The Butterfly in my Throat : Empowerment

Nighttime yoga in pjs

The long awaited slump. 
Post-treatment, I was seeing a lot of progress in a short amount of time. For a few weeks in late February, I was feeling pretty tired and unmotivated, though it was nothing compared to the side effects of radiation. For the first time in my life, I had absolutely no appetite whatsoever. I had a feeling that my thyroid hormones had finally dipped under normal, so I played it safe and got some blood work done. To nobody's surprise, I was hypothyroid for the first time (since the one month of medication induced hypothyroidism in 2008).

I spoke with the endocrinologist's office and when they asked for my symptoms, they laughed saying, "You're clearly hypothyroid. Don't worry though, we'll get you all fixed up. You're not going to balloon or anything. You're not in danger. You don't even have to come to the office. We'll get you on a small dose of Synthroid (synthetic thyroid hormone) as soon as possible."

They explained that one of my thyroid hormones was just under the normal range and the other was in the low-normal range. Patients who are diagnosed with hyperthyroidism for a long time often suffer tremendously when their hormones dip to low-normal ranges. The symptoms can be very severe. I was warned of this, and the possibility that the hormones would drop so suddenly that I'd be slurring my words and forgetting my name. Thankfully, this was not the case. I was simply tired and didn't want to eat.

My thyroid stimulating hormone (TSH) was still suppressed, but this is typically normal for a few months. It takes months for TSH to regulate. *Quick, easy science lesson: Thyroid stimulating hormone is released by the pituitary gland in the brain and tells the thyroid whether it needs more hormone or less. When TSH is low, the pituitary gland is telling the thyroid to slow down production. When TSH is high, the pituitary gland is telling the thyroid that more hormone is needed. A patient with Graves' Disease has an antibody that mimics TSH. So, the antibody tricks the thyroid into thinking it needs to produce more hormone. Anyway, my TSH has been suppressed from day one of my diagnosis. It has never changed.

The relationship between the pituitary gland and an overactive thyroid. http://theawkwardyeti.com/tag/thyroid/

My endocrinologist's office sent me a packet with information on hypothyroidism and Synthroid (aka Levothyroxine). My doctor ordered a low dose of Synthroid (50mgs a day) for me and wanted to monitor my blood work after a few weeks. I was asked to stop taking heart medicine. I remember hanging up the phone and thinking, "Okay, the doctors didn't hit the sweet spot, Ill be on pills for the rest of my life. I have to be okay with this. This is for my future and my current health. You can do this." I had my moment of disappointment, then let it go. "I am healthy."

My Synthroid pills

I decided to eat a vegetarian diet temporarily while my metabolism was low, consuming less calories than normal. For a couple of weeks, I ate very small portions and I surprisingly didn't gain any weight from being hypothyroid for that short period of time.

I was instructed to take Synthroid as soon as I woke up in the morning with a big glass of water and wait half an hour to an hour before breakfast to allow it to absorb properly. I woke up so early every morning worrying that I had to take my pill. I obsessively took it and drank a bottle of water, then waited 90 minutes to 2 hours for breakfast. I knew that after time, I'd learn to get used to it. The hypothyroid symptoms slowly faded.

I met my now boyfriend in late February and we began our relationship in early March. I started going out of the house more, nearly every day. It was something I wasn't accustomed to at all, being so home-bodied and always so anxious about whether or not I would feel sick. A few times in the first couple of weeks, I would feel weak enough that our fun plans needed to be changed to something relaxing and closer to home. Slowly however, the anxiety dissipated and I was able to push through weakness and discomfort.

My "I'm finally healthy" vacation. 
My parents gave me a trip to Florida as a gift to celebrate my health and overcoming years of sickness. I was excited to have my Grandmother and cousin tag along. The 3 of us flew to Orlando and stayed with family. I had never been to Florida. I was finally healthy enough and I felt confident to travel. When I stepped off the plane and felt the heat and humidity, it was one of the happiest moments of my life. The half hour drive to my Great Uncle's house was beautiful, full of greenery, palm trees, and flowers.

The palm trees outside my Uncle's house

Our trip was 8 days long. The first thing on the list to do... DISNEY WORLD. OBVIOUSLY! My cousin and I went to Magic Kingdom. It literally was the most magical place. I felt like I was a 5 year old all day, wide-eyed and unbelievably happy. Not once did I think about my disease. I didn't think about anything all day except my desire to meet Mickey Mouse, which I did!

Disney World

The days after were spent enjoying time with family, eating a lot of food, shopping in Orlando, trying aerial yoga for the first time, heading to the lake at night with flashlights to look for alligators, participating in Paint Nite at a local bar, and going to the beach.

I enjoyed myself so much. The flight home was bumpy, but I felt refreshed, even stepping outside in the freezing cold. I felt ready to take on the world. I wanted a job, I wanted a life. This trip was the confirmation that my race was finished, and a new race was about to begin.

New tests.
I only felt good on Synthroid until about 2 weeks after my Florida trip. I had the strangest feeling that it was not the right medication. I did a small bit of research and found that many hypothyroid patients feel better with natural hormone treatments (like Armour Thyroid which contains sources of T4 AND T3 hormone replacement, unlike Synthroid which is just T4). When I had an appointment with my endocrinologist to discuss it, I went with boldness. I have experienced situations where doctors and specialists have bullied me into doing exactly what they prescribe, with no conversation. At first, my endocrinologist was tough, but then he relented. He spent a lot of time in my exam room, coming up with ideas. He got very quiet and pensive. He then sat at his computer and stared at my blood work results from the most recent and went back years in his files. "Your TSH is still suppressed and always has been suppressed from day one. Let's do nothing for awhile. Get off Synthroid. Let's wait to see if your TSH goes up and then we will put you on replacement hormone." He gave me a script to have another thyroid uptake and scan at the university hospital, just to see what was going on.

May's uptake results show hyperthyroidism

Radioactive scans of thyroid from May

I was pleased, despite the results of the thyroid uptake and scans. I got off Synthroid, and within a few days, I started to feel better. From then on, I've been feeling better and better.

Proof.
If I ever doubt that I'm healthy, the proof is in my amazingly eventful spring and summer.

During my spring and summer, I was in two nasty car accidents that I walked away from without a scratch, I received a promise ring from my boyfriend, I've been on overnight and day trips, I've visited planetariums, casinos, museums, explored wineries and hiking trails, spent time with friends, enjoyed food at new restaurants, celebrated by 28th birthday in Mystic, CT, been to weekly public yoga classes, practice acro yoga often, bike 3-4 times a week, and am currently planning future trips.

My best friend surprised me with tickets to see 'Lord of the Rings: the Fellowship of the Ring' at Lincoln Center in New York City, projected on a big screen with a full orchestra playing the score. Everyone who knows me, knows I love film music, and I always desired to be a film composer. After the show was over, my best friend and I met Howard Shore, the film composer himself. I met my idol!

Howard Shore and me

I went to New York City to participate in International Yoga Day. 15,000 people and I did a yoga practice in the middle of Times Square.

NYC International Yoga Day

In June, I went to an intense 3 day ashtanga yoga workshop led by the famous yogi, Kino McGregor. We learned about the yoga sutras in a lecture, had a two hour class on the ashtanga yoga primary series, a class on digging deep in our core to lift our bodies off the ground, and a class on inversions. It was the most challenging thing I've ever done to my body.

Me and Kino MacGregor

I've been seeing new places, doing new things, and I'm finally being spontaneous - something I never expected of myself. I have found a fabulous balance in my life, of which I am so proud. I keep getting excited to learn and experience new things, since this is truly the first time in 8 years that I am able to do anything. Perhaps it sounds like the rantings of a spoiled brat, but I've never been happier. I'm FINALLY healthy enough to live my life. I'm FINALLY healthy enough to enjoy myself.

I have discovered what is healthy for my body with my diet, my exercise, and my rest. I meet with a psychologist and a life coach to keep my mind healthy and to have accountability. I have a desire to be creative for the first time in years. I have a deeper passion for God and I want to be in His will, and do what is right.

Medical update. 
The last time I saw my endocrinologist, he walked into my exam room, and stared at me with a sarcastic and scornful look. He said nothing. I started giggling. I was sitting in one of the two chairs, he came over, and plopped next to me, sighing. In his thick Russian accent he whined, "I have no idea what to do with you!" We both laughed. He said, "I don't understand how 2 radioactive iodine treatments did not kill your thyroid gland. You have one of the most active glands I have ever seen and it must've been much larger than anyone expected. The treatments worked anatomically, because your thyroid is no longer enlarged, however it should have stopped producing too much hormone. I have asked other endocrinologists what to do, and they have no idea either. Are you feeling okay?"

I truly appreciated his vulnerability. He honestly had no idea what to do with me. It takes a lot of humility for a very highly rated and seasoned specialist to say, "In all of my years, I have never seen this before and I have no idea what to do." He actually cared about how I felt and was trying to come up with a solution for me. I told him, "If it is any consolation, I feel wonderful, so I owe you a big thank you." He apologized many, many times. He said, "If we do another radioactive iodine treatment, it will be enough for a thyroid cancer patient in total. It will throw you into severe hypothyroidism and you will not feel well. If you do surgery, it will do the same thing. I don't know what to do. Do you want to wait and see if anything changes?" I agreed.

I waited 6 weeks and did blood work. The results were abnormal. One hormone is in the normal range, and the other is too high. My TSH is still suppressed. I am technically hyperthyroid yet again. I had an appointment with my endocrinologist scheduled in late August but it was canceled so I could come to an emergency appointment this week. We need to figure out what to do.

Next steps. 
I am just as confused as my specialist. I am not sure why things have worked out this way. All I can say is that I am advocating for myself and the health that I am currently feeling. Why would I destroy this amazing feeling with radioactive treatment that makes me sick and tired for a month and a half OR with surgery that would require recovery and inevitable medication?

I feel good. I feel better than I have in nearly a decade. I have a healthy opinion of myself, striving always to be better. I love myself to the core. I am, in my mind, the pinnacle of fitness, the quintessence of wellness, and the epitome of health. It sounds pretentious, perhaps prideful, but everything I do, I do to ensure that I am healthy: mind and body. It is empowering.

I am ready for the next chapter. In this entire 8 year process, I have learned that whatever is going to happen is in God's hands. If He wants to heal my body, then so be it. If He doesn't, I will still worship Him and my life will no longer be on hold.

I know many people who have said in the midst of death and terrifying diseases like cancer and lupus disease, "It's in God's hands. I don't worry about whether or not I will be sick. If I'm sick every day for the rest of my life, I will still worship God, and I will be content." I always thought these people were lunatics. I never wanted to settle for a sick body. Now, I understand. Whatever happens, will happen, and I will be content (or at least try!) and I will still worship and thank my God every day.

"Not that I was ever in need, for I have learned how to be content with whatever I have. I know how to live on almost nothing or with everything. I have learned the secret of living in every situation, whether it is with a full stomach or empty, with plenty of little. For I can do everything through Christ, who gives me strength." Philippians 4:11-13 (NLT)

The Breakers Mansion, Newport RI. July 2015

Be blessed and be well,
J

The Butterfly in my Throat : Good things come to an end

A day at the beach. Summer 2014

The Greatest Summer. 
It was the happiest summer of my adult life up until that point. I was enjoying the company of friends, meeting people, making new friends, going out a few times a week, spending every day outside, getting stronger, and living a healthy life. I felt that I had a sense of adventure. I was doing things that I had never done before, simply because I stepped out. I was experiencing new, amazing things. 

Horseback riding. Summer 2014.

I was also job hunting and preparing for the coming autumn months, hoping that I'd be working by then. I even started to dream again. I envisioned myself in a cute apartment with a decent job, writing music in my free time, finishing my masters degree and becoming a yoga teacher. I felt I was on the brink of independence and freedom. 

I remember having a long chat with a friend of mine on the phone. He said, "Maybe you feel better and you're happier, but you actually are responding to me faster and better. It is like your brain is working to full capacity now!" I laughed and teared up. It was a wonderful thing to hear. Full body health!

Yoga practice. Summer 2014.

Once mid August rolled around, life got a little complicated. My Grandfather was getting very sick and was deteriorating quickly, my cat got injured and almost died, two infant kittens that my family rescued died, and I was struggling with the seemingly nonexistent future of my romantic relationship of nearly 3 years. Stress definitely gnawed at my family and I, but we managed. I had some wonderful support from dear friends and family. God was faithful. 

All good things must come to an end, I guess? 
With thyroid treatment, the goal is to destroy the gland enough where it cannot function on its own anymore. Daily synthetic thyroid hormone would be needed in that case. I expected this result from day one. I hoped that the doctors would hit the jackpot and my thyroid would be balanced; just enough where I wouldn't need medication every day for the rest of my life. Of course, that is a super rare situation. 

Destroying a hyperactive thyroid and treating it as a hypoactive thyroid is safer and apparently easier. There is less risk. (With hyperthyroidism, long term problems are always an issue. Heart problems, osteoporosis, issues with pregnancy, and long term antithyroid drugs cause a slew of other issues as well. There are no long term side effects of synthetic thyroid hormones). I was told that it could take a long time for my thyroid to finally become hypothyroid. It was 4 months and I did not have any symptoms of hypothyroidism yet. 

Early September rolled around. I felt good, but I thought that allergies were really plaguing me. I felt pretty tired, hazy, and a bit foggy. I also thought that my thyroid hormones were possibly dipping too low. The time for blood work testing came and a follow-up appointment with my endocrinologist. My heart rate was resting at 120bpm when they took my vitals at the appointment. My blood work results were reviewed. "You're hyperthyroid again."  What I wouldn't give for it to just have been allergies!

The treatment was not enough. The nuclear medicine doctors had not taken into account the size of my thyroid. It had metabolized the radioactive iodine much too quickly for it to have worked sufficiently. "You have to go back on an antithyroid medication and make a decision about whether to do radioactive iodine treatment again or have surgery to remove the gland." I remember my doctor said, "Smile! You look so upset. You're going to be okay. I'm sorry."

On the drive home, I didn't think about anything. I didn't feel sorry for myself. I didn't feel empowered. I felt nothing. I think I may have cried a little when I got home. I felt so defeated when I stopped at the local pharmacy to pick up my antithyroid medication again. I was on methimazole and a beta blocker again. Same pills from 5 months earlier. 

I thought that by 2015, I'd have a life. A job, an apartment, dreams fulfilled. All of it was on hold again.

Biking with my cousin (right)

Despite the news, I still had just enough energy to enjoy myself. I went to faires, spent time with friends, and still felt a sense of adventure. Anxiety tried to creep in, but everything I felt, I had felt before. I knew all of my symptoms well. I knew that I wasn't in danger. I tried my best to ignore them. I tried my best to enjoy myself. Treatment, although insufficient, was enough to make my life more comfortable. It had helped.

Me (right) sliding with my Mom (left) at a faire

Me (right) and a friend (second from right) at a Renaissance faire

Me (top left) with friends and family at an Apple Harvest Festival

Life Changing October.
All of my symptoms returned, but not to the same severity. My goiter returned, albeit not as large as before. My eyes bugged out, though they were not as prominent.  

Within a couple of weeks, my life changed entirely. I was having nightmares constantly and feeling deep panic and stress. One night, I woke after a nightmare with an intense feeling that I needed to ask God's forgiveness. In my frustration during all the years of disease, I had blamed Him many times. I said many things to Him out of anger. I felt a desire to be closer to Him. It was a very healing moment for me. 

After months of debating and feeling a divine push, I decided to end my romantic relationship of 3 years. A couple of days after, my Grandfather was put in hospice care. A week later, he passed away.

My Grandfather and me

I spent most of my autumn with my Grandmother, my family, and my best friend. I went on a few dates here and there, met a couple of new people, and spent more time out of the house. I decided to do another radioactive iodine treatment. 

I began to prepare myself. I started an ashtanga yoga practice (6 days a week) to challenge my body in new ways and build strength before my treatment inevitably wore me out. I was the strongest and most physically fit I had ever been up until that point. 

Preparations.
The treatment was to be done at a university hospital. (The last treatment was done at a local hospital). I needed to be on a low-iodine diet for 2 weeks and off my antithyroid medications for at least a week. I was scheduled for tests and scans. The treatment was scheduled for January 9. All of the preparations needed to happen during the week of Christmas and New Year's Eve. 

There are few things more frustrating than going on a low-iodine diet during the Christmas season. (Low-Iodine Diet) No egg yolks, no dairy, no salt, no seafood, no soy, no chocolate, etc... THERE IS SOY AND SALT IN LITERALLY EVERYTHING. My family prides themselves on making amazing European foods and desserts. Needless to say, I was miserable. However, I took the diet extremely seriously. I wanted this treatment to work. I bought only organic food and refused to eat anything that I did not cook myself. I remember spending the afternoon with my Grandmother one day. She tried to make me lunch and I kept refusing. She ended up making a salad but was mortified when she couldn't season it with salt. She even froze her homemade Christmas desserts for me to have when my diet was over. 

I made quick oats every morning for breakfast with banana, raw nuts, raisins, and honey. I ate a salad with poached egg whites for lunch, and quinoa or basmati rice, steamed vegetables, and sometimes I added a very small amount of organic chicken for dinner. I cooked a lot of food in vinegar to imitate saltiness. Consequently, the diet made me feel so good, but the level of deprivation was beyond irritating. Everyone around me was eating pastries, baklava, rice pudding, and cookies. I was mostly annoyed that I couldn't eat cheese, which is my guilty pleasure! 

I left this note on the fridge to remind me: 

My cousins and I took a spontaneous trip up to Boston a few days after Christmas, where we met up with some friends. I had to pack a backpack with a day's worth of food in it because I could not trust eating at restaurants. It is not recommended that one eats out on a low-iodine diet. I had a lovely time, but on the way home, I was so hungry that I HAD to stop at a gas station for something to eat. Thankfully, they had coconut chips with no salt! 

Me (bottom left), cousins, and friends in Boston

New Year's Eve. 
I was planning on taking a solo trip back up to Boston to celebrate New Year's Eve, but I was off my medications, and traveling made me really anxious. Although I was not feeling as uncomfortable and sick as I expected, I still felt so tired, worn out, and foggy. I felt too sick to drive long distances. I hoped to enjoy my New Year's Eve. The last one was spent sick in my pjs, crying, and writing goal lists. I needed something more. I needed a celebration to remind me that my life was going in a better direction. 

Two friends from Boston surprised me for New Years and came down to my neck of the woods, got a hotel, and we had a little personal party. We watched a funny movie, played a game, ate snacks (I had to bring myself raisins, unsalted nuts, and raw vegetables) and we watched the Times Square ball drop. I finally had a celebration! I was so amped up for 2015. 

Treatment.
My radioactive iodine treatment was quickly approaching. Before my first treatment, I had hoped that the doctors would find that super rare, sweet spot where I wouldn't need synthetic pills for the rest of my life. Come second treatment time, I wanted the doctors to nuke my thyroid so much that no piece of it existed. I really didn't want to do this again in the future and a single pill a day was fine with me. With hyperthyroidism, I took many supplements on top of my 5-6 prescribed pills a day just to manage symptoms. Melatonin to help me sleep, colostrum to help my immune system and joints, glucosamine chondroitin for joint pain, Zylet for dry, inflamed eyes, natural supplements for thyroid function... From all of that to one pill a day is a miracle. 

My pills & supplements. Photo from January 2015

The week of treatment, I headed up to the university hospital to take a small dose of radioactive iodine for tests. 4 hours later, I returned to the hospital to have a thyroid uptake done. (A thyroid uptake measures thyroid function). The next day, I returned to have a 24 hour thyroid uptake and to be scanned. The rules and procedures were followed very strictly at this hospital. I couldn't have any liquids brought into the exam rooms with me. I was asked to urinate before being seen by the doctors to eliminate any radioactivity in my bladder from showing up in the scans of my neck. Everything was so spelled out. I deeply appreciated all of this. I felt like I was in better hands.

January's uptake results showed a very hyperactive thyroid

Thyroid scans: Jan 2015

2 days after my scans, I was on my way to get my actual treatment dose. I went alone this time. Worlds were different from treatment day May 9, 2014 and treatment day January 9, 2015. I had less fear, less anxiety, a lot of support, so much peace, and I felt God's divine presence near me the entire time. I always held onto the reins so much with my disease. With treatments like this, where the outcome is not always known and the timing is always random, you have to live presently and let things happen. Let go of the control, let God do what He will, and just be. 

This time, the dose was bumped up to 15 millicuries (11 last time). I wasn't nervous, but once I was led into the nuclear medicine department's room next to the lab, I got a little jumpy. The technician gave me a brief lesson on radioactivity, and even used a Geiger counter to explain how far away I will have to stand from everyone around me for the few days following. Doctors and technicians filtered into this tiny room, shaking my hand, giving me the rundown of the days after treatment. Same as before: Suck on sour candy, drink a lot of fluids, stay an arm's length away from others, flush the toilet twice, do laundry separately, keep my toothbrush in my room, spit close to the drain, use disposable plates, utensils, and cups, keep on the low-iodine diet for 2-3 days longer. 

I was given gloves to wear and a bottle of water. The pill was brought out in a little tube. I remember shaking a little bit as all the doctors and technicians watched. I stared at the pill for a few seconds and then a technician said, "You need to take that now because you're exposing us all to radiation." I said another super fast prayer to myself and took it. I got a ton of good lucks after that and was sent home. 

I felt relieved. I was happy. I was ready for the next few days and prepared for the next month. 

Post treatment.
From the hospital, I drove to the store to pick up lemons and sour candy. That evening, I started to feel neck pains and I loved them: a sign that treatment was ALREADY working. I was perfectly pleased. 

Sucking on a lemon to stimulate saliva production

After a couple of days, the worst side effect I was feeling was exhaustion. I allowed myself to rest as much as possible. I did not feel the same level of discomfort that I had during the first post-treatment process, so I was happy. I was also able to get off of my deprivation diet. I remember eating a tortilla chip and being so disgusted by its saltiness. Everything was too salty for about 2 weeks. 

3 days after treatment, I took these photos for reference. My neck was so much smaller. My trachea could actually be seen for the first time, and in a side shot, one could barely see a goiter. 

Throughout January, I felt very tired, but had just enough energy for my home yoga practice 4-6 days a week. I went out with friends occasionally, but mostly, I just rested. By late January, I posted this photo to social media with this caption: 

"Suck it Graves Disease, I have a human sized neck."

In early February, I noticed that my neck moved when I swallowed liquid. It was the first time in 7 years. I actually took video because I was so excited!

Be blessed and be well,
J

The Butterfly in my Throat : Complicated Decisions

2014. 
My New Year's Eve was the same as it had been every year. I was alone, in my pajamas, sitting downstairs watching the Times Square ball drop on tv. I never felt well enough to do something on New Year's Eve. I pulled out a little notebook and began writing down things I wanted to change. 

I wrote a list of about 30 things, so I could look back at it on my next New Year's Eve and see that new things have happened. I wanted some affirmation that my life wasn't stagnant. I wanted to know that I wasn't under the governing power of my disease forever. 

I wanted to laugh more, I wanted to enjoy living a healthy lifestyle (even if my disease was technically keeping me from feeling healthy), I wanted to be a better friend, I wanted to pray more, I wanted to be a better person. At the end of the list, I wrote this, considering it already done: "2014 will be one of the best years you've ever had... And it will only get better!!!" 

So midnight came and went. I prayed. I teared up. I felt lonely. I felt disappointed that I wasn't out doing something fun, but I had my list of intentions for my New Year and welcomed the proactive feelings. 

Reboot. 
The first few days of my New Year were rough. I wasn't sleeping at all, and no amount of "sleepy time" teas, Benadryl, or melatonin were helping. I had committed to a healthier lifestyle, but I could barely stand up straight. I had been inactive for months because of the virus, but now that the symptoms had passed, I was physically exhausted. Since yoga had supported my body so much in early 2013, I looked for a January yoga program that could help usher in a healthier life, and help strengthen me, post virus. 

As mentioned in the previous post, I followed Yoga with Adriene and learned that she was releasing a yoga program for the new year called, "REBOOT: A 29 Day Yoga Experience." I fell in love with the title of the program. It was exactly what I was looking for. I faithfully stuck with the program for the month (skipping only a couple of days) and through the process, I learned how to nurture myself, especially with a disease that causes limitations. I was finally able to get control of my sleep cycle. I was feeling much stronger. I lost a little weight and for the first time ever, I was able to see actual defined muscle in my body.

I started incorporating more intermediate yoga routines into my life to challenge myself even more, physically. The practice helped me develop more discipline by focusing on my inhales and exhales, gave me a daily opportunity to let go of stress, taught me to stop allowing self-deprecating thoughts, humility by accepting where I was at the moment, and how to tend to my needs. Some days, I would not feel strong enough to handle a fiery practice and a gentle practice would suffice, or I would need a break altogether. It supported my new lifestyle and for the first time ever, I was able to take care of myself and stick with it. 

Diet & Exercise. 
My diet changed completely. For the first couple of months, I was experimenting with what worked for me and my body. After some time, I found a good balance of healthy grains, lean proteins, fruit, vegetables, legumes, minimal dairy, and I only used honey, maple syrup, and coconut palm sugar as added sugar. I avoided soy, processed foods, and gluten, however I allowed myself to occasionally enjoy a meal/dessert that didn't technically belong in my diet. It became my absolute pleasure to eat real, whole, healthy foods. I lost any desire to "cheat" or eat processed food. 

I began to exercise regularly, incorporating almost daily cardio into my life with some bodyweight toning videos. I lost a very small amount of weight, but not much. My endocrinologist informed me that I had been hyperthyroid for so long that my body wouldn't allow me to lose weight, as a way to keep me safe. Regardless, I was getting physically stronger. 

Longterm Damage. 
Despite feeling a bit better, my blood work was still the same. I still struggled with anxiety attacks, crazy headaches, intense brain fog, and I was still dosed up to the eyeballs on anti-thyroid medications. My doctor had enough. He began threatening to remove me from his care if I did not choose between a full thyroidectomy or radioactive iodine therapy. I asked about any other alternative treatments, but he gave me information from the American Thyroid Association and explained how most treatments that work for other diseases (for example, steroid treatment for Lupus) does not work for thyroid diseases. "We cannot reprogram these cells."

He explained the longterm damage of the disease. When he talked about the strain from hyperthyroidism on my heart, my eyes, my bone marrow, various other organs, I felt nervous. When he mentioned that the damage to my ovaries could prevent pregnancy, or cause my body to birth out a nearly microscopic baby, I panicked. I never realized how badly my disease could be affecting me longterm. 

The Decision.
The brain fog was brutal in the first few months of the new year. It was so common that I didn't even like leaving the house. I remember one time I was driving home and completely forgot where I was or how to get home. One morning, I got up and tried to talk to my Mom about something but stumbled over all of my words and couldn't remember what I was trying to say. Every healthy person has a "brain fart" or "senior moment," but that happened all day long, every single day. I remember talking to my Mom in that moment and breaking down into tears. "I can't take it anymore! I'm done! No more! I need treatment." 

I made an appointment with my endocrinologist. When he came into the exam room, guns were ablaze. He was already yelling at me before he sat down. I finally got a word in and was able to say, "I want treatment." His demeanor completely changed. The walls came down and he became my instant buddy. 

I am a voice teacher and a musician. Surgery was never an option in my mind, since the risk of vocal cord damage is possible. I did not want to take that chance. My doctor agreed to take surgery off the table for this reason. So, I decided to get radioactive iodine treatment. 

My doctor explained exactly what happens in this treatment...
The thyroid is the only part of the body that uses iodine. When the iodine is radioactive, the thyroid soaks up the iodine and the radioactivity damages the tissue. So the thyroid actually helps in destroying itself. The point is to kill off the thyroid gland and become hypothyroid, which is easier to treat  Once hypothyroid, the patient then takes synthetic thyroid hormones pills every day for life. It sounds easy enough, though the idea of taking daily pills made me uncomfortable. I knew I had to accept this for my future health. 

We set a date for treatment: Early May 2014.

Be blessed and be well,
J

The Butterfly in my Throat : Strength in Weakness

"I am glad to boast about my weaknesses, so that the power of Christ can work through me."  
2 Corinthians 12:9 

New Endocrinologist.

I was being treated by my primary care doctor for a short period of time. My monthly blood work results were getting a little better, but my symptoms kept coming and I wasn't feeling well. I was referred to a new endocrinologist. (Endo #4!) He practiced under the University of Connecticut. He had a world of knowledge, and was able to summon all kinds of thyroid research at the tip of a hat. After reading all of my records, he was not happy with my care and how I had refused treatment after all these years. We discussed all kinds of research and options. I was dosed up to the eyeballs on methimazole (50-60mgs daily), metoprolol (150mgs a day), and aspirin. 

Yoga and Strength.
I was seriously weak. I could not exercise or handle walking for long periods of time. I had a cane that I used occasionally.  As mentioned before, I had a problem lifting myself off chairs and walking up stairs. It took me 10 minutes to walk up a small flight of stairs and I was always so scared when I knelt on the ground and couldn't stand back up. 

In January of 2013, I found an AM/PM yoga DVD that my sister had purchased and I decided to give it a try, as a last resort. I started with the PM practice because it was gentle, and all on the floor. I remember the first time I finished the practice and I was resting in the final pose, tears streamed down my face. I did not even understand why I was crying. I was so intrigued by the practice, that I kept trying it, relying heavily on the PM practice. The AM practice was tougher for me and most of the postures were unattainable. It was an intense cardiovascular workout for me at the time, but I tried to do it every day. For every inhale that the instructor would take, I would take 5 inhales and exhales. Nevertheless, I did the practice nearly every day, feeling strength rise up inside my body. Every week, a new posture from the DVD became apart of my practice. After a month and a half, I felt I had nearly mastered the AM/PM practices and I was now bored with it. I was able to start moving better and walking upstairs became easier and easier. I started doing Pilates. I started doing low impact cardio workouts. I remember the day I was able to do a jumping jack; I ran into my parents' bedroom and showed them. 

I moved onto new yoga practices that I could find online, namely Yoga with Adriene. They challenged my body more and more, and I felt stronger than I had been in years. I stuck with the practice, constantly reading about postures and how they benefitted the body. I relied on my yoga practice to help relieve my pains, strengthen my body, help my flexibility, and ease my anxiety. I am so grateful for the practice.

Autumn Virus. 
The year was mostly uneventful. I was teaching voice lessons on and off all year as my only source of income, since I was still too weak and foggy for a legitimate job. I was very lethargic all summer, but pushed through it and still enjoyed it. I still practiced yoga, and occasionally worked out. I was able to walk normally again and walk up stairs again. I was able to pick myself up off the floor without pushing off or hanging onto anything. I still suffered with anxieties and symptoms, but it felt like my normal life. I was excited for my autumn. I craved all of the fall activities. I joined a choir, hoping to ease my way into more excitement and responsibility. I was able to attend a big faire in Massachusetts with my family, but a few days after the event, I came down with a little "cold." Soon, my throat started to hurt, the lymph nodes in my neck all swelled, and I was full blown 'sick as a dog.'

No treatment was making me feel better, no amount of stretching, no time in the sun, no tea... nothing. I finally went to an urgent care center where they discovered that I had mono, my white blood cells were low, and my liver and spleen were very enlarged. I was instructed to go to an emergency room. The doctors there were concerned that my anti-thyroid medications were the cause of my low white blood cells, so I was taken off of them, and needed a followup with my primary care doctor. After a week without my thyroid medicines, I woke up with heart palpitations and went back to the emergency room. My heart was jumping at a resting bpm of 125 and I was put back on the medications. 

Emergency Room - Oct 2013

I thought mono simply made a patient feel very tired. I was basically bed-ridden for two months. I had severe pains in my body, mostly in my legs, which was alleviated temporarily by compression socks. My throat, lips, and tongue swelled, my abdomen was always hurting from the enlarged spleen and liver. I lived on advil and tylenol to keep the fever and pains at bay. I lived on baby food. 

Breakdown.
I was so disappointed - I had to quit teaching lessons, and I quit the choir I had joined. I missed my entire autumn. I got sick when the leaves were green and started feeling better by the time everything was grey and snow was in the forecast. By early December, the virus was basically gone, but it had left me wretched. I was plagued with anxiety, 24 hours a day. I barely slept, I couldn't be left alone, I was afraid to drive anywhere, and I was physically exhausted and weak. 

I remember the night I was making Christmas postcards for my friends. I was up late, (since I was too afraid to sleep), sitting in the kitchen working. It was 3am. I began to feel the lethargy deep inside. I was so tired, so overwhelmed with anxiety and fear, and I began to cry. I felt hopeless. There was no light at the end of the tunnel in my mind. I broke down and prayed, "God, help me." Immediately, images of yoga, healthy food, sunlight, and other things appeared in my mind. I realized I had received an answer to prayer. Sure, my disease was going to do whatever it did best, but I had control over my food, my exercise, my sleep, my sunlight, etc...  I realized I had not laughed in a long time. That was going to change. 

Disease and sickness can and does make you wretched and strips you down completely. A person cannot rely on medication alone. Fight the good fight and resist the urge to slip into despair and darkness, where hope does not exist. 

This song became my prayer: 

"All my soul is troubled, All my will is worn,
Tired and discouraged, trampled on and torn,
Every breath a battle, Every step a war,
My heart, a broken vessel, 
This night an angry storm. 

When sadness crashes like an ocean,
when fear is deeper than the sea,
when I am swallowed by the darkness,
Will you come and anchor me?

I cannot see through this, 
Can you be my eyes?
I'm completely hopeless,
Can you shine a light?
I have no more strength left, 
Can you stand and fight?
I'm dying in this doubt,
Can you be my faith tonight?

Hold me still and hold me close,
Until it all passes away. 
I beg you not to let go,
All I really have to know
is that you are here and I am not alone." 
Lyrics © Warner/Chappell Music, Inc. 

Be blessed and be well,
J

The Butterfly in my Throat : The Search for a Natural Cure

Living on the edge.
I hated my options. I hated the idea that I had to get rid of my thyroid to be healthy. I didn't understand how destroying something in my body would make me feel healthier. I hated the idea of needing to be on replacement thyroid hormone pills for the rest of my life. Taking pills daily was already a chore that frustrated me greatly. It's nothing compared to the treatment of other diseases, but it drove me crazy. 

Every checkup with my doctor was met with scare tactics, that I now realize were all serious possibilities. My endocrinologist was concerned about atrial fibrillation and worried about thyroid storm. He mentioned that there was a small possibility that my thyroid could just burn out and stop producing so much hormone. I secretly hoped that this would happen, but it would take years, and now I know it would cause irreversible damage to my body. 

A New Specialist. 

My insurance changed and I switched endocrinologists again. This time, it was a scornful woman with a thick accent, who walked into my exam room for the first time and immediately started spouting off everything wrong with me. She started at the top of my head, pointing, "Your hair is thinning, you're missing 1/3 of your eyebrows, your skin is dry and broken out, your eyes are too bulgy, your lips are chapped, your neck is swollen, your heart is pounding, your blood pressure is high, you're not a healthy weight, your digestion probably is terrible right? Frequent bathroom trips I'm assuming? You're legs are red, and your ankles are really swollen."

She refused to prescribe medication, (not that I would take it anyway), and told me that I needed to choose between surgery or radioactive iodine. I ended the exam the same way I always did, "I'll think about it." I left the appointment and cried in the car the whole way home. I always cried after an appointment. I was always left with a sense of dread and failure. "I'm not getting better, and the future is bleak." 

These are the results from a blood test after that appointment:

Despite it all, I still fought to find my healthy body. A tiny bit of hope still lingered below the surface. 


The Search for a Natural Cure.
I had heard of other autoimmune diseases being cured naturally. Heck, I heard of cancer being healed naturally too. Why would a thyroid disease be beyond natural healing? I gathered so much information on autoimmunity, Graves’ Disease, and thyroid problems. I spent hours at my computer and in books trying to find the answer, praying always for a cure. 

With every story read about natural therapy healing a disease, my disdain for doctors grew. 'Money-hungry thieves,' I thought. I began to distrust them completely. I began to question the field of endocrinology completely: A patient with hyperthyroidism is treated by removing the thyroid or destroying the thyroid radioactively, leaving them to the mercy of synthetic thyroid pills for the rest of their life. A patient with hypothyroidism is treated with synthetic thyroid pills for the rest of their life. So to me, an endocrinologist was nothing more than a pill pusher. Each of my endocrinologists were unwilling to give me any other options or work with anything other than pills, looked down on me for even considering other options, and threatened to dismiss me from their care because of my views. 'This is my body,' I thought, 'and I'm not allowed to have any say in what happens to it.'

After I had found a decent amount of information, I sent it to my endocrinologist with a letter dismissing me from her care. She was infuriated by this, to say the least. I don't blame her. 

Becoming my own Doctor. 
I tried everything that I could think of and could afford. 

• I tried to avoid toxic chemicals, found in face washes and cleaners for example, choosing to make my own out of natural ingredients. 
• I sat outside in the direct morning sunlight for 15 minutes a day. 
• I tried to regulate my sleep cycle, but failed miserably. 
• I tried to take a vitamin B complex, but despite all of the different doses and brands, they all equally made me sick and lose my appetite. I instead opted for a whey protein that was loaded with vitamin B, but it was $65 for a small container. 
• I started exercising more frequently and got a gym membership. I kept my workouts very low-impact, walked on a treadmill, and did Pilates. I lost quite a bit of weight, but mostly from being in a hyperthyroid state. I remember checking my heart rate at the gym one day. An outrageous 200bpm. 
• I watched my diet, eating high in protein, researching paleolithic diets, avoiding caffeine, and making sure to eat many cruciferous vegetables (broccoli, cauliflower, brussels sprouts, collards, kale, cabbage) as I had read that they contained compound called 'isothiocyanates' which block an enzyme in the thyroid called 'TPO' (thyroid peroxidase). TPO attaches iodine to thyroid hormones to make them active. The thyroid is fueled by the iodine found in food. I started taking a cruciferous vegetable supplement as well, hoping it could potentially work as an antithyroid drug replacement. *NOTE: There has been no evidence to support that cruciferous vegetables decrease thyroid function.
• I had read of the benefits of iodine therapy, even for hyperthyroidism. After consulting with a naturopathic pharmacist, I started taking Prolamine Iodine. The first few times I took it, I felt temporarily drunk, but once I got used to it, I felt amazing. After a month however, I was feeling awful and almost toxic. The iodine was stimulating my thyroid so much, that it was probably producing more hormone than it was able to store.
• I took Thyrocsin, a complex that supports thyroid health. It contains ashwaganhda root, which I had read was beneficial to autoimmune disorders. Taking this supplement always made me feel faint and very foggy, however.
• I bought Vita-Fresh Life Greens, a green drink powder, which I tried so hard to drink but had to talk myself out of vomiting every time. It left me feeling very nauseous. 
• A friend bought me glyconutrient powder: a combination of fenugreek, turmeric, shiitake mushroom, kelp, whey protein, psyllium, lecithin, and bovine cartilage, said to help autoimmune disorders. It also made me sick to my stomach. 
• I took bovine colostrum supplements, a nutrient found in the first milking of cows that stimulate and support the immune system with disease fighting antibodies, proteins, carbs, fats, vitamins, and minerals. Colostrum was the only natural supplement that improved my blood work (specifically my ANA- antinuclear antibodies). *Read more about colostrum: The Colostrum Miracle: The Anti-Aging Super Food

*This post is not meant to discourage the use of any of these supplements. They are simply my experiences. 

Nothing was working.
My general practitioner was treating me, giving me options to try to beat the disease naturally: allowing me to try my supplements, recommending a vegetarian diet, and even acupuncture treatment (I did not try the latter for financial reasons). I was excited to be given options and to be listened to by a doctor. I'm grateful to her for this. Yes, I was happy, but my body felt so sensitive to every new supplement. Everything made me feel sick. My doctor was uncomfortable with my blood work which was still very abnormal. My heart rate was very high. I had an EKG again, and was put on aspirin to try and keep my heart safe. 

I was becoming very physically weak. Exercise was less and less of an option and I was prone to injuries more often. I developed hip problems and exacerbated a pre-existing knee problem. Walking up stairs became more and more difficult, to the point where I avoided going downstairs in my house. I could no longer push myself up off the floor, and I avoided sitting in some chairs for fear I wouldn't be able to get up. 

My stress level was uncontainable, which made coping all the worse. Between personal issues, my health, helping my best friend plan her wedding, having no money, and being unable to work, I was a ball of chaotic stress. I suffered with intense, powerful migraines and panic attacks. I was plagued with anxiety and depression. I remember the day my family sat me down and intervention-style asked me what was going on. I barely had any motivation to shower, I barely left my bedroom, I never made myself up, lived in my pjs most of the time, my bedroom was filthy and I stopped cleaning it. (Everyone who knows me knows well - Im a neat freak!) I stopped caring about everything. I also developed a stomach ulcer on top of everything else. 

I eventually made it back to the emergency room with an intense, terrifying migraine and panic attack. I was put on a beta-blocker (metoprolol) at the hospital and once I saw my doctor again, I was put back on methimazole and thankfully did not have the same reaction as I did last time (itchy all over). My doctor felt uncomfortable treating my disease and referred me to another endocrinologist.  

More than feeling old and exhausted, I felt like I failed. I was a girl in her mid-20s trapped in the body of an 80 year old woman. It was a miserable existence. I just wanted something good to happen. Something good to hang onto. I was always grasping at straws. I knew I needed medication and probably treatment, but I hoped for better things. I figured I'd make the best of it, and hope I would go back into remission, like it did before. I had a game plan. I could get back into remission and try to keep myself there naturally. Spoiler alert: it didn't work.

November 2012

Be blessed and be well,
J