My Story With Grave's Disease - Personal Stories - Living with Graves Disease

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My Story With Grave's Disease


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#1 JulieW

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Posted 05 December 2011 - 02:26 PM

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Hello all; happy to have found this site, and be able to "talk" to others who have been where I am. I was diagnosed with Graves in April 2010; opted to have RAI in May, 2010. In Dec 2010, started to notice a "bubble" on my right sclera. Went to regular opthalmologist who thought it must be allergies, then was sent back to my endo because it became apparrent that was not the case. Was referred to a Oculo-facial Plastic Surgeon, who taught me more about Graves in one visit than I had learned in 10 months with my endo. Started on Prednisone trial in Feb 2011; and it did work with the larger doses. But as I titrated down, the bulging became more apparent. At my last visit, my bulging measured at 25 bilaterally, which makes me less cycloptic, and is ok with me - I would rather them be "even". But surgery IS on the horizon; I've been putting it off for almost a year because we don't have insurance, and thoughout the process of diagnosing and treating this to this point, we have had to spend alot of our money, and while fighting the disease, I haven't always been able to work. Our family has had to make a lot of sacrifices due to this disease, and I have found a prevailing attitude of "Ok, so take a pill, and it will be fine". So many people don't realize all the other stuff that goes along with it. Once my thyroid didn't function anymore, I found that the disease started to "travel". I've had several instances of problems there has been no other explanation for such as diverticulitis, neuropathy, muscle spasms, etc. I have also been diagnosed as a Type 2 diabetic due to the Prednisone use. Diet has helped tremendously - I've lost 40 lbs since May. Still looking for helpful hints in trying to reduce the redness and swelling around my eyes. I live with the knowledge that blindness is a possibility if I don't have the surgery, but am so scared to have it - there are no guarrantees that my eyes will point in the same direction when it's done, and then additional corrective surgery will be necessary, as well as lid repairs, etc. I am really interested in learning what others have experienced in their journey, and what to really expect in the recovery of orbital decompression, if and when I choose to do it.

Thanks so much for letting me share.

Julie W.


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#2 Tiffany

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Posted 14 December 2011 - 02:20 AM

Julie, i am sorry to hear your suffering with this disease. I was just diagnosed today but had already thought i had it. It's nice to be able to hear someone else's story. I just turned 32 and have been sick since i was 29. My doctor kept telling me i am perfectly fine and young and to exercise more. The last 3 months of my life have been unbearable i literally felt as if i was dying. I could barely get out of bed, my muscles ache so bad & are very weak, i am always hot & can not stand heat , fevers up to 102.9, my eyes hurt so bad & bulging out of my face,shaking, headaches, my heart was beating so fast it was scarey. I had awful vison migraines & nose bleeds daily. I slept up to 18 hrs per day which effected my career. I went to my doctor broke down in tears and starting yelling & begging for help .... i had lost it. I have no clue why she wouldn't help in the past but now i guess realized i am not playing games with my health anymore. I had put on 90 pounds suddenly over 1 year and that was 3 years ago and have managed to lose 25 pounds which was really hard. 1 week later blood results came back and i have an overactive thyroid. My heart rate was over 200 ! I was put on Tera-Atenolol to bring the heart rate & blood pressure down & Tapazole until i see the Endocrinologist. I`ve had my thyroid up take test and i am suppose to be having the iodine treatment in 2 weeks. My question is have you just kept getting worse after treatment before and have you already had the radioactive iodine treatment as well. Did you lose the weight easily with proper diet as this is really impacting my health with the added weight. I have noticed a difference from the pills .... did u notice anything before.

Thanks so much for your post, it means a lot to hear from others that are suffering as well

Tiffany

#3 Christine

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Posted 14 December 2011 - 10:14 AM

Hi Tiffany -

Please follow this link to the discussion board portion of this site, and I will leave a response for you:


http://www.livingwit...oid-discussion/


Julie W - Please do the same, and maybe someone here might have some suggestions regarding your eye problems.

The "personal stories" section doesn't get much traffic. It's just where people write out their experiences with Graves'.

Best Wishes,
Chris

#4 Tiffany

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Posted 14 December 2011 - 11:43 AM

Thanks Christine =)





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