Your advice is great. since being thyroid less, and my weight still seems to fluctuate a bit. Hi there IWonder, I read your posting with profound sadness. 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. (via Facebook)"I was diagnosed last year. The disease affects about 1 in 200 people. In almost a year that I've been on the medication and a few ultrasounds along the way, my levels have not decreased. He takes his medicine every morning in some applesauce. 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. PTU has a black box warning and its not meant to be taken long-term at higher dosages. He then recommended a Total Thyroidectomy surgery with one of the best endocrine surgeons in the state. 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. “Dr. Thyroid levels are now in control but eyes are red and hurt. Here's to 5 years of being thyroidless and overcoming Graves Disease!! 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'. I had minimal scarring post-surgery. Although it was my worst fear, I was comforted in the fact that I have exhausted all treatment options for this disease. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. 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. And he’s always hot, even in air conditioning, but it’s summertime. Although Kade is doing well, it has been more than three years since his diagnosis, and his thyroid stimulating antibody levels are still elevated. The disorder usually develops during middle age with a peak incidence of 40-60, but can also affect children, adolescents and the elderly. Upon decreasing my PTU, my Graves flared up with a vengeance. The thought of RAI just didnt sit well with me this early on in the condition. 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. 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. A disease, what are you talking about? For the last six months or so, Kade’s Graves’ disease has been under control and so have his symptoms. Options for definitive treatment include either surgically removing of the thyroid (thyroidectomy) or destruction of the thyroid using radioactive iodine (radioactive iodine ablation). 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. The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone! "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. Kade is a bit of an anomaly. “It’s busy around here, but a lot of fun,” Kate says. 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! “He loves everything and wants to do everything. The more I researched, the more I linked Graves Disease … Im finally stabilized and at a point where I feel pretty good or lets say I have found my new norm. The boys stay busy with street hockey, basketball, soccer, flag football, karate, tennis and golf. This idea wasnt sitting well with me so I went for a second opinion. 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. (via Facebook)"I had first symptoms at 27 but not diagnosed until 40.... Because I'm not skinny. His mother, Kate, says she thought, “He’s 4 and running all over the place. Your thyroid is a small gland at the base of your neck. ). 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. Here I am 5 years later as happy and healthy as can be. 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. Testing TSH Levels. November 2015, I was diagnosed with 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. 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. Then a new doctor ran some bloods just for interest. I didnt turn bright neon green/yellow and none of my electronics sparked from nuclear contact. NEW! Fighting Graves is a step by step guide for reversing Graves Disease. Like I said, things were great for about a year and a half until we started to decrease my PTU. After living with Graves for three years, I can see both sides of this very well. “He tells me, ‘I try so hard to be a good boy at school.’ He really wants to please his teacher, so I understand.”. So, if the child is well- managed, it’s reasonable to wait to see if they go into remission. Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. 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. 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. I am going thru the active inflammation phase of graves eye disease. Doctors are not sure what causes Graves’ disease. About 40% of people who stay on anti-thyroid meds in the US achieve remission, of that 40%, only about 5% stay in remission. Hope that all is well with you. (2) Graves’ disease symptoms can vary a lot depending on the individual and how severe the disorder … Educating myself on thyroid disease, acknowledging, understanding and accepting the disease has helped me tremendously during the healing process both physically and mentally. That’s just how he is.”. And all that activity could make him extra hungry and sweaty and have his heart race, couldn’t it? An infection can trigger antibodies … All those things started happening to Kade gradually over the spring and summer of 2015. I was diagnosed with Hyperthyroidism and Graves' Disease. 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 limped when I walked and needed a cane as a walking aide. “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. It is a matter of luck.”. I would highly recommend my surgeon over and over again. Graves’ disease affects females more often than males by a ratio of 5-10 to 1. Greater Than Graves' 2012 Coast-to-Coast Ride! So, I submitted to the RAI treatment (131) at 15 mc, and didnt really have a reaction. He is constantly playing sports with his 6-year-old brother Alec. Santos knew he had to get Kade seen ASAP,” she says, “and the Thyroid Center fit him in quickly.”. We all endure adversities, no one’s journey is easy. Although Graves' disease may affect anyone, it's more common among women and before t… I continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps. Your thyroid gland makes hormones that control many activities in your body, including how fast your heart beats and how fast you burn calories.. The mechanism of disease involves an … It is based on the latest research, science, emerging evidence and patient success stories of Graves Disease and remission. Adversity for most is perceived as a hindrance, however in my life, it has been a constant motivation. 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. 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. “He gets hot, and he gets very naughty and doesn’t listen. Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative … Although none of these options seemed appealing to me, I started out taking Methimazole, accompanied by beta blockers and anti-anxiety medications. 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. But they all had hypothyroidism, known as Hashimoto’s thyroiditis, a condition where their thyroid doesn’t produce enough thyroid hormone. What fun. As Kade’s thyroid hormone production returned to normal, so did his gentle personality and (mostly) good behavior. I had nightmare stories about RAI and its side effects, but it felt like nothing to me. I was forced to resign at my job and pursue disability. Living with Myasthenia Gravis and Graves Disease This story is about Graves Disease (thyroid)) and Myasthenia Gravis (MG means grave muscle).. 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. They welcomed me back with open arms and ran some blood work. 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. I’m   fine”. I knew then I needed to have the surgery as soon as possible despite my fear of going under the knife. Deciphering Scientific Studies: Join the "Journal Club"! 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. 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. That’s a huge relief for the family. So, me and my poor painful body secretly searched for a new endocrinologist. 2 years on levels are still extremely high and can not get heart rate under 120 p/m. 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! I watched this video already actually and appreciated the perspective. 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. In a person with Graves' disease… It is named after Robert Graves… I was diagnosed with Graves’ disease a few months after having a baby. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. He has handled having Graves’ disease with a maturity well beyond his 8 years, and his family remains cautiously optimistic remission is possible. E-mail us at [email protected]!NEW! Females are five to 10 times more likely than males to have Graves’ disease, the autoimmune form of hyperthyroidism. 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. Click here to read. Doc says to use drops and ointment. (I mean, other than the COVID-19 crisis. 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 … It is a horrible experience!"T.P.M. 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. Hi Friends! I felt like I had everything going for me. 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 would either have a stroke or a heart attack from my heart going so fast. Thanks for checking in, Rob! After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). But his mother thought it was his asthma medication, which has a potential side effect of rapid heartbeat. I was placed on hormone replacement (Synthroid) right away. Feel free to contact me with any questions.My story begins back in the Winter of 2011 at the age of 36. Children’s Hospital of Philadelphia is a charitable 501(c)(3) nonprofit organization. © 2021 Graves' Disease & Thyroid Foundation. Five Years Later: Reflections and Celebrations of a Former Graves … I was initially prescribed methimazole to see if my levels would decrease. 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. At this time, my doctors were really pushing for me to do RAI as soon as possible. Very. Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size. 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. If you are struggling with Graves Disease/Hyperthyroidism, I wish you the very best. As Kade’s thyroid hormone … The symptoms are numerous and life-changing, … My journey … 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. 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 got sent to the ER on February 3rd, 2014, I got admitted into the hospital with … 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. Would you like to share your own experience with Graves' disease, Hashimoto's thyroiditis, thyroid nodules, or other issues? 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. I just made an updated video as I recently had a relapse. 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 was first identified by Irish physician Robert Graves about 150 years ago. 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. Finally they diagnosed me as Parkinsons because tremors were beyond bad. Graves' disease is an autoimmune disorder that causes hyperthyroidism and is the most common cause of hyperthyroidism in the U.S. 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. … “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 called me at 7:30 Monday morning,” Kate says. Pressures are normal. 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