Congenital Hypothyroidism: Born Without A Thyroid – My Story

Thank you for visiting my site! I hope I can offer help and encouragement in your or someone you love’s journey through life with congenital hypothyroidism or the loss of this important little gland later in life.  I’ll begin with my own story.

I was born in June of 1977 in Dallas County, Texas.  My mother had carried me 10 months – I was supposed to be born May 18th, but I made it all the way to June 21st. She had normal thyroid function, as far as I know. I was 8 lbs. 9 oz. and otherwise healthy, but after a few weeks, my grandmother (Grandma Lee), who was a nurse, knew that something was wrong. She was very concerned but did not say anything to my parents, as they were already trying to figure out if something was wrong.  For instance, my navel would not heal. (Read about more symptoms of congenital hypothyroidism here).

 

A Little History

I regret that I do not know the doctor’s name who diagnosed me with congenital hypothyroidism (edit: Dr. Richard Bates), but he saved my life and likely many others. The story I was told (I have not been able to find a way to verify it, for the sake of full disclosure), is that the doctor who diagnosed me went to the Texas State Legislature and worked to make it a law that all children born in Texas should be tested for congenital hypothyroidism. It has become a nationwide law.

Congenital hypothyroidism is one of the most common and preventable causes of intellectual disability. Because most newborns show no signs of it, the condition is usually detected during routine newborn screening, which is mandatory at U.S. hospitals. The newborn screen, which is collected by gathering blood via heel prick 24 hours after birth, checks for congenital hypothyroidism and a number of other congenital diseases.
EndocrineWeb.com

By law, all newborns are screened in the first few days of life for serious diseases. The testing is done with a few drops of blood taken from the baby’s heel. One of the tests is for thyroid function. The blood is tested for amounts of hormones from the thyroid. It’s also tested for amounts of hormones that tell the thyroid to make more hormones. Your baby’s healthcare provider may also advise an imaging test of the thyroid gland.
University of Rochester Medical Center

Medication

After my diagnosis of congenital hypothyroidism, I was started on Synthroid, synthetic thyroid hormone, and I will require this medication daily for the rest of my life. I have tried the generic version – Levothyroxine – but on it, I am incredibly tired all the time. It is my understanding that Synthroid is a time-release formula, and I seem to function very well on it.  It’s a little pricier than the generic, but it is worth it to me.  Runs about $30.00 – $35.00 without insurance.

Being born without a thyroid is a very different thing than having a malfunctioning thyroid. I don’t have the insane ups and downs and severe struggles that people with Graves Disease and Hashimoto’s have. It is easier to regulate medication, identify changes in physical and mental symptoms, and to live with overall. I have great sympathy for people who are on the thyroid hormone roller-coaster and their loved ones.

That is not to say that living without a thyroid is easy. In my next few blog posts, I will discuss my history more in depth and how the long-term destruction caused by a violent auto accident in 1984 nearly killed me five years later and changed my life forever.

Stay healthy and safe!
Laura

Born Without A Thyroid - Texas Cottontail

3 thoughts on “Congenital Hypothyroidism: Born Without A Thyroid – My Story”

  1. Thanks for sharing such an educative post, I have been on a research congenital for some time now, my findings were,  Congenital hypothyroidism affects an estimated 1 in 2,000 to 4,000 newborns. For reasons that remain unclear, congenital hypothyroidism affects more than twice as many females as males.

    Thanks for the more enlightement.

    Reply
  2. This is a very informative blog. I have not, in my 78 years of life, heard of not having a thyroid, let alone spelling the medical condition. And further, it is far more prevalent in females. It is sad for you it was not discovered right away and an alert grandmother brought this forward. At least, there is a medicine that can help but obviously, not cure. Your blog has brought to light through this format, something I am sure, few people know about and those that have new born babies need to have this checked. Keep your blog going. You need to be heard!!
    Dwayne Scheer

    Reply
    • Thank you, Dwayne!  I appreciate your comments, and I will keep the blog going.  I am very glad there is a medication!  I wouldn’t have survived more than a few months, probably.  I learned today that medication for hypothyroidism has been around for fewer than 150 years!  

      Reply

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