“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...]
Test Anxiety
What is the optimal time of day to have your thyroid levels tested? Tests, tests and more tests! Sometimes I think I have test anxiety when it comes to thyroid hormone level testing. Ever wonder what time of day you should have your child’s thyroid levels tested? Well, I have! I asked our pediatric endocrinologist whether we should give our kids their Synthroid (Levothyroxine, etc.) on the mornings that we are going for blood draws or wait until after the draw to administer the medication and whether we should go in the morning or the afternoon. Our doctor said there are schools of thought that believe there could be an issue with getting an accurate picture of the thyroid hormone levels if the draw is performed within an hour of … [Read more...]
The Hyper-Hypo Roller Coaster
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 … [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...]
Surviving Blood Draws
If you have a child that is diagnosed with a thyroid condition, be prepared for blood draws, particularly if they are born with congenital hypothyroidism. In the first few days/weeks, your child's doctor will probably want repeated blood draws to be sure that the surge in TSH isn't a newborn surge (sometimes it's so high it's clear that it isn't just a surge) and then once they start medication, they will check to be sure that the medication is working. As infants, my boys were checked every 2-4 weeks for a while. Surviving blood draws becomes crucial to everyone's sanity. Here are my best tips: Blood Draws with Infants 1) RELAX!!! Seriously - take a deep breath and relax. If you are uptight, then your baby will sense this 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...]
Saying Goodbye
So, a few days ago, I had a pretty emotional day. I received a call from our pediatric endocrinologist, saying that it was her last day and that she was taking a new job outside of the university. I am so thankful that she took the time to call and say goodbye. Having a child with a chronic condition means that you visit Drs a lot. Continuity of care becomes a big issue. We have been seeing this Dr since my oldest was born, so about every 3 months for the last 7 years. That's more than we've seen some of our family! When you see a Dr that frequently, you bond with that Dr and so do your children. They know everything about your children, your family, your lifestyle, etc. You begin … [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...]