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 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.
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 didnt 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 couldnt 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 didnt 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 took me off the Methamizole and didnt push RAI. She 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. I was living a healthier lifestyle by exercising more, eating healthier and picked up on some holistic remedies along the way. 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 didnt really have a reaction. I heard nightmare stories about RAI and its side effects, but it felt like nothing to me. I didn’t turn me 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. I’m 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 didnt really leave on the best terms. They welcomed me back with open arms and ran some blood work. Interesting enough, I have developed Hashimotos 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 didnt 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 in March of 2015.
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.
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 gripe 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 I’m at alive and healthy thank be to God.
Here I am 5 years later as happy and healthy as can be. Cheers to 5 years of being thyroidless and overcoming Graves Disease!!
One Response to Five Years Later: Reflections and Celebrations of a Former Graves Girl
Congrats on the strength you had coming this far in your battle! I also have Graves and associated TED- and it’s such a help coming across personal stories from people who have lived this, vs. just docs.
How did your thyroid removal affect your eyes? Have you had a hard time with weight management after surgery? And how long after surgery did you feel like yourself again?