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TED Survey

Posted 8 years, 10 months ago (2 comments)

Have you received a new diagnosis of Thyroid Eye Disease within the last 12 months?  Please click here to complete a short, anonymous survey designed to help improve the future standard of care for TED patients.

The Amsterdam Declaration was signed by 87 international professional and patient organizations in 2009-2010 with the goal of helping patients with Thyroid Eye Disease receive a more timely diagnosis and referral to specialist care, support for smoking cessation, and proper treatment.

The goal of this survey is to help the Amsterdam Declaration Steering Committee determine progress on its stated objectives.

Eligible survey participants are those patients who have received a new diagnosis of Thyroid Eye Disease (also called Graves’ Eye Disease, Graves’ Ophthalmopathy, or Graves’ Orbitopathy) within the last 12 months.

Stay tuned for an update on the survey results!


  • Maria Henry 8 years, 6 months ago

    I was diagnosed with Graves Disease about 1.5 yrs ago. I have been on Methimazole meds since then & put on 30 lbs since but my thyroids still not stabilized. Now, one of my eyes are bulging out causing me to have blurred/double vision that i am not able to drive or go anywhere. Its been really hard since im used to driving all the time, especially for my work. Now im not working. My husband & family dont understand but its been a real bothersome for me. My sister is my other support but she lives too far from me. I have had to rely on others to drive me to my doctor apts so my husband wont have to take time off from work. I just need someone that understands what im going through. So many videos & information on the internet but i need like a support group of some sort.

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  • GDATF 8 years, 6 months ago

    Hello - I'm sorry to hear that you are dealing with TED *and* still working to get your thyroid levels stabilized. We have a handful of local support groups around the country; you can check out the locations here: http://gdatf.org/groups/ If we don't currently have a group in your area, you might also be interested in visiting our online support group: http://gdatf.org/forum/1/ Wishing you all the best.

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