I was born with Congenital Hypothyroidism

Introducing Teresa Rodgers.

Parents of children with congenital hypothyroidism, have you ever wanted to look into a crystal ball and see what the future holds for your child?  I have.  I worry a lot about what it will be like for them as they get older.  Will they take their medication when they go off to college?  Will puberty be more difficult for them?  How can I make sure they stay healthy during those times?

One of the best things about starting my blog is meeting other bloggers and thyroid advocates.  This journey has introduced me to so many wonderful and amazing people, including Teresa Rodgers.  Teresa, now in her mid twenties,  was born with congenital hypothyroidism.  I recently chatted with her and am thrilled to share her story with you.

When is your first memory of knowing you had a thyroid disorder? How did your parents explain the disorder to you?

According to my mother, I was diagnosed about ten days after I was born and have been taking thyroid hormone replacement ever since. I don’t really recall discussing it much with my parents, but I do remember hearing from my endocrinologist that it was important for me to take my medicine and to never miss a day. I was continuously told if I didn’t take my medicine, my body wouldn’t grow like it should and my brain wouldn’t function and progress like it should. That was the basic message that I heard from both, my endocrinologist and my parents. I didn’t really understand it as a kid, though.

I hated taking my medicine and complained about it often, especially as I got into my pre-teen and teen years. Sometimes I occasionally didn’t take it, usually missed a day or so, mainly because I didn’t make it a priority and usually didn’t remember.

It was about a year and a half ago when my body started “shutting down” that I finally began to realize the true importance of my thyroid gland. I knew something wasn’t right, but I didn’t know what to really listen for or pay attention to. I wish I had been more educated as a teenager, more than just hearing that “It is important to take your medicine.” The reasons why I should take my medicine was never really discussed in depth with me. I was never told all the symptoms to look for with thyroid disorders. It was just me – educating myself in my early twenties (I’m 25). The only symptom I constantly heard about all the years growing up, up until I pretty much stopped growing was the potential for my weight to fluctuate. Nobody talked to me about the other symptoms such as, hair falling out, weak nails, fatigue, tiredness and/or constipation.

What challenges did you face as a kid or teenager with congenital hypothyroidism?

The big challenges for me were the normal “teenage” issues, but compounded by congenital hypothyroidism. I didn’t want to take my pill every day. It was an inconvenience to me. I hit puberty about the same time as my peers, but my menstrual cycle was never regular, which I now know was a symptom of hypothyroidism. However, at the time I didn’t understand the connection. I didn’t have any academic issues and did pretty well in school. I participated in 8^th grade basketball, was a cheerleader all through high school and did ballet and hip hop dance my 11^th grade year. I was just like everyone else in high school and growing up.

I did feel like I was more emotional than my peers, but it’s hard to know looking back if that was just my rocky childhood or if it were related to thyroid issues. The same was true during college. I had an irregular schedule (like most college kids) and didn’t take my pill every day or even at the same time every day because again, it wasn’t a top priority of mine.

Now that I’m older and having to educate myself, I understand so much more about hypothyroidism. Looking back, I wish someone would have talked to me during the different stages of my life and discussed and explained to me the importance of taking my medication regularly.

What is your advice for kids who have congenital hypothyroidism?

My advice would be to tell them that this is not something to be embarrassed about. We are all different in our own way. That this is not a disease; it’s just a part of who you are and how you were made. It makes you YOU. You’re unique, and that’s something to be proud of.

What do you wish you had known when you were younger? What is your advice for parents of kids with congenital hypothyroidism? How can we best support our kids?  

Educate kids. Make sure they are aware of all the different symptoms. Each age brings a new level understanding. Be sure to keep talking about your child’s congenital hypothyroidism with them as they get older. Ask your child’s doctor about the symptoms in front of your child. Don’t become complacent as your kids get older, and don’t assume they understand. Make sure you both understand what you should be looking for when levels are off. Puberty is a tough time to have a thyroid condition. Any change in hormones is difficult, but particularly puberty. There is so much going on with your body at that point (male or female). It’s just so important to be regularly checking thyroid levels during that time for children born with congenital hypothyroidism. I had the same endocrinologist my entire life until I moved away from home when I was 23. One of my first endocrinologists in my new location informed me that the rate of miscarriage is higher for women with hypothyroidism. All young women with thyroid disorders need to be told this and need to be actively talking to their doctors about testing thyroid levels prior to conceiving and while pregnant.

I wish my parents understood more and that my doctors had talked more openly to me about hypothyroidism. I wish that they had talked to me about the importance of my overall health as it relates to my thyroid. I wish had been more active and healthier. Weight is such a big focus these days, but being healthy at a young age is more important. I am healthy now and do a good job of managing my thyroid disorder by regularly visiting my doctor, taking my medicine daily (as instructed), and paying attention to when my body is “telling” me that something isn’t right.

What is the best thing about having congenital hypothyroidism? Is there one?

Congenital hypothyroidism has helped me become who I am. I have struggled greatly. I went through a really rough period of time in my early twenties, experiencing almost all if not all of the symptoms and without even realizing it until I completely lost myself. I always had irregular periods and then constipation was my second known symptom. Being emotional, moody, depressed, having brain fog, being exhausted – I blamed all that on life. It truly felt like my body was shutting down and I had no idea that it was all because of my thyroid until it was almost too late. I finally found a good endocrinologist who changed my dosage, and that is when I realized that I had been on the wrong medication for a year. Because my body felt like it “shut down” on me and I felt like I completely lost myself, I began seeing a counselor and then a psychiatrist to help fix what was “broken.” I’m now the healthiest I’ve ever been. I am very in tune with my body and how it reacts to everything. I’m also very proactive when it comes to pursuing a healthy lifestyle. I refuse to ever let having congenital hypothyroidism control me. In the end, I’m thankful for all the mountains I was forced to crawl up because if it weren’t for those, who knows if I’d be as happy and thankful as I am today.

What made you decide to start blogging about your experiences?

I was having so many health issues. I went to GI specialists and various doctors and they all kept telling me that I was fine (though I knew something wasn’t right). I finally decided to find a new endocrinologist who discussed current and past years blood results and acknowledged that I wasn’t “fine.” She increased my thyroid medication. The symptoms slowly started going away. I knew that I couldn’t be only person who has gone through this. I thought that if anyone else is going through this, particularly younger people, I wanted to help them not feel alone. If I could help one person, then it’s worth it. It’s hard, I think, for young women, especially, to talk about things like having irregular periods or constipation, but those things aren’t normal and we should talk about what’s going on and seek help. I wanted to get my story out there and if I can help one person to push and be proactive, to lead a healthy lifestyle and not let this disorder control them, then sharing my story was worth it.

Any parting words?

Don’t be scared for your child’s future. The symptoms and taking the medicine may seem horrible/inconvenient/stressful at times, but congenital hypothyroidism makes them who they are. I had a rough upbringing, but I did well in school. I’ve graduated college and now have a great job. Help your kids learn how to be healthy, eat well and exercise regularly. I read a lot about adults suffering with hypothyroidism. I often wonder what they are doing to be proactive. Living with hypothyroidism your whole life makes you proactive about your own health, and it makes you look at it as it being who you are. Honestly, I wouldn’t change it if I could. Never have I looked at congenital hypothyroidism as a disease and never intend to. It has taught me so much about myself and I’m more thankful for it than anything.

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I am so proud of Teresa and so grateful to her for sharing her story.  What an amazing opportunity for those of us with young children to hear her advice.  The takeaway for me is to remember to keep talking openly to my children about congenital hypothyroidism as they age.  It was eye opening to learn how she was told about her condition and told to take her medicine, but never really told about all the symptoms she should be on the lookout for.  As a parent of children with congenital hypothyroidism and as someone who has a thyroid disorder myself, I assumed that I was doing a pretty good job of explaining congenital hypothyroidism to my kids.  Her words hit me like a ton of bricks, though.  I think her advice is spot on and what a gift to hear this now when I still have the chance to put her advice into action.  Teresa, you are an astounding young woman and your willingness to share your story has already touched many lives and I am sure it will continue to do so.

You can read more of Teresa’s story here.

By Blythe Clifford