My daughter was diagnosed with celiac disease over four years ago. Since she's gone on a gluten-free diet, her health has been really good, until recently, when joint issues started to be a problem. We got her an appointment with a pediatric rheumatologist, who noted all our concerns and gave her a thorough examination. She ordered in-depth blood work and X-rays, and sent us off to await the results.
When the blood work came back, it was abnormal — she had several inflammatory markers, and her thyroid panel revealed it was out of whack. Her TSH was mildly elevated, and she was positive for not one but two thyroid antibodies.
However, since her X-rays came back normal, the rheumatologist said she was likely "fine" and ordered physical therapy, despite the slew of out-of-range blood work. She said she discussed my daughter's thyroid results with a pediatric endocrinologist, and stated that since my daughter's TSH was "barely elevated" at 5.6, she wouldn't need treatment. We were to follow up in a month, but that was it.
After that phone call, I sat there in disbelief. Celiac disease is an autoimmune condition, which means your body attacks you for no good reason at all. If someone has an autoimmune disease, they are at higher risk for developing other autoimmune diseases. And a quick internet search reveals that carrying thyroid antibodies while paired with an elevated TSH indicates you likely have autoimmune thyroiditis, also known as Hashimoto's disease.
However, when I asked about getting her in to see a pediatric endo, I was actually discouraged to seek that second opinion. The nurse told me that since they had already consulted with one, it wasn't necessary. I couldn't believe what I was hearing. I could feel the anger rising in my chest as I processed her words, but when I spoke, I was completely calm. I told her there is no way I'm letting my kid suffer if she doesn't have to, so get that set up ASAP.
The nurse I spoke with continued to be very nice to me despite the hard edge my words undoubtedly took, and we got set up with an endocrinologist in a few weeks' time. Once the appointment rolled around, I went in knowing I would have to be strong for my daughter. I'm good at typing and making my case over the phone, but face-to-face confrontations make me queasy. But I was ready to state our case — that I didn't want her to be brushed aside because she wasn't sick enough. I knew something was going on, and I was determined to not leave the office until we were really listened to.
Amazingly I didn't have to be listened to at all. The pediatric endo looked over my daughter's test results, did an examination and said she definitely has Hashimoto's and is probably hypothyroid. He sent her for more blood work to retest her TSH and stated that if it was still elevated, she'd start treatment. And even if it wasn't, she'd need to be monitored very carefully and frequently, because she is at high risk for becoming hypothyroid at any time.
If I had listened to the first doctor, taken her advice and ignored my intuition, my daughter would have remained undiagnosed and unmonitored. The endocrinologist says her thyroid may be the reason behind all her symptoms, and if she needs treatment, she may feel all better (though this is, of course, not guaranteed).
Though my daughter's medical mystery is not solved, we have secured a big piece of the puzzle. It's a lesson all parents can learn from. Trust your instincts, and push for another opinion or more testing even if you're discouraged from doing so. You know your child best, and you know if more investigation into what may be going on is needed. You are your child's best advocate.
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