Today’s post is a departure from the topics I usually write about. I’m sharing our family’s experience with childhood illness, diagnosis and treatment in the hope that other parents who notice some changes with their child and have a hunch that “something is off” will trust their gut and investigate. Our fifteen-year old daughter, Erin was diagnosed with an overactive thyroid or hyperthyroidism when she was 11. Hyperthyroidism means that the thyroid gland, a butterfly shaped gland located in the front of the neck, produces too much of the two primary hormones it secretes, T4 and T3. A properly functioning thyroid is important for normal growth and development. Too much thyroid hormone can speed up the heart’s rate (palpitations), raise blood pressure, cause nervousness, fidgeting, anxiety, tiredness, moodiness, irritability, changes in weight, irregular periods, frequent bouts of digestive upset and diarrhea and an inability to tolerate exercise and heat. The condition can negatively affect school performance, peer and other relationships and full participation in activities.[1]
Like 95 percent of hyperthyroidism cases, Erin’s is caused by Graves’ disease, an autoimmune disorder in which the body produces antibodies that cause the thyroid to overproduce hormones. Graves’ disease is more common in families which have other autoimmune disorders such as Type 1 diabetes. There is a history of thyroid conditions in my mom’s family, notably my grandmother. It is estimated that Graves’ disease affects 2-3% of the U.S. population. It most often strikes middle-aged women. Famous women including Missy Elliott, Sia, Wendy Williams and the late first lady Barbara Bush have/had Graves’ disease. Graves’ disease is far less common in children with estimates suggesting 1 in 10,000 children has the disease.
While the above is “textbook” information that I’ve learned about hyperthyroidism due to Graves’ disease, our experience of Graves’ with Erin is anything but textbook. Erin was in elementary school, maybe 7 or 8, when suddenly almost like the flip of a switch, her appetite increased tremendously and so did her food intake. She gained 40 lbs. in one year. I discussed the sudden onset of Erin’s increased appetite with her pediatrician, but initially no diagnostic tests were ordered. Erin’s physician counseled her to make healthy food choices. I didn’t think that was the issue as Erin would eat healthy food including fruits and vegetables; it was more about quantity and an unexplainable insatiable appetite. But I let it go thinking we’d wait and see if things changed. If her physician didn’t think any testing was warranted, maybe I was making too much of this?
Time marched on and other seemingly unrelated changes emerged. Erin who is an upbeat, athletic kid began to complain about feeling tired. Her coaches noticed that she was slower moving up and down the basketball court, but we thought it might be due to her weight gain and being out of shape. I had a nagging feeling that something just wasn’t right, but I didn’t know what. Erin has always been a hard worker and that has never changed, but it seemed that it took her longer to learn new skills during this time. She also seemed to tire more quickly when doing homework. I hated seeing her struggle and worked with her on reading, vocabulary, spelling and other subjects. I knew she was trying but it seemed to me there was something blocking or hampering her efforts.
Next, Erin began experiencing frequent upset stomachs. As I had a stomach ulcer at age 6, I was concerned that perhaps she had an ulcer. But as quickly as she’d complain of an upset stomach and cramping, it would go away. Sometimes days would go by without further incident, which wasn’t at all my experience with an ulcer. But soon enough the frequency of gastrointestinal issues caused Erin to begin missing school. We wondered if anything was going on in school with her teachers or Erin’s friends, but after checking into those, it didn’t appear so.
I was more and more convinced something physical was going on. One fall day of Erin’s 6th grade year after I kept Erin home because of stomach upset and diarrhea, I called our pediatrician’s office, discussed our concerns with a nurse, and made an appointment. Erin’s pediatrician listened carefully to my description of Erin’s symptoms and asked Erin lots of question. She ordered blood tests. I remember distinctly that Erin’s appointment was on a Friday. Saturday morning, her pediatrician called and said, “You were right; something is wrong.” She went on to say that Erin’s thyroid hormones were dangerously high.
We had to wait months for an appointment with a pediatric endocrinologist. At Erin’s first endocrinology appointment, her T3 and T4 hormone levels were even higher. Her pulse and blood pressure were elevated, which remained almost a constant during her early stages of treatment. Her frequent bouts with diarrhea, tiredness, and struggles with homework were caused by her body’s systems being in high gear all the time. Erin was diagnosed with hyperthyroidism at her first appointment. Her condition was treated immediately with high doses of medication that would drop her hormone levels from dangerously elevated levels. Erin was also prescribed beta blockers to protect her heart from too much thyroid hormone. After many months of frequent blood tests, medication adjustments and regular appointments with her endocrinologist, Erin finally had stable thyroid levels. Once Erin’s thyroid hormone levels were brought within the normal range, she began to lose weight. This is not typical for a patient with Graves’ disease as bringing thyroid hormones to normal levels drops the body’s systems from high gear which can result in some weight gain. Her other symptoms including fatigue and gastrointestinal issues were lessening.
About 25 percent of people with Graves’ disease remain in remission after their initial episode is brought under control and stabilized for a period with medication. About two years from Erin’s first appointment with her endocrinologist, she was taken off medication to see if her body would self-regulate. The first three months seemed to go ok. At first, we asked Erin every day how she was feeling and went through a checklist of symptoms. That got old for Erin quickly, so we laid off some reminding Erin to let us know if she experienced palpitations, tiredness, stomach upset or any other unusual symptoms. Erin and I were sitting at the kitchen table one cold January night about four months after she was removed from medication, when she told me that her heart was beating rapidly and that she had felt winded just walking up stairs that day. The next morning, I called her endocrinologist and took her for rush blood work. By that afternoon, we had confirmation that her thyroid hormone levels were again dangerously elevated. High does of medication were started immediately. Erin was once again placed on beta blockers. Her activities were limited so as not to raise her already elevated heart rate. Teachers and staff at Erin’s school, the school nurses in particular, kept an eye on her. The nurses took her blood pressure and pulse twice a day and were great about keeping us informed of the readings and their observations.
In Erin’s next appointment with her endocrinologist, we discussed definitive treatment options for Erin’s condition as the self-regulation test failed. There are two definitive treatment for Graves’, radioactive iodine (RAI) and surgery with the first being much more frequently used. Erin’s endocrinologist indicated that RAI was the best option for her. After a day of pre-procedure testing to determine the appropriate dose of RAI, we returned to the Penn State Hershey Medical Center the following day for Erin to receive the RAI, which is a “cocktail” that the patient drinks. Erin drank the mixture and we immediately needed to leave the hospital as she was radioactive. For five days, Erin was pretty much confined to her room. She had a bathroom to herself and needed to remain several feet away from all of us and our dog, Bogey. She handled the whole thing quite well. It took about 10 months for Erin’s hormone numbers to bottom out. Now her thyroid is underactive, and she takes Synthroid daily to bring her hormones within the normal range. She will take this medication daily for life. She’s lost 25 lbs. in the two-years since her RAI treatment with no plan or effort. Her endocrinologist was concerned about this level of weight loss which is not at all typical with the RAI treatment, but then again Erin’s symptoms are not those most often seen. After further investigation, it seems that the weight loss is entirely due to her thyroid hormone being brought under control. Erin is healthy, feels well, is doing great academically and fully participating in sports and other activities she enjoys.
I’ve provided lots of detail here, maybe too much, but I’ve done so hoping that anyone reading this post will:
- Not dismiss outright the nagging inner voice that says something just seems off with your child. None of us want to be a pest or labeled as a hypochondriac or worse. But there is nothing wrong with making a call to your pediatrician’s office talking with a nurse if you’ve had the feeling that something isn’t right, you’ve allowed some time but don’t see things changing. At first you may not have too much specific to go on, just more general or non-quantified observations like “tiredness, fatigue, upset stomach etc.” That’s ok. Share your thoughts, concerns, observations with experts who can give you feedback and guidance. Make an appointment with your child’s doctor.
- It can take a long time to get a diagnosis and there may be lots of waiting to see specialists which is frustrating. Then there’s the whole medical insurance business of physicians in-network etc. All I can say is try to find a positive outlet to deal with your frustrations because there are plenty of those. Don’t give up if you continue to believe things aren’t resolving. I suggest keeping a diary/timeline of your observations about your child as well as notes about any symptoms your child reports. We know our children best and need to be their advocates. I’ve learned not to assume anything when it comes to a child’s medical care, treatment etc. You need to keep track of pretty much everything like appointments, blood tests and other diagnostic results, medication. If you notice a change in symptoms, frequency, intensity; if your child reports something new, note it; if your child’s symptoms impact school, relationships etc, talk it over with a physician. Don’t assume that your Dr. will get back to you if there’s something to discuss on a test result etc. Follow-up. Thank goodness for patient portals which prove to be super valuable for getting in touch with your child’s provider, asking questions, accessing test results, getting appointments etc. One reality for us which I wasn’t happy about, was sometimes if you are following-up with phone calls, leaving reasonable messages through the portal, voicemail etc. and still not getting a response, you may need to elevate your inquiries and be a bit “less nice.” This is a last resort but once I did call a Patient Advocate after multiple attempts over days. I didn’t like having to do this but it’s about your child’s health first. Some things should be “let go,” but not here. That being said, cultivate and nurture your relationship with medical staff, nurses especially, as they are key in helping you and your child through what is a difficult process. I’ve always admired nurses but the last few years through these experiences I’ve come to a much deeper appreciation. Thank you, nurses! And we love Erin’s pediatric endocrinologist, Dr. Peter Lee at Heshey.
- It is a very difficult to consistently find a reasonable balance with ensuring you have good communication with your child, that they’re going to tell you when they don’t feel right, but not focusing so much on the illness, that your child is scared, can’t think about anything else. For Erin, there were lots of things she could do and we encouraged her to do them but also made sure she ate well and got plenty of sleep. Again, my best advice is to reach out, seek help managing your feelings, emotions, fears. Confide in a trusted friend. Talk with your child’s teachers. coaches, parents of their friends. Quietly tell them about what’s happening with your child and ask them to let you know if your child seems “different.” Continue to enjoy experiences with your child and encourage your child to do things that bring her joy.
[1] The description of hyperthyroidism and information about Graves’ disease provided here is taken from multiple medical websites, pamphlets and other material I’ve collected and reviewed over years. None of this is intended for use in diagnosis or treatment. While I hope this post raises awareness about Graves’ in children, the primary purpose is to encourage parents to listen to their inner intuition when it comes to the health and well-being of their child.
