She was this happy, fun-loving, wild child,” said Danielle Sullivan, a writer from Brooklyn, N.Y., about her daughter, Kate, who is now 16. But when Kate was 9 years old, things changed suddenly.
“She was completely not herself,” said Sullivan. Kate was often exhausted, had frequent headaches and stomachaches, and had thick purple circles under her eyes.
Kate’s pediatrician, who had known her since birth, noticed that she seemed lethargic. He first suspected Lyme disease, but the tests came back negative. More tests from a new pediatrician also came back normal.
Finally, after months of testing, a doctor did a thyroid test to screen for the level of thyroid-stimulating hormone (TSH), almost on a lark, Sullivan said.
Kate’s TSH level was 2.5 times the upper limit of the normal range, at nearly 10 milli-international units per liter (mIU/L). The normal range for TSH is usually between 0.3 and 4 mIU/L.
“That’s when we knew Kate had hypothyroidism,” Sullivan said.
The Difficulty of Recognizing Hypothyroidism in Children
Hypothyroidism happens when the thyroid gland, located in the front of the neck, doesn’t produce enough of its own hormones to meet the body’s needs. This causes the pituitary gland to release more TSH in an unsuccessful attempt to jump-start the thyroid back into action.
Thyroid hormones affect many important processes in the body, including metabolism, brain development, heart and nervous system functions, body temperature, and weight. When there aren’t enough of these hormones in the bloodstream, symptoms like fatigue, a puffy face, intolerance to cold temperatures,constipation, dry skin and hair, and weight gain develop. In children, hypothyroidism can also stunt growth and affect intellectual development.
Sullivan said she knew something wasn’t right with her daughter, but it was difficult for Kate at such a young age to find the words to describe how she felt.
In general, hypothyroidism can be more difficult to recognize in children, said endocrinologist David S. Cooper, MD, a professor of medicine in the division of endocrinology, diabetes, and metabolism at the Johns Hopkins University School of Medicine in Baltimore.
Dr. Cooper said that key signs of hypothyroidism in children may include not growing normally, lagging behind behaviorally, having an enlarged goiter (swelling in the neck), experiencing learning disabilities, falling asleep during the day, and having low mood, or depression.
Hypothyroidism also runs in families, and a pediatrician may be more likely to investigate thyroid problems if a parent has thyroid issues.
Sullivan’s mother had hypothyroidism, and she recommends mentioning it if thyroid disease runs in your family and you suspect that your child has a thyroid problem. “It’s so simple to get diagnosed, and yet it’s something a pediatrician will never think of or offer,” she said. “It’s really unheard of.”
Kate’s Story: Overcoming Challenges
As hard as it was to get her daughter’s hypothyroidism diagnosed, Sullivan said that diagnosis ended up being easier than finding treatment “because pediatricians know so little about it.” Endocrinologists are more familiar with the condition, but Sullivan said they still went to five endocrinologists over five years before finding the right one — just two years ago — to treat her daughter.
At first, Kate was prescribed the synthetic thyroid hormone levothyroxine sodium (Synthroid). “They said to put her on that and everything will be fine,” Sullivan said. “But it is the biggest myth.”
The dose of synthetic thyroid hormone Kate was prescribed proved to be too high and made her thyroid overactive. “She started having panic attacks, brain fog, and was a complete mess,” her mother said.
Like Kate, their current endocrinologist also has Hashimoto’s disease, which is the most common cause of hypothyroidism in the United States. Hashimoto’s disease, which causes chronic inflammation of the thyroid gland and interferes with thyroid hormone production, is one of a group of immune system disorders called autoimmune diseases, which cause the body’s immune system to attack its own cells.
Because her immune system was compromised, Kate was prone to illness and infections like bronchitis. Sullivan said it wasn’t until they found Kate’s current endocrinologist that they understood the impact of Hashimoto’s disease on her immune system as well as her thyroid.
Hashimoto’s disease was also affecting Kate’s cholesterol levels. “She was this thin, healthy eater,” Sullivan said. “For her cholesterol to be high was really strange.”
Their doctor explained that elevated cholesterol levels is common among children with Hashimoto’s disease, and treating the disease helps bring down those levels. He tested Kate’s vitamin levels as well as her TSH levels and prescribed vitamin B12 and vitamin D supplements to boost her immune system.
Kate also changed her diet to eat only pure, unprocessed foods and no red meat or gluten. Now, Sullivan said, Kate’s hypothyroidism is under control after much trial and error.“It’s a disease that’s managed, not cured,” she said.