Hello! Since January I’ve been a part of some Congential Hypothyroidism Support groups but found that most of the members were moms who had questions about their kids. Soon after we started a separate group only for adults with the disorder and found that we were all seeing similar questions from moms with little kids. And thus, this post was born. Myself and two other adult women from the group answered some of the more common questions that we saw being asked in hopes that it could provide some insight or comfort to mamas! Add your own questions in the comments and there may be a second installment. 🙂 We hope this is helpful to you!
1.) Is there anything you wish your parents did/didn’t do associated with your CH?
Kristen (US, Colorado): Honestly, no. I know that they took me to several specialists as a baby since CH was still pretty rare in the 90s but as far as I can remember they never made a big deal of it, which helped me immensely. I never thought there was anything super wrong with me because taking a pill was all I had ever known! It was never a big deal in our family and I didn’t feel any different than my non-CH siblings. Seeing it as my normal helped me to feel normal, so I think treating your child like any of their siblings (while making sure they’re healthy) is the best thing you can do.
Kylie (UK, Stapleford): Really happy with everything my parents did, I was born in 1987 and it wasn’t known hardly at all here in the UK. The top endocrinologist at the time was based at the hospital in which I was born, luckily for my parents, so they had all the information there and then along with many visitors to come and see how I was developing in the early weeks. They bought me up exactly the same as if I was born with a normal functioning thyroid and nothing was ever put down to being because of my CH. If I was ill, I was just ill the same as every other child could get ill. Never treated any differently and i think thats the best thing as a parent you can do.
Tamara (US, Kansas): My parents were great with it! They did a lot of research and also took me to a case study group in Michigan from 92-96. They really did everything they could to help me in whatever way they could. They brought me up like a normal child and I honestly didn’t realize I was different until high school. I do wish they talked to me about it a little more in high school because I actually didn’t know about not eating for 30 mins after my meds.
2.) Do you think your teenage years were more difficult to manage because of your CH than others?
Kristen: The teenage years are hard for every person I know, but my CH didn’t make it any harder/worse for me. The great thing about it is that it’s not something that people can “see” on you, and it doesn’t make you noticeably different. Nobody knew unless I told them, and I rarely felt the need to! I started puberty at a normal age and had the normal angst and struggles. Nothing out of the ordinary. If you act like everything is normal your child won’t notice that anything is off.
Kylie: As a teenager I was tall and skinny but very active, running, football (soccer) and many other sports. I loved my teenage years. Spent them as a normal hormonal teenage girl… tantrums, puberty, had boyfriends, went out with friends etc. The only thing which was different was I just got to miss school every few months for an afternoon for a blood test.
Tamara: Nope, I think all teenagers have difficulty managing teenage years. It’s just a thing, I didn’t feel any different than my peers.
3.) When, if ever, did you get a sense of “feeling off” and knew to get your levels checked more frequently? Did you talk about this freely with your parents/caretakers?
Kristen: I notice that I get more tired than usual and then would get my levels checked, but usually I mistook it for just being sick! Since my levels were checked every 6 months-year it wasn’t until my teenage years that I was able to notice when I might need to go up a dose.
Kylie: I don’t think I ever really noticed until adulthood when my levels were off, but usually it is down to me being really forgetful and forgetting a couple of doses of my meds. I’ve always had blood tests so it was always monitored. I usually end up really cold, really tired and my skin goes dry and bad and I put on weight! The best thing about taking the meds is they make me loose weight. Cheaper than slimming world!
Tamara: I had an awesome endocrinologist who explained it to me very well when I was in high school. She even put in a standing lab order so I could get labs done whenever I wanted. I definitely had times when I was feeling off in hs, college and I still do now but in just get checked and move forward. Didn’t discuss it much.
4.) Did you ever get frustrated/angry that you have to take a pill every day for the rest of your life?
Kristen: This question honestly made me giggle. I’m a big-picture person, so taking a pill to manage a congenital disorder is one of the easiest things (when I remember!). It could be so much worse! I have never ever felt angry or frustrated that a pill was part of my life. Since it’s my normal, I’ve never known anything else, so it’s not like I went from not ever taking pills to always taking one. It’s just what I do.
Kylie: I’m with Kristen on this one. People take all sorts of tablets every day. I do miss the odd one here and there but it’s never intentional to rebel, it’s just something I do before my cup of tea each day. I take it the same way as we have to wash every day/ brush your teeth everyday. Its just completely normal to me. If anything I like that I’m a part of this little club. Through our Adults Born with CH group I’ve met some lovely people this last month.
Tamara: I’m also with Kristen and Kylie. This has always been my reality. It’s as normal as brushing my teeth. I never really think anything of it. – Tamara
5.) Do you ever feel like you are held back physically, emotionally, or mentally from your peers because of CH?
Kristen: Not as a child. I notice the physical things more as an adult (namely, needing enough sleep or now being gluten free) but as a child other than being smaller than average (which, btw, I didn’t notice either…it was just how I was) I didn’t notice anything.
Kylie: Never been held back at all. I was really good at sports until I had kids and got a little sidetracked so don’t do much at the moment. But never been any different to my friends at all.
Tamara: Nope! I am not great at sports but that is more genetic for me. I could do anything I want to and my parents have always encouraged me as such.
6) Have you ever noticed that your CH affected your schooling in any way? Either when labs are off or not.
Kristen: Definitely not. Except for math, school was something I was always good at and I’ve always been a bookworm, largely because my mother modeled that. Concentration has been more of an issue lately but I don’t necessarily chalk that up to CH, I have a family history of ADD type stuff.
Kylie: I did really well at school, without being big headed it all came quite easy to me. Concentration in class was an issue for me but my 7-year-old who has a fully functioning thyroid is EXACTLY the same as I was! Absolutely brill at school but could do with concentrating more so I wouldn’t put that down to CH at all.
Tamara: Definitely no on this one. I mentioned above that I didn’t realize I couldn’t eat around my meds. I learned that about two years into my electrical engineering degree. I was doing fine in school, was just fatigued and spacey. My dad got my labs and said “did you just quit taking your meds for a month?” I felt terrible then but I still got As and Bs in my engineering classes. Whether my labs were good or bad, I never had issues in school.
7) General words of wisdom?
Kristen: I cannot emphasize this enough: If your child has the dosages they need they will be pretty normal and you do not need to worry. The developmental, mental, emotional, ect, delays happen when the child is not treated. My parents didn’t treat me differently so I didn’t think I was different! Also- if your child misses a dose it is absolutely okay. They will be fine. Heck, I’ve missed a whole week multiple times and while I don’t feel great as a result, I am alive and recover once my meds are back in my body. I have always considered myself lucky that this is such a manageable thing!
Kylie: I will echo Kristen’s words again. Your child will be completely normal because of their meds. If they need glasses its because of genetics or they just are unlucky to have poor vision, if they have a sickness it is because they are ill. Whereas if they are constantly cold it is probably CH related and get their levels checked. (Although I’m always a little chilly) Treat them as if there is nothing wrong with them. Don’t treat them any different to other siblings or they will grow up blaming everything on CH and it isn’t the case. Just make sure they get their levels checked regularly.
Tamara: I have to echo both Kristen and Kylie. Both of them have very good points. Definitely treat your child normally. They are okay and will grow up just fine with the meds. Don’t blame every little thing on the CH, some things are just genetics or kids. Stay up to date on their labs and keep track (I do it on google sheets) but don’t worry so much. Hang in there and feel free to ask us whatever you need! – Tamara
8) Do adults with CH have problems with pregnancy/getting pregnant, ect?
I sure hope not but I’ll let you guys know when I know 🙂