Individuals with Down syndrome are at an increased risk of developing thyroid disease, primarily autoimmune, with a lifetime prevalence ranging from 13% to 63%. It has also been found that congenital hypothyroidism is about 28 times more common among infants with Down syndrome than in the general population, which is detected by a newborn screening. After the newborn period, the incidence of elevated TSH values in those with Down syndrome increases and has been reported to be as high as 85% in infants under the age of 12 months. Because people with Down syndrome have an increased chance to develop hypothyroidism, they are “screened” or tested for this disorder regularly, by blood tests, over the course of their lives. Current health supervision guidelines for children with Down syndrome suggest reviewing results of the newborn thyroid function screen, then repeating thyroid function tests at the age of 6 months and 12 months, and then annually.
It is unclear why people with Down syndrome have such an increased chance to develop hypothyroidism, but the good news is that it is easily treated with medication. Hypothyroidism is treated by replacing the missing the naturally occurring thyroid hormone with a synthetic replacement called levothyroxine (brand name Synthroid). Levothyroxine is a pill that is taken daily and must be taken for the rest of a person's life. Babies with hypothyroidism may be treated with a liquid version of levothyroxine until they can handle swallowing a pill. Once a person has started treatment, their doctor will continue to monitor their hormone levels and their symptoms, to make sure that they are receiving the right amount of levothyroxine.
We've had Delaney's thyroid checked at the recommended times and she is becoming a champ at having her blood drawn. She did not even cry this last time. What a brave girl! So far we haven't had any problems with her thyroid.