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Trusting her gut

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It was early fall, but it had already been a long school year for my daughter. Kate was a good student with a lot of friends, but she had begun to dread going to school. At the same time, she was also noticeably tired, angry, and very worried. An initial physical exam showed nothing but good health. Yet, Kate — always an outgoing and fun-loving kid — was changing before my eyes, and I had no clue as to why.

She also had purple circles under her eyes and a distinct lack of appetite. I took her to a new doctor, since the pediatrician she had since birth had just retired. She was tested for everything from Lyme disease to West Nile, and all the tests came back normal.

Her teacher said she didn’t notice any odd behavior and Kate’s grades were still good. She assured me that Kate wasn’t being bullied or left out, but, increasingly, Kate did not want to go to school or do much of anything, really.

Kate complained of severe headaches and stomachaches, but — more than anything — she was always tired. I wondered if all the symptoms were just a combination of her worrying about going to school, which caused her to lose sleep and not eat right, which in turn, I assumed, accounted for her feeling sick. After all, her pediatrician said everything was fine.

But deep down, I felt it was more than that. I knew my child instinctively, and I knew something was wrong beyond her not wanting to go to school.

I resigned myself to find a physician who could help her, so we went to another doctor who ordered more blood work. While waiting for the tests to come back, Kate started having panic attacks, both at school and at home. She felt like she couldn’t breathe and had heart palpitations, which made her believe she was going to die.

It was heartbreaking and probably the most worried and confused I have ever been as a parent. She had already been to a doctor who said she was fine, yet she was getting worse.

The next afternoon, the new doctor called me, and said Kate’s thyroid levels were completely off. She had to be hospitalized and have more tests done. The doctor assured me that her diagnosis was not life threatening and could be handled with medication as soon as she found out the extent to which her thyroid was functioning.

Her official diagnosis was Hashimoto’s hypothyroidism with fluctuating high and low thyroid levels, which accounted for the panic attacks. The compromised thyroid was responsible for the headaches, listlessness, joint pain, severe weakness, and a host of other symptoms she was experiencing. After a few days, Kate started on the drug of choice, Synthroid, which is a synthetic thyroid replacement hormone, and over the next few months, she slowly improved.

It has been 5 years since she was diagnosed at age 9. Now at 14, although she has improved, she still suffers from debilitating symptoms. Hypothyroidism is an autoimmune disease that causes the thyroid to not function optimally, so the thyroid gland is underactive or sluggish. It produces a host of symptoms, including extreme fatigue, weakness, exhaustion, headaches, and many more. It is managed, not cured. In many cases, it’s a lifelong struggle to find a balance and feel good.

If I had not pursued the fight to identify what was wrong, if I had settled for the doctor’s word above my daughter’s symptoms, she might have gone for years without treatment. Thyroid disease is typically diagnosed in infancy or in postmenopausal women. It is not commonly diagnosed in children, and many pediatricians do not have experience with it.

When you know something is not right in your child, you have to explore it. Nothing is as on target as a mother’s gut feelings. Trust yours, every single time.

Next month: Do you suffer from hypothyroidism and still feel terrible, despite treatment? We’ll explore the mistreatment of patients with hypothyroidism in the November issue.

Danielle Sullivan, a Brooklyn-born mom of three, has worked as a writer and editor in the parenting world for more than 10 years, and was recently honored with a Gold award for her health column by the Parenting Media Association. Sullivan also writes for Babble. You can find her on her blog, Just Write Mom.

Updated 4:30 pm, July 9, 2018
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