Living with Congenital Hypothyroidism


First and foremost, I want to state that I am not a doctor, despite the extensive hours of Grey’s Anatomy I have watched. This article is not to advise anyone medically. Its purpose is to make people aware of my experience dealing with congenital hypothyroidism. If you have any concerns, please reach out to a medical professional. Today, I want to focus on my experience from diagnosis to pregnancy with congenital hypothyroidism.

What is Congenital Hypothyroidism?

The medical definition for congenital hypothyroidism is when thyroid hormone deficiency is found at birth. Typically, this means that a baby is born with an underactive thyroid. In my case, which is extremely rare, I was born without a thyroid gland. Since the thyroid is an important part of a human’s development, it may sound surprising that this condition is even possible.

The thyroid has several functions in the human body. The biggest ones are brain development and metabolism. I’m sure you are wondering, how can these developments occur if the thyroid is nonexistent. Thanks to modern medicine I can take a medication. A pill called Synthroid (Levothyroxine) provides my body with the functions of the missing thyroid. There are a few rules that I need to follow when taking the medication – which makes this more annoying than you’d think:

1. Must take on an empty stomach
2. Have to wait at least a half hour to an hour to eat after taking the medication
3. I have to wait 2 hours after taking any other prescribed medication

It also took some experimenting because my doctor recommended that I take this before bed, but I noticed that if I took it before bed, I would not be able to fall asleep. Along with the pill, comes bloodwork and doctor visits to check if my levels are in the “normal” range. If it is too high or too low, the doctors will adjust them accurately.

Effects of an underactive thyroid

I’m sure you’re wondering what could happen if my levels are too low. I could become very ill and even fall into a coma. If my levels are off, I can feel it. I become exhausted and super lethargic. I also experience brain fog. I feel like I am in a daze and floating outside my body. No matter how much sleep I get, I cannot shake the feeling of exhaustion. My mood also changes, and I feel so blah. I start to feel grouchy and nothing can shake it.

My pregnancy with my son was the most crucial time to monitor my levels. Typically,  during pregnancy, the fetus relies on you to receive what they need to grow. However, since I am missing a thyroid gland, our baby couldn’t receive the effects of the thyroid through the thyroid directly but through my medication. If my levels were off then my baby wasn’t receiving the chance to develop. I started to see an Endocrinologist so that my baby and I had the best care during pregnancy. This required frequent visits and blood draws. It also meant that my doses of medicine were constantly being adjusted due to my pregnancy hormones. The biggest relief was learning it was not genetic and that I gave birth to a perfectly healthy, beautiful baby boy.

Living with this condition has not been easy, and I hate that I have to worry about this for the rest of my life. But I’m thankful that it was not as bad as it could have been. Also, my son was not affected by it. Since it is a rare condition, I have not been able to connect to anyone about it. If you have this condition as well please feel free to reach out


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