Graves’ disease is the 5th quarter in my game of life, and all I can do is win." Thanks so much for this reply. Deciphering Scientific Studies: Join the "Journal Club"! My journey … Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. I would either have a stroke or a heart attack from my heart going so fast. (2) Graves’ disease symptoms can vary a lot depending on the individual and how severe the disorder … 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. Although Ive gained about 10 lbs. Be gentle with yourself. Five Years Later: Reflections and Celebrations of a Former Graves Girl, contributed via email by Christina Aragon. (via Facebook)"I had first symptoms at 27 but not diagnosed until 40.... Because I'm not skinny. Graves’ disease is a condition in which the body produces too much thyroid hormone, essentially the opposite of Hashimoto’s hypothyroid. 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 continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps. By the time I met with my new endo, she was like a breath of fresh air. – Jamal Londry-Jackson​. I was initially prescribed methimazole to see if my levels would decrease. 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. Options for definitive treatment include either surgically removing of the thyroid (thyroidectomy) or destruction of the thyroid using radioactive iodine (radioactive iodine ablation). 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. Five Years Later: Reflections and Celebrations of a Former Graves … The medication hasn’t zapped Kade’s energy. Interestingly, several members of both Kate’s extended family, and her husband’s, Mike’s, family, had been diagnosed with autoimmune thyroid disease. The right side of my thyroid was like three times the size of the left side. Graves Disease – My Story of Hyperthyroidism. Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size. I was forced to resign at my job and pursue disability. In a person with Graves' disease… I would highly recommend my surgeon over and over again. It is a matter of luck.”. Imagine my shock! 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. Kade sees school as a learning adventure. I could barely move or walk even a short distance because my body was in so much pain. The prognosis for Graves Disease remission was not a good one. He is constantly playing sports with his 6-year-old brother Alec. Fighting Graves is a step by step guide for reversing Graves Disease. After living with Graves for three years, I can see both sides of this very well. Just as being diagnosed with Graves’ disease, it is a health adversity, and one that I embrace. He’s eating an unbelievable amount of food, but he’s probably having a growth spurt.”. The disorder usually develops during middle age with a peak incidence of 40-60, but can also affect children, adolescents and the elderly. It is based on the latest research, science, emerging evidence and patient success stories of Graves Disease and remission. 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. Here I am 5 years later as happy and healthy as can be. I didnt turn bright neon green/yellow and none of my electronics sparked from nuclear contact. Your thyroid is a small gland at the base of your neck. I was diagnosed with Hyperthyroidism and Graves' Disease. “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. Here's to 5 years of being thyroidless and overcoming Graves Disease!! 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. That’s just how he is.”. It was an instant success with no surgical complications and a pleasant hospital stay. This is the story of how I cured my Graves disease … 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 is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). The initial step is to start a medication, which works by lowering the amount of thyroid hormone. 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. This is usually the first test the doctor orders. I felt like I had everything going for me. I think my biggest grip since being hypothyroid is how easily I tire sometimes as some days/nights are worse than others. I was also diagnosed with Thyroid Eye Disease. For the last six months or so, Kade’s Graves’ disease has been under control and so have his symptoms. We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. Graves' disease is an autoimmune disorder that causes hyperthyroidism and is the most common cause of hyperthyroidism in the U.S. Graves’ disease … 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. The symptoms are numerous and life-changing, … I was diagnosed with Graves’ disease a few months after having a baby. Remission is most likely within five years of diagnosis. 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. The boys stay busy with street hockey, basketball, soccer, flag football, karate, tennis and golf. Graves’ disease is an autoimmune disorder characterized by a hyperthyroid state and the accompanying signs and symptoms caused by excess thyroid hormone. Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization. I ended up hiring my endos recommendation for a surgeon. I could sense my doctors frustration, so she recommended another round of RAI. Testing TSH Levels. 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. The thought of RAI just didnt sit well with me this early on in the condition. 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. He or she will want to check on … I kept telling myself,   “I’ve been playing sports since I was 4 years old. It is a horrible experience!"T.P.M. Females are five to 10 times more likely than males to have Graves’ disease, the autoimmune form of hyperthyroidism. An infection can trigger antibodies … I knew thyroid problems ran in my family, but mostly Hypothyroidism, as far as I could recall. (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. “He’s bouncing off the walls,” Kate says. Although Graves' disease may affect anyone, it's more common among women and before t… For the first time, I seriously started thinking of submitting to RAI. Graves’ disease occurs in almost any part of the world. So, if the child is well- managed, it’s reasonable to wait to see if they go into remission. He’s sweet and kindhearted. 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. I’ve sustained injuries along the way that required surgeries, a collapsed lung, torn ACL and Meniscus. My symptoms are tremors and high heart rate, eyes are good but I'm not skinny, wouldn't mind the skinny bit. About 40% of people who stay on anti-thyroid meds in the US achieve remission, of that 40%, only about 5% stay in remission. Graves’ disease is an autoimmune disease that leads to a generalized overactivity of the entire thyroid gland (hyperthyroidism). After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). I am going thru the active inflammation phase of graves eye disease. Im still on PTU and my thyroid levels are up and down. Living with Myasthenia Gravis and Graves Disease This story is about Graves Disease (thyroid)) and Myasthenia Gravis (MG means grave muscle).. This season of my life will afford me the opportunity to learn more about the disease, the most common cause of hyperthyroidism. "(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”. 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. “He gets hot, and he gets very naughty and doesn’t listen. I’m   fine”. Armour Thyroid, etc.) Click here to read. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. Doc says to use drops and ointment. 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 thought of this surgery just terrified me!! Hyperthyroidism is a disease in which the thyroid gland makes more thyroid hormone than the body needs. 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. Although it was my worst fear, I was comforted in the fact that I have exhausted all treatment options for this disease. That’s a huge relief for the family. Hope that all is well with you. 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. to get stabilized. Graves' Disease Support Group. Upon decreasing my PTU, my Graves flared up with a vengeance. Pressures are normal. At this time, my doctors were really pushing for me to do RAI as soon as possible. The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone! 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 must not question that, as it won’t bring me to a better place. 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 watched this video already actually and appreciated the perspective. 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 … As a former athlete, getting physicals was of the norm to be able to play this day I still live and breathe football. It could always be worse, I like to say.Stress is a major trigger and managing that is my new life project. It’s context of nail-biting. Wendy Williams is taking some time off from her popular daytime talk show to focus on her health. 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 had minimal scarring post-surgery. 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. “It’s busy around here, but a lot of fun,” Kate says. 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. 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. 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. If you are struggling with Graves Disease/Hyperthyroidism, I wish you the very best. Hi there IWonder, I read your posting with profound sadness. That’s what little boys do. I will look into these options! "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. His mother, Kate, says she thought, “He’s 4 and running all over the place. 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. He wants to learn guitar and piano and Mandarin. Doctors are not sure what causes Graves’ disease. In January of 2002, I was diagnosed with Graves disease, a form of hyperthyroidism. NEW! 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 affects the thyroid gland. 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. Graves’ disease is an immune system disorder of the thyroid gland in the throat. 2 years on levels are still extremely high and can not get heart rate under 120 p/m. “He doesn’t think about it or talk about it. It is named after Robert Graves… 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. Not "looking" sick but feeling's tough. Greater Than Graves' 2012 Coast-to-Coast Ride! Thyroid levels are now in control but eyes are red and hurt. The choice for if, when and which form of definitive treatment is individualized for each patient. … All those things started happening to Kade gradually over the spring and summer of 2015. Kade’s heart was beating fast even when he was watching TV or playing quietly with toys. 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. Hi Everyone,I hope you are all staying safe and well during these challenging times. It led me to have a thyroidectomy on October 8, 2018. Feel free to contact me with any questions.My story begins back in the Winter of 2011 at the age of 36. 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. 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. 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. Your advice is great. Kade is a bit of an anomaly. The mechanism of disease involves an … I got sent to the ER on February 3rd, 2014, I got admitted into the hospital with … ). 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. Interesting enough, I have developed Hashimotos Disease and my liver enzymes are elevated (possibly due to the prolonged use of PTU). (via Facebook). “He loves reading and loves math,” his mom 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. E-mail us at!NEW! I was placed on hormone replacement (Synthroid) right away. Graves' … Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative … Graves is the most common form of hyperthyroidism. Like I said, things were great for about a year and a half until we started to decrease my PTU. (I mean, other than the COVID-19 crisis. The latter, hindering my promising opportunity to play in the NFL. 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). 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. 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