 3 gp's and an endo before I went to a woman--nurse practioner who immediately put me on meds to lower my thyroid levels--after 2 1/2 years. She then sent me to another endo who appeared to be horrified that I had been allowed to suffer with this for so long. Within 6 weeks he had performed all the tests and I chose to have radio-active iodine treatment, which for me turned out to be no problem, no side affects, felt better within a few days. It will be a year in May since I had the procedure done and they are still adjusting my meds about every 3 months to get me to the correct level but my life has totally turned around. I think most doctors are willing to treat the symptoms but not the disease as I too was put on toporol for my racing heart and blood pressure, but the meds made me feel even worse. You have to keep searching until you find someone that will listen to you and is willing to treat the disease and not just the symptoms.