Chat about Congenital Hypothyroidism Symptoms follow up

What does it feel like to be “off”?  A follow-up Q &A with my oldest son about his Congenital Hypothyroidism Symptoms

Recently, a reader asked me if my son could help articulate what “off” feels like using feeling words like tired, achy, etc. to help her better understand what her child was experiencing.  In other words, better describe the symptoms of congenital hypothyroidism.  Interestingly, her question coincided with a period of him being “off”.  We noticed that he seemed to be more tearful and have more difficultly sleeping.  Both boys have an appointment coming up with their pediatric endocrinologist and so just had their thyroid levels (TSH, FT4, & T4) checked.  The results revealed that my oldest (the one interviewed) is hypothyroid.  I wasn’t surprised.

I asked my oldest son about feeling “off” with regard to congenital hypothyroidism and asked him to use some descriptive words.  He wasn’t really able to articulate it that well in the sense of feeling words, which I find typical of thyroid disease sufferers.  It’s hard to explain other than you just don’t feel like yourself.  But, after some gentle prodding (he is a 7-year-old boy, so feelings aren’t his favorite subject), he began to talk about how he’s been feeling over the last few weeks.  He said that he gets a little crazy feeling (picture his silly face here because he was making a silly grin when he said that).  He cries over things he knows aren’t a big deal.  He says he feels sad and doesn’t know why.  He said he knows he can get over dramatic, but can’t help it.   He said the biggest thing he notices is that he’s tired and sleepy even when he’s had enough sleep. He also said he has trouble concentrating at school and focusing. He said he knows sometimes he is thinking about something and then realizes he hasn’t been paying attention.   So, these aren’t necessarily feeling words, but hopefully it can help parents of children with thyroid disorders understand how their children may feel when their thyroid levels are off.

I have to admit that this is the most difficult thing for me to deal with as a parent of children with congenital hypothyroidism. I feel like I know how to deal with the doctor appointments, the blood draws and the daily medications (most days, anyway), but the constant wondering if what is going on is just their personalities, them getting sick, them being a normal kid, something more serious bothering them (like school stuff) or if their thyroid levels are off.   I don’t worry about it as much now as I did in the beginning, particularly now that I have one who is old enough to start telling me what’s going on (or have a sense that things aren’t right).  But, I still worry about it a lot.  I count myself lucky in some ways that I have Hashimoto’s Thyroiditis, because I can identify with the feeling that things aren’t right.  I’m able to recognize the symptoms of hypothyroidism and hyperthyroidism.  At the same time, I think maybe I worry more because of what I do know and have experienced.

I hate that my children have to go through this, though.  I’m not going to lie.  I really don’t like it.  I know that there are much worse things that they could have to deal with, and I’m so very thankful that they have the most benign of endocrine disorders and that there is medication that can help them.  I hope that dealing with hypothyroidism from birth will eventually lead to them being more aware of their bodies and in control of their own health at younger ages.  I’m sure reading my blog you will see cycles of my own thoughts and feelings on this disease.  I’m only normal.  There are days when I am at peace with this and there are days that I’m not.   For the most part, my boys are fine.  They are happy, healthy, and smart little boys.  But, hearing my 7-year-old son talk about feeling overwhelmingly tired and feeling sad and not knowing why makes me sad.  Really sad.  Heart hurting sad.  I know that they are symptoms of him being hypothyroid and that we will soon be increasing his medication and hopefully those feelings go away.  It is tough enough to deal with those feelings as adults with thyroid disorders, but to be 3 years old or 7 years old and feel those things must be much harder.   For any parents feeling the same way today, I’m with you.  Together, we support each other.  Together, we raise awareness and hopefully lead to more research and more resources for our children.

By Blythe Clifford