Many would say today that if you had to have a birth defect, you would be their choice; as the treatment is without side effects. These days, you require only a pill, such as Levothyroxine, Synthroid, or Armor thyroid, to supplement the thyroid hormone. In pill form, the hormone is simply delivered without a need to suffer the conditions and outcomes that I experienced in early development - without a test to determine the need for treatment. In America, today, most children are checked at birth for this condition and treatment is started immediately if found. Previously, though, those affected were considered ‘mentally retarded’ and did not live very long without a supplement.
At birth the signs of your presence had been masked as my mother supplied me with her thyroid hormone en utero. It was after my birth and at home that the telltale signs appeared. This period prior to treatment created concerns for the doctors and problems for me as there were no long-term study results from which they could provide reliable estimates of outcomes - the thyroid medication had only been in use for approximately 18 months prior to my birth. Without this information, I was diagnosed in childhood but it was difficult for the doctors to tell my parents what they might expect in regards to my potential physical and mental development. From conversations I had with my parents as an adult, I learned that the doctors had delivered low expectations for what I might be able to accomplish on an intellectual level. With inaccurate information, my parents did not expect much from me and my sense of self- worth was respectively low.
I have read over a considerable amount of information on you, CH, and understand that the problems that present themselves as a result of having you vary depending on the amount of time that the condition goes untreated. As a result of delayed treatment and your presence in my life, I developed Atrial Fibrillation and Attention Deficit Disorder (AD/HD), along with Clinical Depression. Fortunately, I do have above average intelligence, which allowed me to obtain a college degree and pursue work in my field of study. Unfortunately, the ADD caused all sorts of problems with my employers over the years and at home.
Furthermore, the numerous blood draws that began in infancy led to a lifetime aversion toward needles. On the positive side, this kept me far away from IV drug use, which became popular in my youth and early adulthood. I have not struggled with drug addiction, as I resented so much having to take a medication every day. Unfortunately, the mean kids in school found out and would tease me saying things like, “Have you taken your pill today?” Furthermore, on the negative side - it made it very difficult to watch, much less assist, my daughter with insulin injections when she was diagnosed with Juvenile Diabetes just after her 14th birthday. I still have a hard time watching needles going into bodies now, even if it’s just a movie.
I am now 66 years old. I am grateful at this stage of my life to be in fairly good health. My support system which includes a loving and knowledgeable partner, loving children, grandchildren, close friends, and informed medical specialists help to keep me in good spirits, most of the time. I realize that I am one of the oldest CH people alive today and feel fortunate to have been provided with the life-saving medication at the near beginning of my life. Yes, it would have been nice if the doctors who were caring for me in my infancy and childhood could have given my parents a more positive prognosis; but it is understandable why they didn’t. Nevertheless, my life has been more full than empty. CH, you have been a pain in the ass to live with, but I suspect that you partnered with me to help teach me many of life’s lessons and for those reasons; I choose to accept your presence. Next life, however, I’d appreciate it if you’d go couple with someone else.
Male, Age 66
Congenital Hypothyroidism, Atrial Fibrillation, AD/HD, Clinical Depression
Brianna Schiavoni, LCSW
“Ms. Schiavoni has given a voice to many people who battle various diagnoses. Through this therapeutic and empowering writing project, participants can finally share their story and reclaim their power over that diagnosis!”