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Patient Stories




The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone!  Would you like to share your own experience with Graves' disease, Hashimoto's thyroiditis, thyroid nodules, or other issues?  E-mail us at info@gdatf.org!

NEW!

"November 2015, I was diagnosed with Graves’ disease.  Before that, I never put that much thought into the enlarged gland in my neck, which I thought was a result from my high metabolism and my vigorous physical activities. I kept telling myself, “I’ve been playing sports since I was 4 years old. I’m fine”. Last year when I noticed a visibly large lump and that my energy levels were low while doing my offseason football training in Atlanta, I made a quick phone call to my mother.  She lovingly demanded all the way from the DMV area [DC/Maryland/Virginia] to stop what I was doing and to go get a full physical. Thank goodness for Urgent Care facilities.

As a former athlete, getting physicals was of the norm to be able to play sports...to this day I still live and breathe football. I’ve sustained injuries along the way that required surgeries, a collapsed lung, torn ACL and Meniscus. The latter, hindering my promising opportunity to play in the NFL.  The post-surgery recovery and leadership adversities going into my senior year of college football proved to be a trying and dark time in my life.

Adversity for most is perceived as a hindrance, however in my life, it has been a constant motivation.  A humble and grateful product of a single mother household that endured some harsh avenues, being a father figure and role model to my little sister, and having a father (a former 12 year NFL veteran and current NFL Coach) choosing not to have a relationship with me...adversities have only made me stronger along the way.

Just as being diagnosed with Graves’ disease, it is a health adversity, and one that I embrace. This season of my life will afford me the opportunity to learn more about the disease, the most common cause of hyperthyroidism.  In turn, I have the amazing opportunity to become a unique advocate in bringing awareness of Graves’ disease not only for my generation, but for all people who have been diagnosed or know someone who has.

I was initially prescribed methimazole to see if my levels would decrease. In almost a year that I've been on the medication and a few ultrasounds along the way, my levels have not decreased. Per my pre-consult with Dr. Shatul L. Parikh of Northwest ENT and Allergy, my surgery for thyroid removal will take place on Thursday, September 29, 2016.

We all endure adversities, no one’s journey is easy.  Graves’ disease is the 5th quarter in my game of life, and all I can do is win." – contributed by Jamal Londry-Jackson​.  Pictured above with his mother Kathryn, aka "Mama Kat".

(via e-mail)


My Diagnosis Story, contributed by Emma, age 17.  Click here to read.
"After I was out of a 5 night stay in the hospital, including a night in an ICU setting, and once I was on my feet again, I was told that I could have died, if I didn't get any treatment when I did. I would either have a stroke or a heart attack from my heart going so fast."
(via e-mail) 


Living with Myasthenia Gravis and Graves Disease, contributed by Judy Sonkin - Click Here to Read
"I don’t know why I have this disease and I never will.  I must not question that, as it won’t bring me to a better place."
(via e-mail) 


Gravely Ill, contributed by Nancy Austin – Click Here to Read
“I am now more assertive with doctors, and no longer see myself as a recipient of healthcare, but rather a partner in my health care.”
(via e-mail)


My Graves’ Story, contributed by Christine Althaus – Click Here to Read
“The next day I received a call from my Dr.’s nurse, and she flat out told me “we think you have Graves’ disease”.  Imagine my shock!  A disease, what are you talking about?  Graves, who names something that?”
(via e-mail)


"Being diagnosed was actually a little bit of a relief after a year of hospital trips and being misdiagnosed as having anxiety. That is, until you google the disease and find a whole bunch of scary information and quickly realize the severity of a chronic illness. I found it very hard to find any blogs, sites, support groups that focused more on the coping, managing, and encouraging rather than a lot of complaining and negativity. After living with Graves for three years, I can see both sides of this very well. It is chronic, it is hard to "manage", and even more hard to explain to others, especially those closest to you, why you are so damn easily irritated. Not "looking" sick but feeling terrible...it's tough. Very. The cardiac problems seem to be the worst for me and week to week is a roller coaster, a long list of other chronic bothersome issues are always with me but I have come to terms with it for the most part (this is me being positive). It could always be worse, I like to say.
Stress is a major trigger and managing that is my new life project. Keep your thoughts positive and your peace close. Be gentle with yourself. Best to us all..."
K.C.T. (via Facebook)


"I was diagnosed last year. Thyroid levels are now in control but eyes are red and hurt. Pressures are normal. Doc says to use drops and ointment. I am going thru the active inflammation phase of graves eye disease. It is a horrible experience!"
T.P.M. (via Facebook)


"I had first symptoms at 27 but not diagnosed until 40.... Because I'm not skinny. Finally they diagnosed me as Parkinsons because tremors were beyond bad. Then a new doctor ran some bloods just for interest. My levels where off the charts, specialist had never seen such high levels. They were amazed I hadn't gone in to Cardiac Arrest.  2 years on levels are still extremely high and can not get heart rate under 120 p/m.  What fun.  My symptoms are tremors and high heart rate, eyes are good but I'm not skinny, wouldn't mind the skinny bit. And sleep is very rare."
P.P. (via Facebook)


"I started having symptoms at 17 and was told by countless doctors that there was nothing wrong with me - a few even told my mom I was faking and to take me to a counselor. Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. It was tough for the first year with levels and symptoms all over the place but I'm stable now unless I get really stressed. It's so nice to read other's stories and know that you are not alone, which is how most of us feel when we go so long being misdiagnosed and then are diagnosed with a disease we've never even heard of."
S.R.S. (via Facebook)

Recent News

Recent Forum Posts

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    May 24, 2017, 2:43 p.m.

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    Kimberly - How long have you been off of the methimazole? I am assuming you are in remission?

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    May 22, 2017, 3:43 p.m.

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