What does it feel like to be "off"? A follow-up Q &A with my oldest son about his Congenital Hypothyroidism Symptoms Recently, a reader asked me if my son could help articulate what "off" feels like using feeling words like tired, achy, etc. to help her better understand what her child was experiencing. In other words, better describe the symptoms of congenital hypothyroidism. Interestingly, her question coincided with a period of him being "off". We noticed that he seemed to be more tearful and have more difficultly sleeping. Both boys have an appointment coming up with their pediatric endocrinologist and so just had their thyroid levels (TSH, FT4, & T4) checked. The results revealed that my oldest (the one interviewed) is … [Read more...]
Graves’ Disease – A Family’s Struggle with Thyroid Disorders
Graves' Disease - A Family's Struggle with Thyroid Disorders I got such a great response on my interview with my oldest son about life with congenital hypothyroidism that I decided to interview my husband about his experience with Graves' Disease. I think I may be obsessed with interviewing people, especially family members. Watch out family! Just a heads up for Thanksgiving! Anyway, here's what my darling husband had to say. What is Graves' Disease? Graves' Disease is an autoimmune disease that causes the overproduction of thyroid hormones, in other words hyperthyroidism. When were you diagnosed? At age 28, I had lost some weight and wasn't sleeping well. I decided to go in for a physical before our first son was born, … [Read more...]
Out of the Mouth of Babes: A Child’s Perspective on Congenital Hypothyroidism
That’s me with my oldest at Disney when he was 3 years old and then again just recently. He’s 7 now. Those 4 years certainly flew by - way faster than he drove me around that race track a few weeks ago. He’s turned into quite the amazing kid - wise beyond his years. I recently interviewed him about what it’s like to have congenital hypothyroidism and here’s what he had to say: What does congenital hypothyroidism mean? It means that your thyroid doesn’t work that well. You don’t want to have it. You have to take a pill every morning. Where is your thyroid? In your throat and it’s shaped like a butterfly. How did you learn to take a pill? My wonderful mom and dad just told me I had to. I said I don’t want to … [Read more...]
The Phone Call
I wanted to start off by talking about the day I received the call from our Pediatrician telling us that there was something wrong with our son. We had only met the Pediatrican once and that was at the hospital shortly after our first son was born. He was very nice and we liked him a lot. We were surprised, though, for him to be calling us at home only a few days later. He told us that the newborn screening test revealed that our son had a very high TSH and that it may mean that he had a disorder called Congenital Hypothyroidism. He indicated that he had referred us to the Department of Pediatric Endocrinology at the Children's Hospital about 30 minutes from our home. He said they needed to do more blood work and told us which lab to … [Read more...]