The following stories were graciously shared via e-mail and social media to let other patients know that they are not alone! Would you like to share your own experience with Graves' disease, Hashimoto's thyroiditis, thyroid nodules, or other issues? E-mail us at firstname.lastname@example.org!
The Journey to Thyroid Surgery, contributed via email by Jamal Londry-Jackson
In November 2015, I was diagnosed with Graves’ disease. 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 kept telling myself, “I’ve been playing sports since I was 4 years old. I’m fine”. 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. 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. Thank goodness for Urgent Care facilities.
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’ve sustained injuries along the way that required surgeries, a collapsed lung, torn ACL and Meniscus. The latter, hindering my promising opportunity to play in the NFL. 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.
Adversity for most is perceived as a hindrance, however in my life, it has been a constant motivation. 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.
Just as being diagnosed with Graves’ disease, it is a health adversity, and one that I embrace. This season of my life will afford me the opportunity to learn more about the disease, the most common cause of hyperthyroidism. 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.
I was initially prescribed methimazole to see if my levels would decrease. In almost a year that I've been on the medication and a few ultrasounds along the way, my levels have not decreased. 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.
We all endure adversities, no one’s journey is easy. Graves’ disease is the 5th quarter in my game of life, and all I can do is win." – Jamal Londry-Jackson. Pictured above with his mother Kathryn, aka "Mama Kat".
Five Years Later: Reflections and Celebrations of a Former Graves Girl, contributed via email by Christina Aragon
I hope you are all staying safe and well during these challenging times. If you are struggling with Graves Disease/Hyperthyroidism, I wish you the very best. There is light and life at the end of the tunnel, and I hope you find my positive story uplifting. Feel free to contact me with any questions.
My story begins back in the Winter of 2011 at the age of 36. 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 felt like I had everything going for me. As you begin to read my story, it may initially sound like many other stories, but its not. 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. 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. After some extensive lab work, my general practitioner diagnosed me with Hyperthyroidism caused by Graves Disease (based on my autoimmune antibody blood work). I knew thyroid problems ran in my family, but mostly Hypothyroidism, as far as I could recall. 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. 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. The right side of my thyroid was like three times the size of the left side. I was also diagnosed with Thyroid Eye Disease. Fortunately, I didn't 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. Although none of these options seemed appealing to me, I started out taking Methimazole, accompanied by beta blockers and anti-anxiety medications. 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. This dosage is unheard of unless you are on the verge of a Thyroid Storm, which was the dark road I was headed towards. At this time, my doctors were really pushing for me to do RAI as soon as possible. The thought of RAI just didn't sit well with me this early on in the condition. 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 could barely move or walk even a short distance because my body was in so much pain. I limped when I walked and needed a cane as a walking aide. As much as I just wanted to get off the meds, I couldn't as I was warned against the possibility of going into Thyroid Storm. 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 was forced to resign at my job and pursue disability. Additionally, I lost my relationship as well as I felt I had nothing to give to anyone during my health crisis. 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 didn't feel ready for it. So, me and my poor painful body secretly searched for a new endocrinologist. By the time I met with my new endo, she was like a breath of fresh air. She didn't push RAI and recommended I try Propylthyrocil (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. I was living a healthier lifestyle by exercising more and eating healthier. Like I said, things were great for about a year and a half until we started to decrease my PTU. Upon decreasing my PTU, my Graves flared up with a vengeance. PTU has a black box warning and its not meant to be taken long-term at higher dosages. For the first time, I seriously started thinking of submitting to RAI. I completed the uptake scan (RAI 123) with the nuclear medicine doctor. We discovered that my TSH, T3 and anti-body count were so abnormally high, I was at risk for Thyroid Storm again. So, I submitted to the RAI treatment (131) at 15 mc, and didn't really have a reaction. I had nightmare stories about RAI and its side effects, but it felt like nothing to me. I didn't turn bright neon green/yellow and none of my electronics sparked from nuclear contact. 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. Im still on PTU and my thyroid levels are up and down. I could sense my doctors frustration, so she recommended another round of RAI. This idea wasn't sitting well with me so I went for a second opinion. I actually went back to my original endo with some slight embarrassment considering I didn't really leave on the best terms. They welcomed me back with open arms and ran some blood work. Interesting enough, I have developed Hashimoto's Disease and my liver enzymes are elevated (possibly due to the prolonged use of PTU). Now I will need block replacement therapy (which is complicated in itself) and I might have to get off of PTU, which I cant live without. My endo then surprised me and said based on my high antibody count and extremely large goiter, he didn't believe that another dose of RAI would be appropriate. In fact, if I did it again, I might be looking at doses in the amount given to thyroid cancer patients. He then recommended a Total Thyroidectomy surgery with one of the best endocrine surgeons in the state. The thought of this surgery just terrified me!! 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. Although it was my worst fear, I was comforted in the fact that I have exhausted all treatment options for this 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! 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. I ended up hiring my endos recommendation for a surgeon. I felt instantly comfortable with him and he had a ton of experience with complex cases of Graves Disease. 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. I knew then I needed to have the surgery as soon as possible despite my fear of going under the knife. 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. It was an instant success with no surgical complications and a pleasant hospital stay. I was placed on hormone replacement (Synthroid) right away. I had minimal scarring post-surgery. I would highly recommend my surgeon over and over again. 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. Armour Thyroid, etc.) to get stabilized. Im finally stabilized and at a point where I feel pretty good or lets say I have found my new norm. Although Ive gained about 10 lbs. since being thyroid less, and my weight still seems to fluctuate a bit. I think my biggest grip since being hypothyroid is how easily I tire sometimes as some days/nights are worse than others. I continue to eat well, exercise regularly, get plenty of rest and keep my stress levels down, which really helps. 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. Educating myself on thyroid disease, acknowledging, understanding and accepting the disease has helped me tremendously during the healing process both physically and mentally. 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. Here I am 5 years later as happy and healthy as can be. Here's to 5 years of being thyroidless and overcoming Graves Disease!!
My Diagnosis Story, contributed by Emma, age 17. Click here to read.
"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. I would either have a stroke or a heart attack from my heart going so fast."
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. I must not question that, as it won’t bring me to a better place."
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.”
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”. Imagine my shock! A disease, what are you talking about? Graves, who names something that?”
"Being diagnosed was actually a little bit of a relief after a year of hospital trips and being misdiagnosed as having anxiety. That is, until you google the disease and find a whole bunch of scary information and quickly realize the severity of a chronic illness. 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. After living with Graves for three years, I can see both sides of this very well. 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. Not "looking" sick but feeling terrible...it's tough. Very. 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). It could always be worse, I like to say.
Stress is a major trigger and managing that is my new life project. Keep your thoughts positive and your peace close. Be gentle with yourself. Best to us all..."
K.C.T. (via Facebook)
"I was diagnosed last year. Thyroid levels are now in control but eyes are red and hurt. Pressures are normal. Doc says to use drops and ointment. I am going thru the active inflammation phase of graves eye disease. It is a horrible experience!"
T.P.M. (via Facebook)
"I had first symptoms at 27 but not diagnosed until 40.... Because I'm not skinny. Finally they diagnosed me as Parkinsons because tremors were beyond bad. Then a new doctor ran some bloods just for interest. My levels where off the charts, specialist had never seen such high levels. They were amazed I hadn't gone in to Cardiac Arrest. 2 years on levels are still extremely high and can not get heart rate under 120 p/m. What fun. My symptoms are tremors and high heart rate, eyes are good but I'm not skinny, wouldn't mind the skinny bit. And sleep is very rare."
P.P. (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. Finally diagnosed at 21, took meds for a while until the heart palpitations and eye issues became overwhelming, then had RAI. 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'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. (via Facebook)