The Butterfly in my Throat : Radioactive Iodine Treatment

Photo from late March 2014

April. 

April (2014) was a nightmare. I was so busy. I had appointments with doctors 3 times a week (some appointments were unrelated to Graves and just happened to fall in the same month). I was so overwhelmed that month. I was so exhausted.

Committing to anything was challenging. My favorite yoga teacher (Yoga with Adriene mentioned in earlier blogposts) announced that she was coming to New York City in April. She set up a class and a meet and greet. I did not want to miss it, but the nagging discomfort of my symptoms and disease gnawed at me. I was on and off my medications the entire month, and I was so afraid of getting sick in the middle of New York City. With encouragement from Adriene's community of yogis on Facebook, I got the courage to go. It was my first public yoga class ever. I laid out my yoga mat in the back of the studio and in the first posture, we were instructed to lie flat on our backs. My entire body went completely numb because I was so full of anxiety. Once the class started, I was able to find ease and comfort. I enjoyed my time so much! I met with Adriene and some fellow yogis. Of course, once I returned to the car, I got a terrible headache and felt sick. Nevertheless, this event was a remarkable beginning to building my confidence and fighting through the symptoms of my disease. 

April 13, 2014. Yoga with Adriene meetup in NYC

"The breeze of grace is always blowing - catch that breeze J!"

Earlier in the year, I was feeling motivated and in an effort to get the ball rolling in my life, I joined a local choir, despite feeling sick. Our big performance was at the end of April. Rehearsals were a few times a week and on weekends. I remember feeling slightly uncomfortable and full of anxiety every week, but I stuck with it hoping that it would help prepare me for a real life and real responsibilities. On the day of the concert, I was feeling perfectly content until I stood on stage and the first few measures of the music started. Immediate panic rose up in me from nowhere, it seemed. Instead of reveling in all the months of hard work for this final, beautiful performance, I shifted uncomfortably in the risers talking myself out of jumping off the stage and running to my car. Through prayer and lots of deep breathing, I managed to make it though the performance. I left in such a hurry and was so relieved to make it home. It felt like such a waste. I didn't even enjoy it. This was my life. I never enjoyed anything.

Photo of goiter from April

Graves' Disease eyes from April

Tests and Scans. 

I needed a thyroid ultrasound, a thyroid uptake and a scan. To get an accurate result, I was taken off of my medications for at least a week. I remembered how sick I was in the fall after being off my medications for a week. My heart was jumping and racing. I was not looking forward to this. 

From 50mgs of Methimazole a day to nothing: I was feeling it. I couldn't think straight or focus well. I was quite despondent, nervous, easily startled, and full of anxiety. I always felt under the weather and achy. I was getting intense mood swings. I would be perfectly content and within seconds, be full of screaming tears and self destruction. One night, I was reading and noticed that I was struggling to see straight. I read and reread the same paragraph 10 times. Then, I started feeling that something was not "right." Within 20 minutes, I had a full blown migraine complete with vision loss, confusion, slurred speech, tremors, anxiety, loss of feeling all over my face and arms, and of course, the worst pain radiating through my head. Like a small child, I slept in bed with my parents that night. I was scared.

Last Methimazole pills before treatment

My best friend came with me to the hospital for my tests. I did my ultrasound. It showed a very large thyroid with good blood circulation. I also did my thyroid uptake and scan. I took a small dose of radioactive iodine and the next day, the amount of radiation in the gland was measured. If the gland soaked up a large amount of radioactive iodine, then it was severely hyperthyroid and only a small dose of radioactive iodine treatment was needed. The logic is that the thyroid works with the treatment. The faster it metabolizes the iodine, the better the radiation will be soaked up, destroying thyroid cells. My thyroid had soaked up a lot of the radioactive iodine according to the nuclear medicine doctors, so I wasn’t required to take a large dose for therapy; only 11 millicuries. (For reference, thyroid cancer patients are often given around 150 mCi). I was given a radioactive tracer shot, with some terrifyingly orange liquid inside and was scanned. The scans showed an abnormally large gland. I was scheduled for radioactive iodine treatment a few days later.

Thyroid uptake: 83% and scans from April 2014

Here is a photo for comparisons: 

Source: http://fitsweb.uchc.edu/student/selectives/Luzietti/Thyroid_diagnostics.htm

Treatment day.

May 9, 2014. I woke up feeling a lightness about my decision. I was somewhat nervous, but felt like I had made the right decision. I dragged my entire family to the hospital with me for support. The pill was waiting for me in a little cup. I took a little photo of it. In my spirit, I said the fastest prayer of my life and took the pill. No going back.

My Radioactive Iodine Treatment Pill 

After the very short hospital trip, I asked my family if we could go out to eat. It was a very welcome calorie packed, greasy cheeseburger mess that I enjoyed immensely. It was followed with ice cream. In my heart, it was a celebration. I felt that I finally had a future. I finally felt that I had made the appropriate decision for my health. 

The few days after... 

I was told to drink a lot of liquids, suck on a lot of popsicles, and eat sour candy to stimulate saliva production for the next few days. This was to prevent any damage to the salivary glands from the radiation. I had to stay over an arm’s length away from everyone for 3-4 days, flush the toilet twice, spit as close to the drain as possible after brushing teeth, keep my toothbrush in my bedroom, only use disposable cups, plates, and utensils, and do my laundry separate from the rest of the family. 

My family surprised me with this little sign on my bedroom door

A day after treatment, I began to feel pains in my neck. They were both dull and shooting pains, but not enough to warrant any OTC painkillers. I had only one passing moment of regret: I had done something that I could not reverse. The moment was fleeting and I got over it quickly. My decision was true and healthy. 

After 2 days, I was starting to feel very strange. I could not think straight and I could barely leave my bed. I’ve never felt so internally exhausted in my life. I remember going with my family to the local greenhouse to buy flowers for Mother’s Day simply because I was too afraid to be left alone at home. I felt like I was walking around that greenhouse like a zombie. I slowly pressed forward with no motivation, spacing out, eyes glazed over, feeling like I just finished a marathon. There was not a single thought in my mind that would complete itself, except for, “I think I’m going to pass out.” That was lowest point of the post-treatment process. 

In the days following, I had moments of darkness and discomfort, but I knew it was part of the process. I had hope that healing was coming soon. I wrote this in one of those moments: 

“When you feel sick and miserable, it’s hard to see the light at the end of the tunnel. It’s hard to feel like this is the homestretch. It’s almost over... just a little more time. After 7 years, you’d think a couple more months wouldn’t feel like a difficult, seemingly impossible task. Right now, I feel very in the present moment - something for which people strive. I’m just too tired to think beyond the headache, the fogginess, the general malaise, the weakness, the lethargy, the neck pain.” 

Following up with my doctor 5 days after treatment. He said that progress was starting to show already.

A week later... 

I had planned on having a tag sale to sell some old, unnecessary things the week after treatment. For a couple of days, I went through every closet, the attic, and the garage. I thought I was being foolish, but I had just enough energy to gather all the appropriate items. On tag sale day, I was outside from early morning to late afternoon, and had no trouble with fatigue. I got so sunburnt for the first time in years that day. Sunburns and tans were something I rarely experienced while on antithyroid medications. I was tomato red, but I actually welcomed it! It was part of the evidence I needed to see that my body was working properly. 

A month later... 

I was starting to gain some more energy. I was starting to exercise more, I was eating clean, and I was enjoying my newly discovered health. I was losing a healthy amount of weight for the first time in years. I got a phone call one day in June that my T3 and T4 hormones were in the normal range. TSH (thyroid stimulating hormone) was still suppressed, but it was expected since it takes many months for TSH levels to change. (Here is some more information to learn how the thyroid hormones work: http://www.endocrineweb.com/conditions/thyroid/how-your-thyroid-works) It was a wonderful phone call  with happy news. I danced around my room that afternoon and posted this collage photo to social media: 

Celebrating my blood work results!

Two months later... 

My neck was slightly smaller, my trachea was visible for the first time in 7 years, and my eyes did not bulge as much as they did months before. It was not as dramatic of a change as I had hoped for, but change was still evident and I did not complain. I was happy. I was not on any medications. I felt amazing and strong. I was exercising often, I was doing intermediate power yoga practices daily, I was eating so healthy, and even was talking with a life coach weekly about how to honor my needs and how to start my life again. 

July 2014. Worlds different from the late March photo above!

On July 14, I had an appointment with my specialist. He walked into my exam room, stared at me with a look of pride for a moment and said, “So I bet you feel good, huh? You listened to this old man! I TOLD you the treatment would work! Soooooo... how’s life?” In his examination, he said, “You are one healthy girl.” He listened to my heart and said, “Now, that is music. It’s music.” It was the happiest doctor's appointment of my life. I was so blessed and so full of hope. I felt my life was finally beginning. 

Summer yoga practice - getting stronger every day!

Be blessed and be well, 

J