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Born With Congenital Hypothyroidism In 1968 – Still Suffering

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Born-With-Congenital-Hypothyroidism-In-1968-Still-SufferingLisa Houk, Thyroid Thrivers
Thyroid Nation


45 years old

Wisconsin, USA
Congenital hypothyroidism
Diagnosed in 1968

My name is Lisa and I was born without a thyroid gland, lucky me! My diagnosis of congenital hypothyroidism was confirmed at St. Mary’s, in Madison, Wisconsin in 1968.

My parents noticed after one week, that I was losing weight . My large tongue was causing me to be unable to eat. I had no problem sleeping, in fact, I slept all the time, which worried them. Not like most parents who are glad when their newborn sleeps, my sleeping was not normal, and they could sense something was wrong. Not to mention, I didn’t hardly move. They were scared.

My smart grandmother told my mom to take me to the hospital immediately.  Luckily, there was a young intern learning about the thyroid. He looked at me, as many doctors did that day, and determined I did not have a thyroid.

Upon this discovery, I was put on medication.  To this day, I am still taking 200 mcg. of levothyroxine.

The problem with this is, I don’t have a thyroid, congenital hypothyroidism, despite that fact, I am currently having a lot of thyroid related health issues.  For one, I believe I’m in the early stages of menopause. Can this be? That is very disheartening, discouraging and frustrating, to say the least, as I am still young.

I’m desperately searching for a good doctor that can help me. I have been ignored one too many times. All the doctors I’ve seen, have dismissed me and it has to stop. My health is at stake. Someone needs to HEAR me!  A few of the doctors have cared about me and my well-being, but don’t know or understand enough to do anything to help me. They certainly don’t know enough about congenital hypothyroidism to make a difference in how terrible I am feeling.

Vitamin D supplements are part of my daily routine and I know I need to incorporate others. There is just so much information out there, that it gets overwhelming and I’m not sure what to take and what to stay away from.

At last, I finally have insurance. I am currently looking and searching for a great doctor and am open to suggestions. (hint!) I need a wonderful, caring person that will look at me as a whole and not just my lab tests.

Thank you for reading this and I hope anyone out there who has thyroid/congenital hypothyroidism/autoimmune disease, gets the help they need and deserve. We are all in this together.


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3 Comments

  1. Thyroidless Barb on

    Patient experiences (clinical outcomes) and 21st century medical SCIENCE have proven that the T3 converted from T4 is NOT enough!!! Ingesting T4-only meds for decades CAUSES reverse T3 and, according to eaware.org, from Thyroid and RT3 under Thyroid (and according to my experience), the ONLY way to clear your RT3 is with a T3-only med, taken in multiple doses per day at a replacement level, not a supplemental level. In order to do this, YOU must learn how a healthy thyroid works, then be your own thyroid from the outside in. IF you have antibodies, you may not do well on an NDT, but the “science” is still out on it. Since an NDT is 80% (if not more) T4 and RT3 can only be made from T4, you still need to clear your RT3 with a T3-only (synthetic) med. I wish you much education, because doctors who understand are few and far between!

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