When Does She Get to Feel Normal?

Managing congenital hypothyroidism is freaking hard. There. I said it. I'm frustrated and scared and sad and intimidated. I didn't think this disease would be quite so precarious. I thought I would know more by now. I thought that I would worry less (yeah, right) and know what to expect next. I research and read. I listen when the doctors talk. I'm proactive, not reactive. I pray. I cry. I worry so much about her. When does this disease get less overwhelming? When does she get a break from doctors and blood draws? When will I sleep through the night for days leading up to and after her blood draws? When does her tiny little body get to feel normal?

Let's go back a few months. Back in July I sent a message to Hadley's care team letting them know that I noticed her toenails cracking and splitting. Her Pediatrician did an e-consult with a dermatologist who said that "this can be from an underlying thyroid or metabolic disorder." Her Endocrinology NP ordered lab tests. Not surprising they were abnormal. Actually the TSH was normal, but her T4 was high, 2.1 ng/dL. (For reference, normal is 0.8-1.6 ng/dL). She decreased her Levothyroxine to 68.5mcg daily and gave instructions to recheck labs in 6 weeks. We saw Hadley's NP in the office at the beginning of August, and her toenails were improving. Seemed like the dose change was what she needed.

We repeated the labs at the end of August as scheduled and were disappointed to learn that her labs were even further from normal than last time. Hadley was very much enjoying her summer. She's always very active. Whether it be swimming, playdates, playgrounds, or dancing, she kept busy. She didn't complain about feeling tired, hungry, hot, or cold. She had no trouble sleeping and her appetite was so-so, as usual. So it was discouraging when her TSH was 0.381 ulU/mL (normal is 0.7-6.0 ulU/mL). Her T4 was even higher than last time (2.3 ng/dL), despite decreasing her dosage. We decreased her medication again, and we were told to repeat her labs in 6 weeks.

That brings us to today. Hadley has about 6 weeks of Kindergarten under her belt. She joined the K-6 grade Cross Country team and she dances 3-4 days a week. She spends every Friday night at Colton's football games, and every Saturday morning at Tuck's. She's making the sweetest new friends at school and learning that girl drama is very real and starts VERY young. She has memorized her sight words and can do single digit math. She loves to draw and color and will spend hours do just that, with no distractions, on the weekends. Sometimes she has bad dreams and comes into our room at night, but I don't mind. She's a good snuggler. So what am I so worked up about? When I lay it all out like this, I don't really know. I just know that when we repeated her labs, they came back abnormal. Again. This time her T4 was normal (??) but her TSH was considered "critically high" at 48.1 ulU/mL.

So what does this mean? I have no idea. This is where my worry and fears come in. Is she feeling funny on the inside but not yet able to put it into words? Is she more sleepy or sluggish than the other kids at school? Does she play by herself and spend so much time coloring so that her body can rest? Is she crying because I won't let her wear mismatched clothes or does her head feel foggy? Is she really sleeping okay or am I not waking up when she does? Should her barely-there appetite concern me more than it does? I make jokes about it, but maybe it's a big deal. For now, per her Endocrinology NP, we will increase her dose. She will take 62.5mcg Monday-Thursday, and 68.5mcg Friday, Saturday, and Sunday. We'll recheck her labs in 6 weeks.

Please pray for her.

Love to you all,

Gini