Fasten your seatbelts and prepare for the ride of your life! The first year of life with a child who has congenital hypothyroidism is quite the roller coaster ride. The first thing we heard was my son had a high TSH, and we needed to start medication. Then, the next blood test revealed that his TSH was still too high and we had to increase his dose. Soon after, the next results showed that he was severely hyperthyroid (his was TSH too low). This went on for the entire first year of his life – back and forth – always having to adjust his dose and then repeat blood draws. After the first year, though, he seemed to level off and we had many more results where his thyroid levels were in the normal range.
When my second child was born and diagnosed with congenital hypothyroidism, we expected a similar pattern. However, we had an even bumpier ride than with my oldest. My little one is very sensitive to dose changes, and his TSH would sky rocket up or plummet down with nearly every change. At one point, he became so severely hyperthyroid that we were told he may need to be hospitalized because his heart rate was too high. The time he spent hyperthyroid, albeit short-lived, also contributed to the soft spot at the front of his skull to close early (at 2 months of age), leading us to two different pediatric neurologists for evaluations for craniosynostosis (which is basically premature skull suture closure). Thankfully, he was cleared by the pediatric neurologist. However, he had an erratic sleeping and feeding pattern that was definitely attributable to his never really having normal TSH and FT4 ranges. For the first year, he spent most of his life either being hyperthyroid or hypothyroid. Here is a graph of his TSH for the first year of life:
He is 3 years old now, and has been on the same dose for a while. So, it does eventually level out for even the “toughest” of patients.
I tell this story to help people unfamiliar with this disease understand how important thyroid disease is and how difficult it can be to manage, particularly in children. Adults can articulate what is wrong, describe their symptoms and tell you when they are feeling off. Infants and young children cannot. I also share this to help parents of children with congenital hypothyroidism discern when their children are hyperthyroid and when they are hypothyroid as it is so crucial to get them in the normal range for healthy growth and development.
I found this chart online at stepintomygreenworld.com and think that it describes symptoms of hyperthyroidism and hypothyroidism very well.
However, with infants, I noticed that there are some other symptoms.
Hyperthyroid: When my children were infants and they became hyperthyroid (typically low TSH levels and high FT4), I noticed they were fussy and agitated. They didn’t sleep as well and they had loose bowel movements. Rapid heart rate is another symptom and your doctor can teach you how to check their heart rate and what the normal beats per minute is for their age.
Hypothyroid: When my children were infants and they became hypothyroid (typically high TSH and low FT4), I noticed that they slept way more and seemed lethargic. For example, my terrible napper would go from taking a 1 hour nap to taking 3 hour naps 3 days in a row. They would also be constipated. Other common symptoms of hypothyroidism in infants include puffy face, hoarse cry and poor feeding. Now that they are older the tearfulness that I noticed in them as toddlers/preschoolers tends to manifest itself more as being moody. They also become more distracted and have difficulty focusing. Recently, I also learned that nosebleeds can be a symptom of hypothyroidism.
I also want to mention that children with congenital hypothyroidism also may exhibit symptoms even when well controlled on thyroid hormone replacements (Synthroid, Levothyroxine, etc.). The most common symptoms I notice in my children even when their thyroid hormone levels are normal are dry skin, being thirsty and being cold. Pay attention to these symptoms as well and make sure your child’s pediatric endocrinologist knows about them.
The thing to remember with all of this is that you know your child best. Over time, you will begin to learn what symptoms your child exhibits when they are hyperthyroid or hypothyroid. If you begin to notice that something is off with them, call your pediatric endocrinologist and tell them you think your child’s thyroid levels need to be checked. In the 7+ years that I’ve been dealing with congenital hypothyroidism, nearly every time I thought levels were off, I was right. You are your child’s best advocate!
Readers, please share what symptoms that you have noticed with either hypothyroidism or hyperthyroidism.
by Blythe Clifford