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When You’re Born Without a Thyroid Gland

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I have lived 42 years without knowing what it feels like to be “normal” or live free from chronic tiredness. For most of my life I have always slept more than 12 to 14 hours a day. Even with eight hours of sleep, I have always needed more rest and had to nap for a further four to five hours.

When I reached the age of 20, I finally realized feeling as tired as I did was not normal and that something was wrong. I didn’t realize hypothyroidism, or an underactive thyroid gland, was causing this problem for me.

I was born without a thyroid. As a newborn I was constantly sleeping and not feeding. My father was in the British army and had access to specialist health facilities. At 3 days old, my dad took me to see the army medical staff on base, where they discovered I had no thyroid gland. The doctors prescribed me on a medication straight away, and this helped manage my symptoms until more tests could be done. Back then, my illness was relatively new and unknown.

As the years progressed, my medication went up and down. Then I was told my condition was stable. My health improved for four to five years, and I was discharged from my specialist. I started to feel unwell again at age 25 and started to research and learn more about my illness.

I found out how the thyroid system works. I have had a number of symptoms most of my life. It wasn’t until my early adulthood that I realized these were actually due to my hypothyroidism. The symptoms of hypothyroidism can include:

  • Tiredness and fatigue
  • Difficulty concentrating
  • Dry skin and hair
  • Sore muscles

Since the age of 25, my health has gone downhill. I became so used to it that I accepted this was the way I was supposed to be for the rest of my life. I have always gone to my general practitioner and asked to be referred back to an endocrinologist, and I have always been declined.

I am now 42, and about two years ago, after I got married, I attempted to try and get help to improve my thyroid problems. For two years I was ignored and the doctor would not listen. I finally moved counties with my wife and found a new general practitioner. The doctors have tested my hormone levels and realized there is a serious problem; however, they are again experimenting and trying to sort it out without sending me to see a specialist.

I feel frustrated and have decided to go down the private route. I may have to pay myself, but if I can see a specialist to help stabilize my thyroid, I will be happy. It’s not easy having a chronic illness where medical staff won’t listen or help the way they are supposed to.

I’m left feeling so tired I can barely function each day and carry out normal daily tasks. I’ll never know what it is like to feel healthy. At the moment, my hormones are unstable, and I’m not going to quit and take no for an answer this time. I’ll stand up for myself and fight to receive the treatment I deserve. Hypothyroidism is not an easy illness to live with, and I’m going to fight to get the best care I can to allow me to function better as an individual, husband and father.

Editor’s note: This is based on one person’s experiences and should not be taken as medical advice. Consult a doctor or medical professional for any questions or concerns you have.

Follow John at Mr. Geek & Gadgets.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: January 27, 2016
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