Kate became concerned this was more than just typical preschooler stuff. 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. My Diagnosis Story, contributed by Emma, age 17. 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. 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. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. At Kade’s 5-year well visit at CHOP Primary Care, High Point, his pediatrician, Richard Santos, MD, ran a urine test and, later, some blood tests to try and figure out if there was a medical explanation for the changes in Kade’s behavior. He’s sweet and kindhearted. 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 Kade’s thyroid hormone production returned to normal, so did his gentle personality and (mostly) good behavior. “He loves everything and wants to do everything. 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. This is the story of how I cured my Graves disease … Graves’ disease is an immune system disorder of the thyroid gland in the throat. I think my biggest grip since being hypothyroid is how easily I tire sometimes as some days/nights are worse than others. The symptoms are numerous and life-changing, … Graves’ disease is an autoimmune disease that leads to a generalized overactivity of the entire thyroid gland (hyperthyroidism). Hey Kimberly, thanks so much for the response. 2 years on levels are still extremely high and can not get heart rate under 120 p/m. I am going thru the active inflammation phase of graves eye disease. It could always be worse, I like to say.Stress is a major trigger and managing that is my new life project. There is light and life at the end of the tunnel, and I hope you find my positive story uplifting. Graves’ disease occurs in almost any part of the world. Here's to 5 years of being thyroidless and overcoming Graves Disease!! I didnt turn bright neon green/yellow and none of my electronics sparked from nuclear contact. 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… I was diagnosed with Hyperthyroidism and Graves' Disease. Doctors are not sure what causes Graves’ disease. (I mean, other than the COVID-19 crisis. 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. The initial step is to start a medication, which works by lowering the amount of thyroid hormone. When an active 4 1/2-year-old boy runs around a lot, isn’t that just typical little boy behavior? Keep your thoughts positive and your peace close. For the first time, I seriously started thinking of submitting to RAI. I knew then I needed to have the surgery as soon as possible despite my fear of going under the knife. 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. He is constantly playing sports with his 6-year-old brother Alec. Hope that all is well with you. Thyroid levels are now in control but eyes are red and hurt. 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. “Graves’ Disease Life Stories” EBook was created by all of you- specifically 32 people, from all different continents- Australia, New Zealand, North and South America, Africa, Europe and Asia: men and … Then he began misbehaving, which wasn’t like him. We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. Graves Disease – My Story of Hyperthyroidism. At this time, my doctors were really pushing for me to do RAI as soon as possible. Graves’ disease is an autoimmune disorder characterized by a hyperthyroid state and the accompanying signs and symptoms caused by excess thyroid hormone. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. 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. About 40% of people who stay on anti-thyroid meds in the US achieve remission, of that 40%, only about 5% stay in remission. I was also diagnosed with Thyroid Eye Disease. As much as I just wanted to get off the meds, I couldnt as I was warned against the possibility of going into Thyroid Storm. The thought of RAI just didnt sit well with me this early on in the condition. However, both Hashimoto’s and Graves’ have an … In fact, if I did it again, I might be looking at doses in the amount given to thyroid cancer patients. Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. My levels where off the charts, specialist had never seen such high levels. Santos knew he had to get Kade seen ASAP,” she says, “and the Thyroid Center fit him in quickly.”. My life changed approximately 2004 with the diagnosis of Graves Disease. During each quarterly clinic visit, Dr. Bauer reviews the chances that Kade’s Graves’ disease will go into remission, an event that happens in approximately 20 percent of patients. “He doesn’t think about it or talk about it. Hi there IWonder, I read your posting with profound sadness. © 2021 Graves' Disease & Thyroid Foundation. And he started barely being able to make it to the bathroom, even though he was a kid who never had accidents. 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. After my diagnosis with Graves disease I was overwhelmed with the lack of information available on how to treat it and how few success stories there were. Five Years Later: Reflections and Celebrations of a Former Graves Girl, contributed via email by Christina Aragon. The thought of this surgery just terrified me!! It is the most common cause of hyperthyroidism in the United States. 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 could barely move or walk even a short distance because my body was in so much pain. Females are five to 10 times more likely than males to have Graves’ disease, the autoimmune form of hyperthyroidism. That is, until you google the disease and find a whole bunch of scary information and quickly realize the severity of a chronic illness. He then recommended a Total Thyroidectomy surgery with one of the best endocrine surgeons in the state. 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! I’ve sustained injuries along the way that required surgeries, a collapsed lung, torn ACL and Meniscus. An infection can trigger antibodies … So, I submitted to the RAI treatment (131) at 15 mc, and didnt really have a reaction. Graves’ Disease Case Study – Sue Brown Background Perhaps I am a-typical because I first started with Graves Disease symptoms in 2001, diagnosed in 2002 when I first consulted my GP. Overall, I'm feeling pretty good now and if I had to do it all over again, I dont think I would have done anything differently. The disease … My untreated Graves’ made me more or less a... Hey, I also have no symptoms (besides my thyroid being a little enlarged). What fun. 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. 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 limped when I walked and needed a cane as a walking aide. Fighting Graves is a step by step guide for reversing Graves Disease. I could sense my doctors frustration, so she recommended another round of RAI. I felt like I had everything going for me. Testing TSH Levels. 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. Interesting enough, I have developed Hashimotos Disease and my liver enzymes are elevated (possibly due to the prolonged use of PTU). So, me and my poor painful body secretly searched for a new endocrinologist. “Unfortunately, even with the best of care, there are no medications or changes in the diet that increase the chances for a patient to achieve remission,” Dr. Bauer says. "(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. In January of 2002, I was diagnosed with Graves disease, a form of hyperthyroidism. Armour Thyroid, etc.) 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. 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'. 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. Graves' … 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. (via Facebook)"I was diagnosed last year. Pressures are normal. I must not question that, as it won’t bring me to a better place. Graves' disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). Thank goodness for Urgent Care facilities. Interestingly, several members of both Kate’s extended family, and her husband’s, Mike’s, family, had been diagnosed with autoimmune thyroid disease. Although Graves' disease may affect anyone, it's more common among women and before t… And all that activity could make him extra hungry and sweaty and have his heart race, couldn’t it? The right side of my thyroid was like three times the size of the left side. Kade sees school as a learning adventure. to get stabilized. 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 … Options for definitive treatment include either surgically removing of the thyroid (thyroidectomy) or destruction of the thyroid using radioactive iodine (radioactive iodine ablation). That’s a huge relief for the family. But his mother thought it was his asthma medication, which has a potential side effect of rapid heartbeat. Most narcissism is confronted graves disease stories by unfounded derision toward something of value to the lack of height. Doc says to use drops and ointment. “He’s bouncing off the walls,” Kate says. Not "looking" sick but feeling terrible...it's tough. The disorder usually develops during middle age with a peak incidence of 40-60, but can also affect children, adolescents and the elderly. Kade’s heart was beating fast even when he was watching TV or playing quietly with toys. 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. 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! (via Facebook). Then a new doctor ran some bloods just for interest. Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative … The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone! A disease, what are you talking about? The disease affects about 1 in 200 people. E-mail us at info@gdatf.org!NEW! And he’s always hot, even in air conditioning, but it’s summertime. since being thyroid less, and my weight still seems to fluctuate a bit. The choice for if, when and which form of definitive treatment is individualized for each patient. I was forced to resign at my job and pursue disability. 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. 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. I would either have a stroke or a heart attack from my heart going so fast. Although Kade is doing well, it has been more than three years since his diagnosis, and his thyroid stimulating antibody levels are still elevated. “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. Im still on PTU and my thyroid levels are up and down. 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. I had nightmare stories about RAI and its side effects, but it felt like nothing to me. Graves’ disease affects females more often than males by a ratio of 5-10 to 1. That’s what little boys do. It was an instant success with no surgical complications and a pleasant hospital stay. It is named after Robert Graves… All those things started happening to Kade gradually over the spring and summer of 2015. Like I said, things were great for about a year and a half until we started to decrease my PTU. Would you like to share your own experience with Graves' disease, Hashimoto's thyroiditis, thyroid nodules, or other issues? I was placed on hormone replacement (Synthroid) right away. 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. It is a matter of luck.”. I would highly recommend my surgeon over and over again. 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. The prognosis for Graves Disease remission was not a good one. 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