Brevard Teen Battles Thyroid Disorder

By Maggie Pedlow

Five years ago on my 18th birthday, I was administered a white and green pill from a vial that dissolved my entire thyroid.  Since that day my life has changed dramatically – I have spent most of the past five years thinking that change was for the worse, but I realize now that in many ways, it has been for the better.

The thyroid is the gland that regulates hormones and metabolism in the body. Losing this meant readjusting my entire physiological makeup and learning to listen to my body for signs of distress.

I was diagnosed with thyroid disorder in 2002, when I was just 17. I had quite suddenly begun having dizzy spells. I would go from feeling relatively normal to feeling like I was about to pass out, breaking into a cold sweat and shaking. Often, these episodes would be accompanied by feelings of extreme hunger and a headache followed if I didn’t eat right away.

After a few months of this, I realized something was terribly wrong. After visiting my primary care physician, who ordered a list of tests checking for various things including diabetes and thyroid disease, I was diagnosed with Graves Disease..

The U.S. Department of Health and Human Services defines Graves Disease as: A type of autoimmune disease that causes over-activity of the thyroid gland causing hyperthyroidism (overactive thyroid). When the thyroid is too active, it makes more thyroid hormones than the body needs. High levels of thyroid hormones can cause side effects such as weight loss, rapid heart rate and nervousness. Although Graves’ Disease tends to affect women between the ages of 20 and 40, it sometimes also occurs in infants, children, and the elderly. For more information, visit online at www.womenshealth.gov/faq/graves.htm.

Following my diagnosis in mid-December 2002, I was advised to visit an endocrinologist. The doctors didn’t seem to feel my condition was severe, and told me there was no rush, but that I should follow-up with an endocrinologist next time I was back in town visiting from college.

By the first week of February 2003, after my heart was racing non-stop for two days and serious chest pains, I was rushed to the hospital for examination. (Personnel at the hospital told me afterwards that I may have suffered a heart attack if I hadn’t come to the emergency room when I did.)

Because the hospital was crowded and there were no rooms to offer, I laid in the hallway on a stretcher hooked up to a heart monitor. I was prescribed medication to control my heart rate, which was 150 resting, and told to see an endocrinologist. This time there was no delay in making the appointment.

The endocrinologist and my primary doctor agreed I was a candidate for RAI (Radioactive Iodine) to destroy my thyroid.

One of the most difficult parts of this was identifying an endocrinologist who would listen to and respect me, not just treat me like a kid.

After ditching my “adult” endocrinologist – who initially suggested the RAI – I searched for and began seeing a pediatric endocrinologist, who approached everything differently and made my situation seem less scary.

Unfortunately, 17 is an age that is too old for a pediatrician, but still not quite old enough for doctors who see adults, in my opinion. Discovering and switching doctors led to improved changes in my treatment and office visit protocols, and ultimately convinced me to proceed with the RAI.

In the meantime, my situation seemed to be worsening. My heart would pound so hard if I tried to do anything which meant I was on bed rest most of the time – even on Valentines Day. 

In 2003, I had RAI and had to be isolated from everyone for fear of radiation contamination. This was a particularly frightening time for me. I was told I’d be radioactive for a week – which meant seclusion from those I love most. And for the record, no, I didn’t glow… but that would have been so cool!

After the radioactive pill, I was told that I should start to feel normal again within one year.  I have since realized that the word “normal” has a wide variety of meanings and that patients and doctors often don’t perceive “feeling normal” in the same way. 

For me, it took 2.5 years and four doctors to start feeling “normal” again.  That first “normal” period lasted a short six months, which was followed by weight gain of 30 pounds in the two months that followed. 

During this whole time, I often felt like I was trapped in someone else’s body.  Gaining 30 pounds in two months was just the start of mounting health effects from the Graves Disease. I also had hives over most of my body and I acquired Thyroid Eye Disease, where one eye bulges and looks larger than the other, making the “normal” eyelid appear to droop. 

I had ultra-sensitivity to heat and cold where my feet would be freezing but the top of my body was covered with sweat.

I had horrible joint pains, and muscle cramping and seizing that woke me in the middle of the night. I felt constantly tired but couldn’t sleep. I experienced water retention so bad that my fingers would burn. I had poor concentration, constant headache and permanent PMS symptoms. 

It is not uncommon for people with thyroid disease to develop other medical disorders. Recently, I was diagnosed with hypoglycemia as well, which means I have to monitor sugar levels in addition to my thyroid This is definitely not the greatest situation when holidays and birthdays come around.

Although I continue my struggle with Graves, there has been a lot of good that has come from the challenges.

In 2006, around the three year anniversary of my RAI, I decided to see if I could help others by developing an online forum.  The website debuted on a “My Space” page and within a month, I had heard from more than 200 people, mostly from those diagnosed as teens. 

A few months later, I officially founded a non-profit organization, Wings of Hope, and created the corresponding Wings of Hope for Adolescent Thyroid Awareness website, online at www.adolescentthyroid.com.

By starting Wings of Hope, I hoped to fill a void for those experiencing the special circumstances I encountered:  

When I was searching to find more information about Graves and thyroid disorders, there weren’t many support groups.  Those that did exist tended to be more for adults or existed to promote certain types of treatments.

None were directed at helping guide a teenager through this condition which drastically changes a life – FOREVER!  

By offering support, and realizing I could help, I gained the greatest gift of all.  It was then that I truly realized that this has not been for nothing. I started Wings of Hope to help others, but it’s helped me more then I ever thought! 

Wings of Hope allows me to reach a hand to those facing uncertainty, confusion, solitude and frustration about their condition.

My goal with Wings of Hope is to be able to encourage others to get involved, to understand, and to support people with thyroid disease. Hopefully, this support will one day include medical care and medication for those who can’t afford it; link patients to physicians who specialize in ATD; and fund research to help discover prevention and treatment options and alternatives to thyroid disease.

The online forum has produced many rewards. I’ve heard from moms, who have written to thank me for being there for their daughters. I’ve listened to victims and parents of thyroid disease cry out of fear and frustration and I’ve helped them celebrate when they no longer needed medication. I’ve had input from people across the country with the website design. These positives affirm every day that I’m heading down the right path.

My life has changed so much! It’s amazing sometimes to think that I was “that” other person. I have learned how to balance health, work, school, and having a life!  I have a pretty good handle on it all now but had to scale everything back to basics and then slowly add one thing at a time back to my schedule.

I started college in 2002 and finally will graduate in 2009. It has been a long battle, but I am winning.

I have grown and matured a lot, and while I have felt that the majority of the past five years has been a certain kind of torture, I know it also has helped make me into a better person. 

Maggie Pedlow graduated from Eau Gallie High School in 2002 and will earn a bachelor’s degree in Interior Design at Florida International University in Miami in 2009. She is currently working as an intern for International Design Concepts and one day hopes to focus on Green/Sustainable Design. For more information on Adolescent Thyroid Disorder, visit www.adolescentthyroid.com.