I continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps. The prognosis for Graves Disease remission was not a good one. Be gentle with yourself. I limped when I walked and needed a cane as a walking aide. 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. Testing TSH Levels. However, both Hashimoto’s and Graves’ have an … For the first time, I seriously started thinking of submitting to RAI. The thought of this surgery just terrified me!! 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. 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. Remission is most likely within five years of diagnosis. Living with Myasthenia Gravis and Graves Disease This story is about Graves Disease (thyroid)) and Myasthenia Gravis (MG means grave muscle).. 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. “He loves reading and loves math,” his mom says. I knew then I needed to have the surgery as soon as possible despite my fear of going under the knife. Then a new doctor ran some bloods just for interest. 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 is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). 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. Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size. Graves' disease is an autoimmune disorder that causes hyperthyroidism and is the most common cause of hyperthyroidism in the U.S. Santos knew he had to get Kade seen ASAP,” she says, “and the Thyroid Center fit him in quickly.”. 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. A disease, what are you talking about? (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 ended up hiring my endos recommendation for a surgeon. 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. Kade’s heart was beating fast even when he was watching TV or playing quietly with toys. And he started barely being able to make it to the bathroom, even though he was a kid who never had accidents. Here I am 5 years later as happy and healthy as can be. Doctors are not sure what causes Graves’ disease. NEW! In a person with Graves' disease… Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. Five Years Later: Reflections and Celebrations of a Former Graves … 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. The initial step is to start a medication, which works by lowering the amount of thyroid hormone. My untreated Graves’ made me more or less a... Hey, I also have no symptoms (besides my thyroid being a little enlarged). I was placed on hormone replacement (Synthroid) right away. He wants to learn guitar and piano and Mandarin. November 2015, I was diagnosed with Graves’   disease. The choice for if, when and which form of definitive treatment is individualized for each patient. For the last six months or so, Kade’s Graves’ disease has been under control and so have his symptoms. Although Ive gained about 10 lbs. I felt like I had everything going for me. Kate became concerned this was more than just typical preschooler stuff. “He loves everything and wants to do everything. They welcomed me back with open arms and ran some blood work. Finally they diagnosed me as Parkinsons because tremors were beyond bad. Wendy Williams is taking some time off from her popular daytime talk show to focus on her health. This idea wasnt sitting well with me so I went for a second opinion. (2) Graves’ disease symptoms can vary a lot depending on the individual and how severe the disorder … The disorder usually develops during middle age with a peak incidence of 40-60, but can also affect children, adolescents and the elderly. “People have tried supplements and even gluten-free diets, but — as of now — no data shows these efforts increase the chances for remission. I think my biggest grip since being hypothyroid is how easily I tire sometimes as some days/nights are worse than others. 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. Your advice is great. Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative … Graves’ disease occurs in almost any part of the world. 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. Your thyroid is a small gland at the base of your neck. By the time I met with my new endo, she was like a breath of fresh air. And all that activity could make him extra hungry and sweaty and have his heart race, couldn’t it? So, if the child is well- managed, it’s reasonable to wait to see if they go into remission. So, me and my poor painful body secretly searched for a new endocrinologist. 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. So, I submitted to the RAI treatment (131) at 15 mc, and didnt really have a reaction. It is named after Robert Graves… Manage Stress the activity and runny nose; For allergy … 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'. 2 years on levels are still extremely high and can not get heart rate under 120 p/m. I must not question that, as it won’t bring me to a better place. 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. ). Graves is the most common form of hyperthyroidism. My levels where off the charts, specialist had never seen such high levels. He’s sweet and kindhearted. An infection can trigger antibodies … 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. Hyperthyroidism is a disease in which the thyroid gland makes more thyroid hormone than the body needs. Graves’ disease is an immune system disorder of the thyroid gland in the throat. 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. 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. Both are very difficult to live with. Kade is a bit of an anomaly. I’ve sustained injuries along the way that required surgeries, a collapsed lung, torn ACL and Meniscus. 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 affects females more often than males by a ratio of 5-10 to 1. 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. Educating myself on thyroid disease, acknowledging, understanding and accepting the disease has helped me tremendously during the healing process both physically and mentally. 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. I actually went back to my original endo with some slight embarrassment considering I didnt really leave on the best terms. I completed the uptake scan (RAI 123) with the nuclear medicine doctor. When an active 4 1/2-year-old boy runs around a lot, isn’t that just typical little boy behavior? 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. 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. Thanks so much for this reply. As Kade’s thyroid hormone … The mechanism of disease involves an … I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. Im finally stabilized and at a point where I feel pretty good or lets say I have found my new norm. Thanks so much for this reply. And sleep is very rare."P.P. Best to us all..."K.C.T. 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. He then recommended a Total Thyroidectomy surgery with one of the best endocrine surgeons in the state. The right side of my thyroid was like three times the size of the left side. I was diagnosed with Graves’ disease a few months after having a baby. I spent a week home alone mostly reading and watching Netflix while I wondered what was occurring in my newly radiated body.Fast forward six months and the RAI hasnt worked. Graves’ disease is a condition in which the body produces too much thyroid hormone, essentially the opposite of Hashimoto’s hypothyroid. Like I said, things were great for about a year and a half until we started to decrease my PTU. He’s eating an unbelievable amount of food, but he’s probably having a growth spurt.”. His mother, Kate, says she thought, “He’s 4 and running all over the place. About 40% of people who stay on anti-thyroid meds in the US achieve remission, of that 40%, only about 5% stay in remission. “He called me at 7:30 Monday morning,” Kate says. 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 could sense my doctors frustration, so she recommended another round of RAI. But his mother thought it was his asthma medication, which has a potential side effect of rapid heartbeat. Pressures are normal. 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. 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. 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. It was an instant success with no surgical complications and a pleasant hospital stay. I had nightmare stories about RAI and its side effects, but it felt like nothing to me. 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. Graves’ disease was first identified by Irish physician Robert Graves about 150 years ago. After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). I could barely move or walk even a short distance because my body was in so much pain. “He doesn’t think about it or talk about it. I had minimal scarring post-surgery. since being thyroid less, and my weight still seems to fluctuate a bit. My life changed approximately 2004 with the diagnosis of Graves Disease. As Kade’s thyroid hormone production returned to normal, so did his gentle personality and (mostly) good behavior. Graves’ disease … 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! 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. There is light and life at the end of the tunnel, and I hope you find my positive story uplifting. PTU has a black box warning and its not meant to be taken long-term at higher dosages. Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization. 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. © 2021 Graves' Disease & Thyroid Foundation. The more I researched, the more I linked Graves Disease … Although Graves' disease may affect anyone, it's more common among women and before t… He has handled having Graves’ disease with a maturity well beyond his 8 years, and his family remains cautiously optimistic remission is possible. It is a horrible experience!"T.P.M. Although a number of disorders may result in hyperthyroidism, Graves' disease is a common cause.Because thyroid hormones affect a number of different body systems, signs and symptoms associated with Graves' disease can be wide ranging and significantly influence your overall well-being. Hi Friends! Thanks for checking in, Rob! But they all had hypothyroidism, known as Hashimoto’s thyroiditis, a condition where their thyroid doesn’t produce enough thyroid hormone. 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. Graves’ disease is an autoimmune disorder characterized by a hyperthyroid state and the accompanying signs and symptoms caused by excess thyroid hormone. 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. I was living a healthier lifestyle by exercising more and eating healthier. 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. I didnt turn bright neon green/yellow and none of my electronics sparked from nuclear contact. He or she will want to check on … Hey Kimberly, thanks so much for the response. “I can tell in a hurry,” says Kate, when his thyroid hormone levels have increased. … 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). We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. Graves' is an autoimmune disorder that results in hyperthyroidism, or the overproduction of thyroid hormones, which can cause everything from a racing heart to bulging eyes to anxiety (all … Your thyroid gland makes hormones that control many activities in your body, including how fast your heart beats and how fast you burn calories.. This is the story of how I cured my Graves disease … "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. The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone! 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. Keep your thoughts positive and your peace close. Interesting enough, I have developed Hashimotos Disease and my liver enzymes are elevated (possibly due to the prolonged use of PTU). If you are struggling with Graves Disease/Hyperthyroidism, I wish you the very best. Five Years Later: Reflections and Celebrations of a Former Graves Girl, contributed via email by Christina Aragon. My journey … 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. He is constantly playing sports with his 6-year-old brother Alec. Adversity for most is perceived as a hindrance, however in my life, it has been a constant motivation. That is, until you google the disease and find a whole bunch of scary information and quickly realize the severity of a chronic illness. Little sister Noelle, 3, tries to keep up with her brothers. Upon decreasing my PTU, my Graves flared up with a vengeance. I was diagnosed with Hyperthyroidism and Graves' Disease. I was also diagnosed with Thyroid Eye Disease. Fighting Graves is a step by step guide for reversing Graves Disease. Philadelphia, PA 19104, ©2021 The Children’s Hospital of Philadelphia. “He gets hot, and he gets very naughty and doesn’t listen. I’m   fine”. 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. And he’s always hot, even in air conditioning, but it’s summertime. Although none of these options seemed appealing to me, I started out taking Methimazole, accompanied by beta blockers and anti-anxiety medications. Although Kade is doing well, it has been more than three years since his diagnosis, and his thyroid stimulating antibody levels are still elevated. Graves’ disease is an autoimmune disease that leads to a generalized overactivity of the entire thyroid gland (hyperthyroidism). (I mean, other than the COVID-19 crisis. The disease … Just as being diagnosed with Graves’ disease, it is a health adversity, and one that I embrace. I got sent to the ER on February 3rd, 2014, I got admitted into the hospital with … When I was first diagnosed, my condition was so bad that I was taking between 12-15 pills a day and I was on 60 MG of Methimazole. Here's to 5 years of being thyroidless and overcoming Graves Disease!! There are certain risk factors that may increase the chance that you will have it, such as: Would you like to share your own experience with Graves' disease, Hashimoto's thyroiditis, thyroid nodules, or other issues? “It’s busy around here, but a lot of fun,” Kate says. E-mail us at info@gdatf.org!NEW! “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. 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. That’s just how he is.”. (via Facebook)"I had first symptoms at 27 but not diagnosed until 40.... Because I'm not skinny. 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. Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. “Dr. 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. They were amazed I hadn't gone in to Cardiac Arrest. “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 … I was initially prescribed methimazole to see if my levels would decrease. 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 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. He takes his medicine every morning in some applesauce. My symptoms are tremors and high heart rate, eyes are good but I'm not skinny, wouldn't mind the skinny bit. "(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”. (via Facebook)"I was diagnosed last year. 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' … 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. In January of 2002, I was diagnosed with Graves disease, a form of hyperthyroidism. I just made an updated video as I recently had a relapse. 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. All those things started happening to Kade gradually over the spring and summer of 2015. This dosage is unheard of unless you are on the verge of a Thyroid Storm.which was the dark road I was headed towards. The medication hasn’t zapped Kade’s energy. I kept telling myself,   “I’ve been playing sports since I was 4 years old. Hi there IWonder, I read your posting with profound sadness. “He’s bouncing off the walls,” Kate says. At the time, I was just starting out in my career as a school counselor, had just bought my first home and was in a new relationship. I would highly recommend my surgeon over and over again. (via Facebook). 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… It is the most common cause of hyperthyroidism in the United States. Thank goodness for Urgent Care facilities. My Diagnosis Story, contributed by Emma, age 17. Hi Everyone,I hope you are all staying safe and well during these challenging times. It is based on the latest research, science, emerging evidence and patient success stories of Graves Disease and remission. 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Hospital stay to a better place original endo with some slight embarrassment considering I really... Total thyroidectomy surgery with one of the left side months after having a baby since I was living healthier! 10,000 children in the fact that I have found my new norm the most common cause of hyperthyroidism in Winter...