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The Challenges of Being a Teenager With Undiagnosed Hashimoto's Thyroiditis

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Ever since I can remember I’ve been tired. I can’t pinpoint when it started, but it was always there.

Things got really bad in high school. I had such a rough time in middle school with making friends and being accepted that I decided I was going to make high school amazing. I joined clubs and sports teams and starting making friends with a bunch of new people. I picked up my first after-school job that year as well. This was all on top of mostly honors classes, so I was exhausted.

I think I got more exhausted as each year of high school passed.

By my senior year I was in leadership roles in three clubs and taking a few AP classes and a few community college classes while also working two part-time jobs. I had to skip out on everything at least two or three times a month and just sleep all day long. I would sleep for 20 hours and barely wake up when my parents would violently shake me awake. Everyone – my parents, friends, doctor – thought I had just spread myself a little too thin. But other kids could do it. Why couldn’t I?

I struggled through this exhaustion silently after a while. I was told it was normal, I was just a teenager and teenagers sleep a lot, so I tried to ignore it. Little did I know all of the other strange things I was experiencing – anxiety, weight gain, aches and pains everywhere and the worst periods of my life (to name a few) – were all connected.

I didn’t get to be a teenager in the way everyone else did. When I tried to do what others could, I always fell short. I still dated and went to parties and did dumb teenage things, but it always took me much longer to recover.

I had to literally will myself to get out of bed every morning at 6 a.m. to get ready for school. I was often late because I just couldn’t manage to get out of bed.

I was irritable to the point of hurting those closest to me on a near daily basis.

I was running and dieting and not losing any weight.

My once thick hair was beginning to thin.

I annoyed my classmates by constantly cracking and popping every joint in my body because they hurt so badly.

I looked strange for wearing sweaters in the summertime in Tennessee, but I knew if I went anywhere with air conditioning I would freeze.

I would go to parties and fall asleep before midnight because I just couldn’t keep my eyes open.

My friends thought I was just being a jerk for canceling on them when I felt so tired or so anxious I just couldn’t leave my house.

I was told I was depressed, but I didn’t really feel sad. Helpless, yes, but not sad.

I felt as if I was living like a grandma when I was just 16 years old.

And the kicker is, I thought it was all in my head.

Before going off to college I had to get some blood work done. I convinced my doctor to run a full panel and test me for everything. I told him something was wrong. I had no idea what, but it was something. It was the first time I stood up for myself with all of this and it felt amazing.

I got a call from my doctor’s office that night when he was running labs asking me to come back in right when they opened the next day. My thyroid levels were off the chart. Nowadays I would have to go back and look through a lot of paperwork to see what all of my levels were at, but I do remember my TSH (thyroid-stimulating hormone) level. TSH is sent from the pituitary gland to the thyroid, telling it to produce T3 and T4. The normal range for TSH is between .03 and 3.00, and my levels were at 375, 100 to 300 times the normal amount. My levels being so high meant I wasn’t producing enough thyroid hormones, which is a disease called hypothyroidism.

I then spent the next year of my life on a roller coaster trying to find the right dosage.

I was told time and time again about this crazy thing called Hashimoto’s thyroiditis and how it typically causes hypothyroidism, but I never had a doctor suggest I get tested. I was told it wasn’t worth it, that knowing you have an autoimmune disease doesn’t matter because there is nothing you can do to fix it. It didn’t matter that I was still experiencing so many other symptoms, as long as my TSH level was in the normal range. I had to fight to get tested, and finally I found an amazing holistic doctor who ordered the tests and diagnosed me.

I think the hardest thing with all of this has been that fighting. I had so many nurses and doctors pat me on my head when I tried to explain to them the severity of my hypothyroidism, but I was never really overweight and if you have a bad thyroid problem you must be obese, right? I had to learn, at a very young age, to stand up for myself against adults who should have known better. I realized a long time ago that just because someone is in a power position does not mean I have to listen to them.

I think that is the best thing my disease has taught me – to never back down and to always trust myself.

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Originally published: November 9, 2016
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