I don’t believe that there are coincidences. I believe that things happen for a reason. One of the best parts of having a website and blogging about thyroid disorders is that I have met some incredible people along the way. One of those people is Dawn. I don’t think it was a coincidence that we “met” online. Her story is similar to mine in that she also has an entire family with thyroid disorders. As you will see, hypothyroidism in children is not as rare as you think. I am honored that she is willing to share her story here at Thyroid Mom. I hope you enjoy learning about her and from her.
My name is Dawn. I’m a wife, mother, college student, housewife, and I sell jewelry in an online store. I also have Hashimoto’s. People are often surprised when I tell people that my whole family has thyroid issues. It surprises me that adults don’t even know what hypothyroidism is or that children can have it also. My 11-year-old son often explains this to his friends and their parents. Both my husband and myself have a significant family history of thyroid problems going back several generations.
I started to notice my thyroid issues when I was a teen. My initial symptoms were things like being cold all the time (I lived in Southern Texas at the time and I would wear my sweater to school all day), memory issues which no one took seriously, brittle nails, thick calluses on my heels and irregular cycles/changing cycles. I had my thyroid checked when I was in high school. I was told that my levels were “normal” at the time. I let it go, but two to three years later, I went in for a routine appointment (before I was getting married) and that is when they noticed that my neck was swollen. In my opinion, there is no way I went from no nodule to a visible one in that short a time frame. I was 19 when I was diagnosed.
I had several doctor visits over the next couple weeks to make sure that it wasn’t cancer, and it wasn’t. My doctors put me on Synthroid for the next few years. Sadly, my nodules continued to grow, and so only a couple years later I had yet another biopsy. At that time, I decided, with my husband’s input, that I didn’t care what the results were – I wanted the dang thing out. Here I was in the supposed prime of my life and the word cancer was being thrown at me – more than once. At my biopsy, I told my doctor what I had decided, and she agreed and referred me to a surgeon.
When I went in for my consult, he did this little test. He gave me a gulp of water and told me to look up and swallow. I couldn’t do it. He then told me that this was because my thyroid was partially blocking my throat and that it should come out. All these years I had been told that my inability to swallow certain pills was all in my head. They were wrong. I was only 23 when I decided to get my thyroid removed. The surgeon was good and left minimal scar tissue and he didn’t take all of it, so I do have a small part of it left. I would love to say that that was the end of my troubles, but I would be lying. However, I am happy to report that I have never regretted that decision. I’ve had several doctors who were just not good thyroid doctors, but thankfully I have had a couple of good ones too. It wasn’t till May of this year that I was actually told that I had Hashimoto’s thyroiditis. Up to that point, I was told that it was just hypothyroidism. Even at my partial removal, they didn’t tell me. I still have bad days but I have good ones too.
My husband doesn’t have much of a story. He went in for a routine lab check and the results showed that he needed medication for his thyroid too. He claims he didn’t have any symptoms until after he was put on the medication. He has the least complicated story out of all of us! I guess we needed at least one simple case.
Now, about my children, both of whom have hypothyroidism. I had been watching my oldest daughter for symptoms, because I’m well aware of the family history and I knew there was a good possibility that she would inherit this issue as well. When she started kindergarten, her weight began to significantly increase. Up to that time, I used to call her “Skinny Minnie”, because she was tall for her age, skinny, and looked a lot like I did at that age. I thought it was odd that she was suddenly gaining weight and had her doctor run some tests. He said everything came back normal. I figured I would just watch her and, if necessary, I would have her retested at a later date. I didn’t get her tested again till earlier this year. My daughter is now 13 and has hypothyroidism. As it turns out, hypothyroidism decided to show itself around puberty, which is about the time I suspect that mine occurred. We are still working on getting her on the proper dose since she was only diagnosed this year. She is not symptom-free yet. Her symptoms include irregular cycles and being cold often. She is pretty good now at taking her pills. I bought her a weekly pill case and she uses that.
My son’s journey with hypothyroidism has been more difficult. Last winter, he kept complaining about pain in his knees. He was seemingly so healthy compared to the rest of us, so I thought well maybe he over did something and waited a bit to take him to see a doctor. Our doctor was pretty useless and basically told us to give him 6 weeks and he should be better. At that point, I knew that when he didn’t feel better that this issue was out of his league, yet again. So I decided to try to take him to a sports medicine doctor who had helped my husband in the past. He ran lots of tests, including MRI and ultrasounds of his knees, and didn’t see anything wrong. Every time I took my son to the doctor, there would be a suggestion that we try something else to determine the cause of my son’s symptoms, but no doctor suggested having his thyroid levels tested. There was a time that I was taking him to the doctor weekly. Honestly, there were even moments were I began to question whether my son was genuine in his description of what was going on. As his mother, I feel terrible that I let this frustrating process allow those feelings of doubt about my own son to even enter my head.
Getting him to school on time became increasingly hard as the days/weeks/months went by. One day, he refused to walk at all. I knew something wasn’t right then. This was in March. I had something that I had to do that day that I couldn’t get out of, but the next available day I took him back to the doctor. I even had my husband come with me, because I couldn’t help him move around. The doctor who we normally see was out of the office that day, but I figured this was urgent (as he was refusing to walk and all) and so I took him to see someone else in the practice. Thankfully, he knew about his case and I didn’t have to start over with him. He decided to check his hips because they had looked at just about every angle with his knees, and because hip pain can radiate to the knees. That is where the issue was found. After months of tests and a simple X-ray, we discovered the cause. He had developed something called an SCFE, pronounced “skiffy” but otherwise called slipped capital femoral epiphysis. Basically, what this means is the growth plate on the top of the femur had slipped out of its socket. He was then referred to the emergency room, and they would take care of it there since he needed surgery to put his growth plates back in place. He had surgery only a few hours later.
The reason I started with this story is because this condition is very common in kids with a severe case of hypothyroidism. The hospital checked him for thyroid issues after he was checked in because of our family history. I was surprised that I didn’t have to fight for this one, like I did for his sister’s test when she was 5. His thyroid levels were so far out of the normal range that they started him on thyroid hormones before he even left the hospital. I pulled his current growth and weight for the last few years and showed them to his pediatric endocrinologist. She looked them over and determined that he had been hypothyroid for at least three years. She said children should be growing at least 2 inches a year and he hadn’t been. He was ten years old when this all happened.
I was devastated because I missed it when it was right under my nose and even more upset that our doctor had missed this too. I always thought that if he wasn’t growing enough the doctor would say something. I was wrong. I was so worried about my daughter’s diagnosis and treatment that I was blowing off my son’s symptoms and sadly it didn’t even occur to me at the time. Aside from his lack of growth, his main symptoms were migraines and dry skin. I’ve been told that lack of growth (also referred to as growth failure) can often be the only symptom in children. He was good about taking his medication in the beginning, but he has started to slack a bit, so I am having to remind him to take it recently. My main worry with him will be whether he will have lasting consequences from this surgery (there is a chance he will need additional surgery at a later date) and whether he will reach his maximum height. Sadly, only time will tell if my worries are all in my head, but as long as I keep up on his lab work he should be fine.
Since this has occurred in both my children, I have become outspoken about hypothyroidism in children. Despite what some doctors have told me, that “it’s rare for children to become hypothyroid”, my kids’ endocrinologist says they are all wrong, it can occur at any age and it’s not as rare as primary care doctors would like you to think. I’m here to tell you that out of my two children, 100 percent of my kids got it. Does that sound like a rare thing? It is not rare. I’m not the only mom/wife with this issue. Because I do have a family history of Hashimoto’s as well, I highly suspect my kids have Hashimoto’s and not just hypothyroidism and I plan to have their antibodies checked.
I have learned several things over the years of dealing with thyroid disorders. First, always trust your instincts. If you think something is wrong, keep looking for the answer. Second, be persistent in looking for your answers. Don’t take no for an answer when you know you are right, especially when it comes to your children. Third, don’t be afraid to find another doctor and seek 2nd and 3rd opinions. It’s a partnership, not a dictatorship. Doctors are human too and do make mistakes. The best doctors that I have had listen to me, acknowledge that they are human and take into account my 2 cents. Fourth, learn as much as you can so you can help make the best decision for you and your children based on both your knowledge and that of your doctor. And lastly, it’s better to run a blood test now than to have something go horribly wrong down the line and be in my son’s situation later. So better safe than sorry.
I hope that by sharing my story, you have learned more about hypothyroidism in children and also in adults. I hope that you have learned what symptoms you should be looking for in your own children. I believe that what we went through wasn’t for naught and that by sharing our story, I can help save other children from going through what mine went through.
By Dawn, Guest Blogger for Thyroid Mom
**Note from Blythe aka Thyroid Mom: Now you can understand how genuinely honored I am to share this story from the heart. I am so thankful that Dawn had the courage to share her story with us. Dawn’s experience and her children’s experience was tough for all of them, but they have come out stronger as a family! If you need more resources on children with thyroid disorders you can find them HERE and for children with thyroid disorders, have them check out my Kids Zone. For more information on growth failure, check out the resources available at The MAGIC Foundation.