About a year into our youngest daughter's diagnosis of type 1 diabetes, just when things were starting to balance emotionally and physically, we noticed a few unresolved issues.
Each night at bedtime, our youngest daughter would ask us to rub her legs because she said they hurt. The first thought was the possibility of growing pains. My husband grew about six inches in one year as a child and he remembered feeling achy all over, especially in his legs. This is not hard to imagine as he is now 6'3". Our daughters are quite the opposite and very petite, so it is difficult to imagine growing pains.
We made a note of it on our list of questions for our doctor team and went about the day. Mysteriously, the pain subsided each morning only to return each night. After a solid week, I called our pediatrician who told us to bring her in so that she could have a look.
Not sure herself of what it could be, one idea was the possibility of restless leg syndrome, which is the inability to hold your legs still at night. RLS also can cause joint pain and general soreness. Since our pediatrician wasn't entirely sure, she suggested we mention it to our endocrinologist office. To help facilitate the conversation, she put a note into our virtual chart, which also links to the endo office, so that everyone could be on the same page. Love this feature by the way!
Later that week, I visited my trusted Google search engine and searched all sorts of leg symptoms including leg cramps and muscle aches. One of the search returns landed me in the world of multiple endocrine disorders simply known as Poly glandular Autoimmune Syndrome. PAS is the big name for having more than one autoimmune disease (like Type 1 Diabetes AND thyroid disease). The thyroid is this little tiny, oft forgot butterfly-shaped gland in the neck. The thyroid produces several hormones like T3 and T4 which help oxygen get into your cells, helping to convert that (and calories) into energy. It is often referred to as the Master Gland of the Endocrine system.
With thyroid disease, it appeared that it could be either hyperthyroid - Grave's Disease or hypothyroid - Hashimoto's Disease. The more likely candidate was Hashimoto's as our youngest daughter had many of the symptoms from leg pain, fatigue, sensitivity to cold, brittle hair and the occasional constipation.
The irony is that none of these symptoms amount to much, but together they directly seemed to point as a very serious autoimmune disease. One that left unresolved, could eventually turn into infertility or miscarriage when our youngest daughter was older. For a disease that is most frequently diagnosed in middle aged women, at not quite five years old, she was a very young candidate. While it was possible, it wasn't entirely probable.
At our endocrinologist appointment, we discussed the possibility of either RLS or PAS. Reviewing our recent blood work, our youngest daughter showed no signs of thyroid disease but the team wasn't convinced that it was RLS either. However, because our team is great at looking at the patient and going the extra mile to do what is best, the endo team agreed to re-do our labs.
Three days later, our head endocrinologist called our home. It was 6:00 p.m. and I remember the exact time because I was in the middle of preparing dinner for our family. My husband and daughters were at the neighbor's playing wiffleball and I was alone in our home.
"Amy, I have something to tell you but I think you already know", said our doctor. He paused and said, "It is Hashimoto's."
When you take a phone call like that, your world seems to pause. The same effect that I had when hearing her diagnosis of Type 1 Diabetes happened for a second time. Everything is blurry and yet hyper-focused all at once. It is extreme tunnel-vision.
I calmly asked for the script information and listened to the details of when and how she would start on her hormone replacement. I asked about storage and re-testing. Then, I hung up the phone, sat on the couch and felt tears roll down my cheeks.
Another diagnosis.
Some time passed and I call my husband, asking him to come home without our daughters, so that we can discuss it first before telling them.
And he said, "Hashimoto Who?"
Which really, is the best way to end this story. Aside from the numerous blood draws, one every six weeks during dose changes, 2 per year when things are going smoothly, Hashimotos barely interferes with our life. One tiny white pill each morning about an hour before breakfast. That's it.
Now we all say, "Hashimoto Who?"
