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EndocrineWeb Community Advice

Graves' disease

From: Allenlm - 1 year 21 weeks ago

Hi! My name is Laura and I was recently diagnosed with Graves Disease. I'm usually a very active, fit, healthy 46 yr old, who has never struggled with her weight. I caught a bad virus in Feb. and this is when all of my symptoms began. I feel like my life changed drastically from this point on, when my heart palpitations, extreme sweating, anxiety, and many others, brought me back to the dr. I thought it was maybe the start of menopause, now it wish this is what it truly was! After all of my blood work confirmed Graves' disease with my endocrinologist, he immediately put me on tapazole and wanted to do the radioactive iodine because my levels were so bad. Because of many different events coming up, I wasn't able to schedule this until June. Although many of my symptoms feel better right now, I have gained 11 lbs in about 4 weeks since beginning this medicine. I haven't changed a thing with my diet, and am still eating a mostly clean, high protein diet. I exercise daily but am now beyond frustrated at what is happening in my body. I've read some other blogs about people's experiences and it was so bleak and filled with peoples reports of gaining 50-60 plus lbs and never returning to themselves, that I now feel more miserable than before. Is there hope for people with this disease? What experiences have others had with the radioactive iodine treatment? Is weight gain always going to be futile? Has anyone opted for a natural treatment that has been successful? Does this disease ever just go away? I don't want to do something permanent to my body if there's a chance of recovering. What kinds of dies would anyone recommend to help manage the weight gain...am I the only one out there that did not get the weight loss symptom? Thank you so much for listening...I'm feeling very alone in this as I have not yet met anyone else who has this disease.

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There is a really excellent closed facebook page of the Butterfly Nation Project where you can post and have exchanges with almost 4400 people with Graves. It's called Graves Disease what everyone should know. I have learned so much from this group. You just search for it and ask for membership. Good luck.

Barbara

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So sorry to hear you have this too. Please please please ask questions of your endocrinologist. I've had one so bad I quit going to him because the only thing he wanted to do was immediately jump to RAI. I've since found a really great and informative endo. You can take Methamazole safely for a few years before making that choice.....you need to take your meds as close to the same times every day, or time you take them. I'm on 20mg of Methamazole twice daily...I take it at 9Am and 9Pm....I've also tried the ignore it and it will go away cause I feel great method....which put me in the hospital ICU for five days with an arythmic heart beat....so yes, you really are sick....I am too....and no matter how awesome we feel and look...yes, it IS serious.....so I am in no way saying not to get treated, I am saying that my first endo gave me no information and tried to rush me into the treatment that HE thought was best....but there is a possibility that this can correct itself if you can slow it down long enough...its slim, granted, but I'm willing to give my body as long as I can before I just start killing organs....and if I'm wrong, then my poor fully functioning thyroid gland will unfortunately go the way of my tonsils and become the second victim of my malfunctioning immune system......and yes, the meds suck!!! They make me tired, they make me depressed, they suck all the time....still better than the blood thinner shots in the stomache...I'll be here to see my first grand baby next spring, if I do get fat again...it will STILL be better than a pace maker for a healthy heart...I will not be making my mother and children bury me before I'm 50.... And you are definitely NOT alone Laura. This is unfortunately a disease that most people can not see. It isn't like you appear I'll. you don't run a fever or vomit. You look really healthy most of the time. No one can see the panic attacks (if you have them...I get "evil cars"). Mostly we don't sweat enough to be really obviously wrong. No one gets the heat intolerance, cause we are too busy being "ok" to let it stop us. And no one expects that your heart keeps you awake all night beating too hard and loud..... I hope things go well for you. Do your research, ask every question you have for your doctor. I'm not one and your situation may me different. But please get as knowledgeable about this as you can and YOU determine what is right for you. It is, and always will be, your body and your decision.

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