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New Survey on Graves' Disease - Please Participate!



Posted 4 years, 9 months ago (11 comments)

In 1992, the Graves' Disease & Thyroid Foundation (back then called the National Graves' Disease Foundation) participated in a landmark survey regarding emotional and behavioral complaints and Graves' disease. The results of the survey study, which were published in 1996 in the Journal of Neuropsychiatry and Clinical Neurosciences, increased the awareness of the medical community to the neuropsychiatric symptomatology associated with Graves’ disease. The GDATF is honored to participate in a follow-up to this survey to help assess the current state of our Graves' community. Please click this link to share your experiences -- and to help future patients receive a timely diagnosis and treatment!  No personally identifying information is asked and all responses are completely confidential.

Comments

  • Laura 4 years, 8 months ago

    Where can I get a copy of the survey. I want to show it to my Doctor. I have so many of the issues,but no one seems to know why. The survey gave me a lot of good starting points for conversations with my Doctor.

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  • GDATF 4 years, 8 months ago

    Hello - The survey is currently only available online, but you are welcome to share the link with your doctor. (The one catch is that you can only take the survey a single time from one particular computer.)

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  • Teri Odegaard 4 years, 7 months ago

    I participated in your survey a few moments ago. I do hope my responses assist in diagnosing more symptoms of GD. I have several symptoms that so far doctors/specialist have no idea why. There is not even a medical reason for them; at least according ENT, ENDO, and neurologist can explain at this time. Just sayin I took advantage of a good moment to use words professionally, it doesn't always happen.

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    • Joan 4 years, 2 months ago

      I have had Graves' disease twice. First illness was triggered off when my best friend died of cancer and I was with her to the end. I was very ill with Graves' disease a week later. The second time I got it was 10 years later when my wonderful Father died. Although he was old the shock of him going was so traumatic within 3 months I was very, and I repeat very ill with it again. So I do think shock plays a big part in this disease. Consequently I have had my thyroid destroyed by radiation. However, this does not cure you as I have to alternate my dosage often 50mg, 75mg, and 100. St present I am not well as I think being 6 months on 50mg has been too low. the Doctors only want to test you every six months so I have to suffer for a couple of months before the next test. doctors do get irritated if you go back too early, and I can assure you I never trouble a Dr. unless it is imperative. maybe I should start doing so. it's an awful disease as you can never get the dosage quite right.

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  • GB 4 years, 5 months ago

    Can one take the survey for their spouse? I have been with her since before initial onset of GD.

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    • GDATF 4 years ago

      Hello - The researchers specifically asked for patient responses, but if you would like to help your spouse with the computer part of it with her answering the questions, that should be no problem.

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  • Suzan Zelick 4 years, 5 months ago

    I just participated in you survey. I do hope that it help in getting the word out to doctors to take their patients seriously. No one should have to endure the hell I have in the past 6 years. It was only after I tried to end my life, that I was finally diagnosed with Graves Disease yesterday. And that isn't even confirmed yet. I will see a specialist in one week. I do have a hyper thyroid that is confirmed after 9 years of getting the run around. I so want to do anything I can to make sure that no one else has to suffer the way I did. And if there is anything I can do to help spread the word, please let me know.

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  • SUSIE ROSENFELD 4 years, 4 months ago

    I would like to take this survey.

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  • SUSIE ROSENFELD 4 years, 4 months ago

    I am waiting to take this survey.

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  • Joan Nance 3 years, 10 months ago

    I was happy to participate in your survey. I want to do all I can to help others who are battling Graves'. I was lucky when it came to getting diagnosed and treated, but not so lucky with the severe TED.

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  • Sheila Anderson 3 years, 9 months ago

    I was fortunate to be a certified optician for over 20 years. My symptoms started with a left eyelid drooping. After having one of my optometrists check it, I was referred to an Endocrinologist. After lab work I was diagnosed with TED. After two orbital decompressions, nine muscle surgeries and just six weeks ago I started reconstructive surgery, I am starting to feel I look human again. My Dr told me I probably had thyroid disease for quite a few years but was never checked for it. Usually symptoms are written off as stress, menopause, or whatever. I have had total thyroidectomy and RAI. I have always fluctuated on my levels and meds need adjusting every few months. I go from hypo to hyper. I feel exhausted, have brain fog, am bitchy, and have now developed rheumatoid arthritis.This disease has finally made me realize that I have to be a fighter. I have to make myself get out of bed everyday and try to be normal. I actually enjoy visits to my shrink so I can gripe about how rotten I feel. I retired and moved South to enjoy warmer weather with no snow and am very fortunate to have some very good doctors here. I have compassion for anyone who has to go thru the hell of this disease and if you are one of the fortunate ones with a mild case, consider yourself truly blessed.

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