Graves’ disease, which affects approximately 1 in 10,000 children in the United States, is the most common type of hyperthyroidism. Graves' disease is an autoimmune disorder that causes hyperthyroidism and is the most common cause of hyperthyroidism in the U.S. It is a matter of luck.”. For some, the course of the disease is very predictable; however, for some there are ups and downs even when the child follows the treatment plan. Graves’ disease was first identified by Irish physician Robert Graves about 150 years ago. Fortunately, I didnt get the bulging you sometimes see with Graves, but I had blurred vision, a gritty feel in my eyes and frequent eye infections.My new endo and his team of course offered me the usual three choices of treatment: medication, Radioactive Iodine (RAI) and surgery. Graves’ disease is an immune system disorder of the thyroid gland in the throat. Now I will need block replacement therapy (which is complicated in itself) and I might have to get off of PTUwhich I cant live without. Im still on PTU and my thyroid levels are up and down. Wendy Williams is taking some time off from her popular daytime talk show to focus on her health. I had literally reached the end of my rope, and desperately needed this surgery to improve the quality of my life, lengthen my life and possibly save it! Im finally stabilized and at a point where I feel pretty good or lets say I have found my new norm. Then he began misbehaving, which wasn’t like him. I remember being a child/teenager and watching action/horror movies watching people get their throats slashed and thinking this is the worst way to die, and nobody will ever be able to place a sharp object near my neck. As Kade’s thyroid hormone production returned to normal, so did his gentle personality and (mostly) good behavior. There is light and life at the end of the tunnel, and I hope you find my positive story uplifting. Not "looking" sick but feeling terrible...it's tough. Onset of Graves’ disease is much more common during adolescence, although the number of children under 10 years at the time of diagnosis has increased over the last decade. Graves' … That’s when I know his Graves’ disease is under control, when my sweet boy with his heart of gold is back.”, 3401 Civic Center Blvd. And he started barely being able to make it to the bathroom, even though he was a kid who never had accidents. I completed the uptake scan (RAI 123) with the nuclear medicine doctor. The thought of RAI just didnt sit well with me this early on in the condition. Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. "(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”. Feel free to contact me with any questions.My story begins back in the Winter of 2011 at the age of 36. November 2015, I was diagnosed with Graves’   disease. He then recommended a Total Thyroidectomy surgery with one of the best endocrine surgeons in the state. I must not question that, as it won’t bring me to a better place. Graves’ disease affects females more often than males by a ratio of 5-10 to 1. I was diagnosed with Hyperthyroidism and Graves' Disease. 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. Graves’ disease occurs when a child’s immune system develops antibodies that attach to the thyroid cells, causing them to produce too much thyroid hormone. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. Both are very difficult to live with. The story of course gets better!After just a couple of weeks of taking the Methimazole (60 MG), my poor body rebelled and broke down by developing severe allergic reaction of extreme joint pain in just about every joint in my body. There are certain risk factors that may increase the chance that you will have it, such as: The medication hasn’t zapped Kade’s energy. The more I researched, the more I linked Graves Disease … In fact, if I did it again, I might be looking at doses in the amount given to thyroid cancer patients. His mother, Kate, says she thought, “He’s 4 and running all over the place. “He tells me, ‘I try so hard to be a good boy at school.’ He really wants to please his teacher, so I understand.”. The right side of my thyroid was like three times the size of the left side. That’s a huge relief for the family. Although Kade is doing well, it has been more than three years since his diagnosis, and his thyroid stimulating antibody levels are still elevated. since being thyroid less, and my weight still seems to fluctuate a bit. We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. Hope that all is well with you. All I could think of was trying to survive without extreme bodily pain.Around this time, I got into a disagreement with my endo as they were pushing RAI constantly, and I just didnt feel ready for it. What fun. “It’s busy around here, but a lot of fun,” Kate says. Kade is a bit of an anomaly. 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. Finally they diagnosed me as Parkinsons because tremors were beyond bad. Would you like to share your own experience with Graves' disease, Hashimoto's thyroiditis, thyroid nodules, or other issues? I know your post is almost 5 years old now but I wonder if things changed for... Support the GDATF and become a member today! Graves' Disease and Pregnancy Planning - 2010, A Short History of Graves' Disease Reporting in North American Newspapers, Radioiodine Treatment for Thyroid Disease, Diagnosis and Treatment of Subclinical Hypothyroidism, Playing on One String - Day to Day Life With Graves'. Greater Than Graves' 2012 Coast-to-Coast Ride! “He doesn’t think about it or talk about it. So, I submitted to the RAI treatment (131) at 15 mc, and didnt really have a reaction. Be gentle with yourself. … 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. It was an instant success with no surgical complications and a pleasant hospital stay. It is named after Robert Graves… "(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 was also diagnosed with Thyroid Eye Disease. It is based on the latest research, science, emerging evidence and patient success stories of Graves Disease and remission. Hi Everyone,I hope you are all staying safe and well during these challenging times. Kate became concerned this was more than just typical preschooler stuff. Graves' disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). I had just turned 40 years old and wanted a brand new lease on life so I had the surgery on March 9th, 2015 at St. Josephs Hospital in Phoenix, AZ. “He loves reading and loves math,” his mom says. The disease affects about 1 in 200 people. Although Graves' disease may affect anyone, it's more common among women and before t… The latter, hindering my promising opportunity to play in the NFL. Fighting Graves is a step by step guide for reversing Graves Disease. Nikki’s Graves’ was a smidge milder, but she was exhausted, 20+ symptoms, medicated, and was facing a choice between radioactive treatment or thyroidectomy because methimazole – medication used to treat Graves… Hyperthyroidism is a disease in which the thyroid gland makes more thyroid hormone than the body needs. The pressure this disease was putting on my heart and liver was no longer worth it.Over the next couple of months, I prayed about this impending surgery and interviewed various surgeons for the job. Deciphering Scientific Studies: Join the "Journal Club"! He or she will want to check on … I was diagnosed with Graves’ disease a few months after having a baby. “He called me at 7:30 Monday morning,” Kate says. Adversity for most is perceived as a hindrance, however in my life, it has been a constant motivation. “He told me, ‘Kade is going to be OK, but his thyroid is out of control.’” The moment Kade’s blood test results came in, Santos had called the Pediatric Thyroid Center at Children’s Hospital of Philadelphia to make an appointment. He takes his medicine every morning in some applesauce. The symptoms are numerous and life-changing, … This is the story of how I cured my Graves disease … So, if the child is well- managed, it’s reasonable to wait to see if they go into remission. Philadelphia, PA 19104, ©2021 The Children’s Hospital of Philadelphia. “People have tried supplements and even gluten-free diets, but — as of now — no data shows these efforts increase the chances for remission. The prognosis for Graves Disease remission was not a good one. My case was considered complex as I had an unusually high antibody count and a huge goiter that sometimes had the tendency to choke me. “He loves everything and wants to do everything. Thanks so much for this reply. Webinar on Long-Term Use of Antithyroid Drugs - Feb. 6th, Virtual Support Group Hosted by Yale Oculoplastic & Reconstructive Surgery, Short-Term Supply Disruption for TEPEZZA (TM), Webinar on Long-Term Use of Antithyroid Drugs - Saturday, Feb. 6th, Concerned ex girlfriend: graves rage & abuse, GDATF and Yale Oculoplastic & Reconstructive Surgery to host Virtual Support Group, My husbands behavior is irrational after TT. My journey … Kade’s heart was beating fast even when he was watching TV or playing quietly with toys. But his mother thought it was his asthma medication, which has a potential side effect of rapid heartbeat. 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. Personal Stories Of Graves Disease Once in a bottle and is frequent workout along with exercise and a careful diet is the master coordinator are ya ready it is against truth and Universal law will eventually … Imagine my shock! Unfortunately, two weeks prior to my surgery I got really ill and ended up in the ER when my thyroid was swelling up and choking me, not allowing me to clear my lungs. However, if there are frequent ups and downs in thyroid hormone levels and the associated adjustment in medication dosing disrupts a patient’s daily activities, the medical team will consider moving toward definitive therapy sooner rather than later. 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. 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. Doc says to use drops and ointment. My symptoms are tremors and high heart rate, eyes are good but I'm not skinny, wouldn't mind the skinny bit. Pressures are normal. After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). “He’s bouncing off the walls,” Kate says. It led me to have a thyroidectomy on October 8, 2018. The boys stay busy with street hockey, basketball, soccer, flag football, karate, tennis and golf. 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. Hi Friends! This dosage is unheard of unless you are on the verge of a Thyroid Storm.which was the dark road I was headed towards. I was forced to resign at my job and pursue disability. I’ve sustained injuries along the way that required surgeries, a collapsed lung, torn ACL and Meniscus. I continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps. As you begin to read my story, it may initially sound like many other stories, but its not. Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size. I hit many unusual and unfortunate bumps in the road before I came to a place of wellness, peace and acceptance.As the winter progressed, it felt like my health was starting to digress. And sleep is very rare."P.P. Graves’ disease occurs when a child’s immune system develops antibodies that attach to the thyroid cells, causing them to produce too much thyroid hormone. I knew then I needed to have the surgery as soon as possible despite my fear of going under the knife. When an active 4 1/2-year-old boy runs around a lot, isn’t that just typical little boy behavior? They were amazed I hadn't gone in to Cardiac Arrest. With Graves’ disease, your activated lymphocytes infiltrate the thyroid gland, leading to local inflammation or chronic thyroiditis, and in this case, high amounts of circulating thyroid hormone. So, if anyone needs thyroid surgery I the Phoenix area, please PM me and I can refer you to this excellent surgeon.Post-surgery, it has taken me a few years between trying Synthroid and natural thyroid meds (e.g. The choice for if, when and which form of definitive treatment is individualized for each patient. (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. I’m   fine”. A disease, what are you talking about? Thyroid levels are now in control but eyes are red and hurt. And he’s always hot, even in air conditioning, but it’s summertime. I had trouble sleeping, I had elevated an elevated heart rate/blood pressure, my hands would constantly shake, I started having frequent panic attacks and problems with my eyes. About 40% of people who stay on anti-thyroid meds in the US achieve remission, of that 40%, only about 5% stay in remission. Very. © 2021 Graves' Disease & Thyroid Foundation. I would either have a stroke or a heart attack from my heart going so fast. Once Kade was diagnosed with Graves’ disease, Andrew Bauer, MD, Director of the Thyroid Center, spent time explaining how the disease works and the course of treatment. That’s just how he is.”. It’s context of nail-biting. And all that activity could make him extra hungry and sweaty and have his heart race, couldn’t it? 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). My Diagnosis Story, contributed by Emma, age 17. In a person with Graves' disease… He’ll be doing really well for a while and then the numbers spike and the symptoms come back.”, During those periods, Kade musters his self-control while he’s in school and then lets loose once he’s home for the day. E-mail us at info@gdatf.org!NEW! “Dr. In almost a year that I've been on the medication and a few ultrasounds along the way, my levels have not decreased. Hi there IWonder, I read your posting with profound sadness. Five Years Later: Reflections and Celebrations of a Former Graves Girl, contributed via email by Christina Aragon. The GDATF is thrilled to present a webinar on long-term use of antithyroid medication on Saturday, Feb. 6th... Hello and welcome - Although many doctors will tell patients to avoid massive sources of iodine (such as... My girlfriend, who is currently living in Japan (I'm in Canada) is struggling with hyperthyroidism. Most narcissism is confronted graves disease stories by unfounded derision toward something of value to the lack of height. After living with Graves for three years, I can see both sides of this very well. I would highly recommend my surgeon over and over again. Educating myself on thyroid disease, acknowledging, understanding and accepting the disease has helped me tremendously during the healing process both physically and mentally. He wants to learn guitar and piano and Mandarin. My grandmother battled with an underactive thyroid for years.My doctor then referred me to a well-known endocrinologist who specialize in complex cases of Graves Disease. That’s what little boys do. I was placed on hormone replacement (Synthroid) right away. My life changed approximately 2004 with the diagnosis of Graves Disease. Manage Stress the activity and runny nose; For allergy … The truth is, if those symptoms had happened to a teenage girl, it wouldn’t be a leap to consider hyperthyroidism as a potential diagnosis. I have lived and learned (sometimes the hard way), but I feel like there are no what ifs or bargaining thoughts as I have taken every appropriate route and crazy turn to end up where Im at alive and healthy thank be to God. Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative … (via Facebook). I felt like I had everything going for me. Thanks so much for this reply. He has handled having Graves’ disease with a maturity well beyond his 8 years, and his family remains cautiously optimistic remission is possible. He’s sweet and kindhearted. Interesting enough, I have developed Hashimotos Disease and my liver enzymes are elevated (possibly due to the prolonged use of PTU). I was initially prescribed methimazole to see if my levels would decrease. Like T1D, the exact cause of Graves disease is unknown, but one of the theories around the onset of Graves is that it surfaces due to stress or an infection. I will look into these options! Pictured above with his mother Kathryn, aka "Mama Kat". However, both Hashimoto’s and Graves’ have an … Most patients will see a return to baseline, with the majority of their symptoms, including attention difficulties, anxiety, increased appetite, weight loss, fatigue and others, resolving. 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. As all of this was happening, my mental health was getting worse (Graves Rage) along with frequent panic attacks, and an overall decline of my health was persisting. 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. Your thyroid is a small gland at the base of your neck. My endo then surprised me and said based on my high antibody count and extremely large goiter, he didnt believe that another dose of RAI would be appropriate. (I mean, other than the COVID-19 crisis. PTU has a black box warning and its not meant to be taken long-term at higher dosages. Kade sees school as a learning adventure. My untreated Graves’ made me more or less a... Hey, I also have no symptoms (besides my thyroid being a little enlarged). 2 years on levels are still extremely high and can not get heart rate under 120 p/m. Keep your thoughts positive and your peace close. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. 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. I was... Hello and welcome - This video on the emotional aspects of Graves' disease will hopefully be of interest.... Hi Patsy—- I hope you are well. Graves' disease is an autoimmune disease that affects the thyroid gland. 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