I wanted to share my journey with Graves’ Disease.
This will be a several part series since my journey spans over 3 years.
Here is my story.
When I was in nursing school in 2005, I had become 108 lbs. & was very frail looking. My doctor thought she felt some thyroid enlargement, so she ordered a thyroid panel & an ultrasound. Everything came back within normal limits, so we just assumed the weight loss was from stress of nursing school & working a full-time job as a pharmacy technician in a crazy busy retail pharmacy.
Fast forward to my pregnancy confirmation appointment in May 2010. My OB thought she felt some thyroid enlargement & requested I make an appointment with a primary care physician to have labs ordered. Since I didn’t have any health issues that required maintenance & was rarely sick, I did not have one. So I made an appointment with a local recommended physician for an exam. They drew a thyroid panel in the office & informed me that if the results came back abnormal, that they would start me on thyroid medication & I would need to see an endocrinologist since I was pregnant.
The results came back & they were not what anyone was expecting. My thyroid panel was 7 times higher than the normal range. This CHANGED EVERYTHING. I went in for a follow-up visit & my heart rate was elevated. She prescribed a beta-blocker, but all of a sudden, the primary care physician did not feel comfortable starting an 8 week pregnant woman on ANY thyroid medication until I was evaluated by an endocrinologist. As a medical professional, I understood & appreciated her wanting to rely on an expert for treatment, until she REFUSED to start me on the medication she promised. After we found out there was a TWO WEEK wait to see the endocrinologist who REFUSED to start me on any medication until I was seen, she still wasn’t budging, so I went to the pharmacy to fill my prescription afraid & prepared myself for the longest 2 weeks of my life.
When I arrived home, I began taking the beta-blocker she prescribed for my rapid heart rate. Within the hour, I had broken out in a rash & my tongue began to swell. I knew to take a Benadryl but being pregnant I didn’t want to chance anything, so I called my primary care physician. She wanted me to go the emergency room. GREAT. I had never been allergic to any medication in my life & now I was about to have to sit in an emergency room for hours.
While in the emergency room, my vitals were checked & they just monitored me for additional symptoms. It’s amazing to me how people react once they find out you’re pregnant. All of a sudden you are leper that no one feels comfortable treating. I get it. Trust me. In this sue happy world we live in, I don’t blame them because they’re automatically dealing with two cases instead of one, but it doesn’t make it any less frustrating when you are on the patient side of it. Since I wasn’t experiencing any additional symptoms, I was sent home & called my primary care physician.
She called in a different beta-blocker since my heart rate was still high. I waited until the next day to start that medication. Once again, I broke out in a rash, took a Benadryl & opted not to call the doctor because I was NOT sitting in the emergency room again. It was beyond clear that I was allergic to beta-blockers. Period. So it was back to waiting on the endocrinologist appointment.
That weekend, I began having tremors in my hands. A few days later, I woke up with bed shaking. It wasn’t an earthquake, it was ME shaking the bed. At first I thought I was having a seizure, but since I was completely with it mentally, I knew my tremors had just gotten much, much worse. On top of the tremors, my heart rate was at 120 in a dead sleep. Try sleeping when you feel like you’re running a marathon, not easy. I was exasperated at this point. I couldn’t get into the endocrinologist, it was clear my primary wasn’t going to do anything, the emergency room physicians were not going to do anything, so my husband & I made the decision to see a physician he had personal rapport with at the local urgent care. Since she just left her private practice of many years, he knew she would do what was right.
When I arrived at urgent care, they hooked me up to an EKG just to make sure I wasn’t having any arrhythmias. As I’m bouncing on the exam table & shaking uncontrollably, they read the strips & let me know that I’m fine just have a rapid heart rate. I described my ordeal from the beginning & BEGGED for PTU. It was plain to see she was uncomfortable but she trusted my husband as a pharmacist, so she prescribed the medication. We knew it would take a few weeks for the medication to start working but I was already closer to having my symptoms resolved now. As I sat trembling in the car as my husband filled my prescription, I broke down. I have never been so terrified of anything in my life. I prayed & prayed. Prayed for my unborn child, patience & wisdom of my physicians. It was all up to God now.
A week later, my endocrinologist appointment FINALLY arrived. I was SO angry when I sitting in the waiting room until I saw the look on the staff’s faces. They were a BUSY office. They were working as hard as they could take care of everyone. I overheard a patient saying that it took them months to get an appointment, so that I was able to be seen within 2 weeks was actually a BLESSING. When I finally saw my endocrinologist, he was floored by my lab results & immediately TRIPLED my PTU dose. After reviewing everything, he ordered additional tests but told me he was 99.9% positive that I had Graves’ Disease.
*Thunder Crack* Graves’ Disease? Graves’ Disease!! Immediately I flashed back to nursing school & remembered thinking that if I had a thyroid disorder, that’s the one I would want because you lose weight. Stupid, stupid, stupid thought Chania. Then all I could picture was the photo similar to the one below. CRAP! I don’t know why I didn’t think of it before! I must have been in denial, but either way, I FINALLY had a diagnosis!
So what is Graves’ Disease? According to GDATF.org, it is an autoimmune disease that is the most common cause of hyperthyroidism, which causes the thyroid gland to make more thyroid than the body needs. This can result in increased heartbeat, muscle weakness, disturbed sleep, irritability, insomnia, hair loss, hyperactivity, weight loss, heat intolerance, excessive sweating, diarrhea, anxiety, depression, goiter, non-pitting edema (swelling) & exophthalmos (protuberance of one or both eyes) among other symptoms. About 10 million people suffer from Graves’ Disease, primarily women, who are 5 to 10 times more likely to be diagnosed with the condition than men.
I had all the symptoms above except for the insomnia, sweating, diarrhea, depression, goiter, edema & exophthalmos. Being pregnant, I was only allowed to take PTU because the normal drug of choice, Methimazole, can cause rare defects, especially during first trimester exposure. Slowly but surely, my symptoms subsided & I began to feel better. I was still a nervous wreck because at the time, there was barely any information online about Graves’ Disease during pregnancy. Most people are lucky enough to be diagnosed before or after they start their families. Typical me. Always doing things the hard way. For the next 9 months, I had monthly lab work & 3 different physicians I saw on a regular basis {my OB, Endocrinologist & High-Risk OB}.
So how was all of this thyroid hurricane going to affect my little peanut? I spent countless hours online trying to find answers & what I found horrified me. The PTU I was taking can have negative effects on the baby as well. Research has shown that they can be less severe. I was in between a rock and a hard place. Don’t treat, a baby that more than likely wouldn’t survive. Treat, still run the risk of deformities. If my daughter was born without any deformities, she still ran the risk of being premature, low birth-weight, failure to thrive & experience withdrawal/colic symptoms. Being a NICU nurse, I knew how to handle those things with other people’s children. Those were OTHER people’s children, not MY first-born. I was an emotional wreck. I prayed daily that I would have a healthy child. If it wasn’t in the plan for me to have a healthy child, please, please, PLEASE Lord grant me the strength, courage, patience & wisdom to take care of a child with special needs. I still felt like I was asking SO much.
Other than a brief scare with contractions at 24 weeks, the rest of the pregnancy went smoothly. I was able to decrease my medication dosage throughout my pregnancy. I had no choice but to take it as easy as possible because I had ZERO energy the entire pregnancy. When I craved a cheeseburger, I ate one. Not because I had the “I’m pregnant & I can eat whatever I want” mentality, but I knew I wanted to give my daughter as many extra ounces as I could. Three days before my due date at 9:56 p.m., my healthy 9 lb. 4 oz. miracle princess was born. Yes, you read that right. Just a few days earlier, the ultrasound technician estimated she would be about 7 lb. which was a positive, since they were expecting her to be 5 lb. or less at birth because of the Graves’ Disease. She was already beating odds. She didn’t cry when she was born (which is usually a cause for alarm) but she was just too busy checking things out. I remember being STARVED after pounding italian ice & broth all day, so my husband went to get food for us. It was just me & my miracle. I looked her over from head to toe at least a thousand times to make sure nothing was missing. I was just waiting for SOMETHING, ANYTHING to go wrong, but it never did.
They ran thyroid panels on her each day, which resulted in her staying in the hospital an additional night. We chose to go home since the hospital beds were SO uncomfortable. It was strange coming home without a baby, but I knew it was in her best interest for her to be monitored & for us to be well rested for all the information that was going to be coming at us from the Pediatric Endocrinologist the next day. When they discharged her from the hospital, we went to the Pediatric Endocrinologist where we received some very disturbing news. Our daughter’s journey with Graves’ Disease wasn’t over yet.
