It Took 28 Years To Diagnose My Hypothyroidism: Here's What I Wish I'd Known

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If you see your doctor annually, you most likely have your thyroid function checked with other routine blood work. And if you were told everything is fine, you probably believed it, right? Well, after reading my story I hope you will think twice—particularly if you are displaying hidden signs of hypothyroidism.

A childhood of antibiotics and sick days

From the time I was an infant I was always sick. Eventually, I was diagnosed with chronic sinusitis and was placed on antibiotics intermittently. At the age of 3, I developed a severe case of pneumonia that lasted for weeks. Eventually, I was referred to an allergist for extensive testing, which showed I had severe environmental allergies. I was then placed on allergy shots indefinitely, but it didn't help. In grade school, I was absent so frequently that my classmates used to say, "Rachel's here." I spent many of my nights in the ER, as I also developed severe asthma.

Once I entered high school, I was placed on antibiotics prophylactically. As a high-school freshman, I missed over 50 days of school. Eventually I was referred to a hematologist for further testing and was diagnosed with congenital neutropenia—which the doctor said made me more susceptible to infection—but he had no solution for treating it.

The diagnoses and doctor visits were never-ending.

If this wasn't enough I also developed amenorrhea, which led to more visits to a whole new line of doctors. I had ultrasounds of my ovaries, MRIs of my pituitary, and more tests. Everything was supposedly fine, so I was placed on female hormones, which made me even sicker.

Once I entered college, my health still remained compromised. I was on allergy shots and suffered endless bouts of the flu and sinus infections. I had to stop hormone replacement therapy, as the side effects (particularly migraines) became too overwhelming. Post-college, I began experiencing higher levels of fatigue, extreme coldness, excessive thirst and urination (I was drinking over two gallons of water a day), and osteopenia. I began seeing even more doctors. For the excessive thirst and urination, I was told this was purely psychosomatic because all tests were normal. For the lack of menstruation and worsening osteopenia, the doctors simply advised I remain on female hormones, despite the unpleasant side effects. For the coldness and fatigue—the doctors had no answers.

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Eventually, I refused to take no for an answer.

Long story short, they were ALL wrong. In total, I saw at least 16 doctors over a span of 28 years from endless specialties. Finally in my mid-20s, I became convinced that I had severe hypothyroidism, but because all my thyroid tests were "normal," I had a difficult time convincing anyone to treat me. Eventually, I was able to convince an endocrinologist to start me on thyroid medication. Within 48 hours of starting Armour, my excessive thirst and urination disappeared, and my coldness ceased. Four months later I began to menstruate.

Here are some things I wish I had known sooner that explain why I suffered for 28 years from lack of thyroid hormones—without a diagnosis or treatment.

1. Undiagnosed hypothyroidism is pretty common.

Many people have hypothyroidism and remain undiagnosed because conventional laboratory tests come out normal.

2. Not all medications work the same for everyone.

Many patients who do not respond well to Levothyroxine respond well to Armour.

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3. My lack of period was hint.

Menstrual disorders and infertility are prevalent among women with hypothyroidism, and it should have been a sign to my doctors.

4. Many people with thyroid problems are sick all the time (like I was).

This is because thyroid disorders impair immune function.

5. My osteopenia was another indicator of an underlying thyroid condition.

Low thyroid hormones are associated with adverse bone development.

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6. Like most parts of your body, your thyroid and kidneys are connected.

And thyroid hormones are necessary for normal kidney function. Hence, the frequent urination.

7. Being cold and tired wasn't in my head.

Cold extremities and fatigue are common symptoms of hypothyroidism.

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