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...]
My Letter to My Sons
Thyroid Advocacy for our Children Hold on, to me as we go As we roll down this unfamiliar road And although this wave (wave) is stringing us along Just know you're not alone Cause I'm gonna make this place your home Settle down, it'll all be clear Don't pay no mind to the demons They fill you with fear The trouble it might drag you down If you get lost, you can always be found Just know you're not alone Cause I'm gonna make this place your home -Phillip Phillips, HOME The other day, I was riding down the road listening to Phillip Phillips’ song, Home. I’ve heard the song plenty of times, but that particular day, it struck me that a parent could have written this song to their child. I write mostly about thyroid related … [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...]
“Of all the sly, subtle problems…”
“Of all the sly, subtle problems that can affect physical or mental health, none is more common than thyroid gland disturbance. And none is more readily and inexpensively corrected. Yet none is more often untreated and even unsuspected… One of the most common symptoms is fatigue. It can vary from relatively mild to severe. It may come on so slowly that a victim, feeling no sudden or precipitous decline in energy level, may come to accept fatigability as--for him--a virtually normal state. I have seen many children who suffered from repeated colds followed by complications such as tonsillitis, sinusitis, ear and mastoid infections, who needed repeated antibiotic treatment and went right on getting new infections until their … [Read more...]
Congenital Hypothyroidism: A Dad’s POV
I'm happy to introduce my husband, Mac, as my guest blogger today. I asked him to write about what things were like for him when our boys were infants and share his advice. Here's what he had to say: My wife aka Thyroid Mom asked me to write about what I have learned as the Dad of 2 children with Congenital Hypothyroidism. I hope it can help other Dads out there, or at least let them know they are not alone. First, let me start off by bragging because that's what we Dads have to do. That picture you see is of me holding my oldest son when he was an infant in the "football hold" as we call it in the US. It was his favorite way to be held, and I could always rock him to sleep this way. Isn't he a handsome baby? Okay, … [Read more...]
The First Appointment – Pediatric Endocrinologist
If your child has congenital hypothyroidism, then you will probably be referred to a pediatric endocrinologist. The first few appointments my husband and I went to with my newborn son at the pediatric endocrinologist's office were not so great. My sweet boy hated riding in the car and screamed the entire way to the children's hospital located about 40 miles away (1 hour if you count driving and parking). We waited for over an hour to see the doctor. We didn't bring anything to write on and ran out of diapers. Truly brand new parents. We left feeling a little better about our son's condition, but in general, disappointed with the lack of information. Over time, we learned the tricks of the trade and … [Read more...]
What is Congenital Hypothyroidism?
This is the question I get asked most frequently. Let me answer this and a few other common questions. This is just information I have collected over the years and not an official medical opinion. What is Congenital Hypothyroidism? Congenital basically just means you are born with it instead of acquiring it later in life. Hypothyroidism usually means an underactive thyroid gland (as opposed to hyperthyroidism which is an overactive thyroid). With children, it can mean that they are either born without a thyroid gland, they are born with an underdeveloped or misplaced thyroid gland, or they are born with a thyroid gland that just doesn't work as it should. For my kids, it's the latter - they have thyroid glands that seem normal, … [Read more...]