Thanks so much for this reply. Fighting Graves is a step by step guide for reversing Graves Disease. I was placed on hormone replacement (Synthroid) right away. 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. to get stabilized. E-mail us at info@gdatf.org!NEW! 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. Graves’ disease, which affects approximately 1 in 10,000 children in the United States, is the most common type of hyperthyroidism. 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'. So, if the child is well- managed, it’s reasonable to wait to see if they go into remission. Then he began misbehaving, which wasn’t like him. An infection can trigger antibodies … Graves’ disease is an immune system disorder of the thyroid gland in the throat. My levels where off the charts, specialist had never seen such high levels. After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). Best to us all..."K.C.T. Hey Kimberly, thanks so much for the response. Upon decreasing my PTU, my Graves flared up with a vengeance. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. 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 Kade’s thyroid hormone … Graves’ disease … In fact, if I did it again, I might be looking at doses in the amount given to thyroid cancer patients. Both are very difficult to live with. 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. 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. since being thyroid less, and my weight still seems to fluctuate a bit. He’s eating an unbelievable amount of food, but he’s probably having a growth spurt.”. (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 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’s sweet and kindhearted. 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. "(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. And he started barely being able to make it to the bathroom, even though he was a kid who never had accidents. I would either have a stroke or a heart attack from my heart going so fast. 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. 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. However, both Hashimoto’s and Graves’ have an … Hi Friends! “He doesn’t think about it or talk about it. I could sense my doctors frustration, so she recommended another round of RAI. And he’s always hot, even in air conditioning, but it’s summertime. He is constantly playing sports with his 6-year-old brother Alec. "(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”. It was an instant success with no surgical complications and a pleasant hospital stay. Graves’ disease is a condition in which the body produces too much thyroid hormone, essentially the opposite of Hashimoto’s hypothyroid. 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. 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. “He gets hot, and he gets very naughty and doesn’t listen. 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. “He tells me, ‘I try so hard to be a good boy at school.’ He really wants to please his teacher, so I understand.”. But they all had hypothyroidism, known as Hashimoto’s thyroiditis, a condition where their thyroid doesn’t produce enough thyroid hormone. 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! Pictured above with his mother Kathryn, aka "Mama Kat". 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. I was also diagnosed with Thyroid Eye Disease. 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. 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. Doctors are not sure what causes Graves’ disease. I was diagnosed with Hyperthyroidism and Graves' Disease. Thanks so much for this reply. The medication hasn’t zapped Kade’s energy. I ended up hiring my endos recommendation for a surgeon. I was forced to resign at my job and pursue disability. My symptoms are tremors and high heart rate, eyes are good but I'm not skinny, wouldn't mind the skinny bit. This dosage is unheard of unless you are on the verge of a Thyroid Storm.which was the dark road I was headed towards. “He acts like it’s not a big deal,” Kate says. I continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps. Interestingly, several members of both Kate’s extended family, and her husband’s, Mike’s, family, had been diagnosed with autoimmune thyroid disease. So, me and my poor painful body secretly searched for a new endocrinologist. Hi Everyone,I hope you are all staying safe and well during these challenging times. We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. Here's to 5 years of being thyroidless and overcoming Graves Disease!! 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. Kate became concerned this was more than just typical preschooler stuff. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. Graves’ disease is an autoimmune disease that leads to a generalized overactivity of the entire thyroid gland (hyperthyroidism). 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. Although none of these options seemed appealing to me, I started out taking Methimazole, accompanied by beta blockers and anti-anxiety medications. This is usually the first test the doctor orders. 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. Graves' Disease Support Group. The latter, hindering my promising opportunity to play in the NFL. When an active 4 1/2-year-old boy runs around a lot, isn’t that just typical little boy behavior? Manage Stress the activity and runny nose; For allergy … 2 years on levels are still extremely high and can not get heart rate under 120 p/m. “Dr. They were amazed I hadn't gone in to Cardiac Arrest. Graves' Disease - An Interesting Story By Dr Sandra Cabot One of my female patients aged in her late 30s was experiencing recurrent attacks of atrial fibrillation which necessitated her being admitted to … 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 watched this video already actually and appreciated the perspective. She didn't push RAI and recommended I try Propothyrocil (PTU) for a few months to see if remission was possible within two years.Over the next year, my health improved while taking the PTU. Remission is most likely within five years of diagnosis. I must not question that, as it won’t bring me to a better place. This season of my life will afford me the opportunity to learn more about the disease, the most common cause of hyperthyroidism. I completed the uptake scan (RAI 123) with the nuclear medicine doctor. “He loves everything and wants to do everything. He has handled having Graves’ disease with a maturity well beyond his 8 years, and his family remains cautiously optimistic remission is possible. What fun. 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. The mechanism of disease involves an … 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 truth is, if those symptoms had happened to a teenage girl, it wouldn’t be a leap to consider hyperthyroidism as a potential diagnosis. 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. He takes his medicine every morning in some applesauce. 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. Your advice is great. “He’s bouncing off the walls,” Kate says. (via Facebook)"I had first symptoms at 27 but not diagnosed until 40.... Because I'm not skinny. 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. Options for definitive treatment include either surgically removing of the thyroid (thyroidectomy) or destruction of the thyroid using radioactive iodine (radioactive iodine ablation). The right side of my thyroid was like three times the size of the left side. Graves' disease is an autoimmune disease that affects the thyroid gland. The initial step is to start a medication, which works by lowering the amount of thyroid hormone. The disease affects about 1 in 200 people. I could barely move or walk even a short distance because my body was in so much pain. 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! 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. “He called me at 7:30 Monday morning,” Kate says. Very. Not "looking" sick but feeling terrible...it's tough. 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 will look into these options! Hold control (command on a Mac) and press the + key as many times as necessary to increase the font size. 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. Keep your thoughts positive and your peace close. The more I researched, the more I linked Graves Disease … “He loves reading and loves math,” his mom says. It led me to have a thyroidectomy on October 8, 2018. I didnt turn bright neon green/yellow and none of my electronics sparked from nuclear contact. So, I submitted to the RAI treatment (131) at 15 mc, and didnt really have a reaction. I was living a healthier lifestyle by exercising more and eating healthier. © 2021 Graves' Disease & Thyroid Foundation. All those things started happening to Kade gradually over the spring and summer of 2015. Hyperthyroidism is a disease in which the thyroid gland makes more thyroid hormone than the body needs. “It’s busy around here, but a lot of fun,” Kate says. About 40% of people who stay on anti-thyroid meds in the US achieve remission, of that 40%, only about 5% stay in remission. The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone! For the last six months or so, Kade’s Graves’ disease has been under control and so have his symptoms. In almost a year that I've been on the medication and a few ultrasounds along the way, my levels have not decreased. 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 … The thought of RAI just didnt sit well with me this early on in the condition. In January of 2002, I was diagnosed with Graves disease, a 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. PTU has a black box warning and its not meant to be taken long-term at higher dosages. Five Years Later: Reflections and Celebrations of a Former Graves … If you are struggling with Graves Disease/Hyperthyroidism, I wish you the very best. … 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. Testing TSH Levels. I was diagnosed with Graves’ disease a few months after having a baby. Im finally stabilized and at a point where I feel pretty good or lets say I have found my new norm. My journey … I’m   fine”. 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. Pressures are normal. November 2015, I was diagnosed with Graves’   disease. Graves-Basedow disease is a medical disorder that may manifest several different conditions including hyperthyroidism (over activity of thyroid hormone production), infiltrative … Educating myself on thyroid disease, acknowledging, understanding and accepting the disease has helped me tremendously during the healing process both physically and mentally. Thanks for checking in, Rob! Graves' disease is an immune system disorder that results in the overproduction of thyroid hormones (hyperthyroidism). The boys stay busy with street hockey, basketball, soccer, flag football, karate, tennis and golf. Deciphering Scientific Studies: Join the "Journal Club"! This is the story of how I cured my Graves disease … Thyroid levels are now in control but eyes are red and hurt. Finally they diagnosed me as Parkinsons because tremors were beyond bad. 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