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What it’s like living with hypothyroidism

Avatar By | January 1, 2020
Medically reviewed by Michael L. Davis, MD

When I was 18 years old, I was diagnosed with hypothyroidism—essentially my thyroid wasn’t really working. At the time I was a freshman in college and wasn’t even really sure what a thyroid was. I had the vague sense that it was part of your body, but I didn’t know what it did. And, I thought that thyroid problems were something that only old people dealt with. I didn’t know anyone my age who had a chronic medical condition, who needed to visit the doctor every six months, or who took a daily medication that wasn’t birth control. 

What I didn’t know then, and what my busy health clinic doctor didn’t tell me, was that hypothyroidism is actually extremely common. There are more than 3 million new cases of people living with hypothyroidism every year. I was lucky that I had gone in for an appointment where routine blood work spotted the condition before I ever experienced any of the common symptoms.

What is hypothyroidism? 

Hypothyroidism is a condition when the thyroid gland is unable to make optimum levels of thyroid hormone,” explains Anis Rehman, MD, an assistant professor and endocrinologist at Southern Illinois University – School of Medicine who writes for District Endocrine

What does hypothyroidism feel like?

It may be completely asymptomatic or may present with several non-specific symptoms such as fatigue, cold sensitivity, dry skin, thinning of hair, constipation, weight gain, hoarse voice, muscle aches, and slowed heart rate.”

How is hypothyroidism treated?

Most commonly, “hypothyroidism treatment includes the replacement of thyroid hormone. Levothyroxine is a cheaply available treatment option and is FDA approved,” says Dr. Rehman. 

Like most people living with hypothyroidism, I manage my condition with medication, a replacement thyroid hormone that fills in where my body’s thyroid doesn’t supply. This is the prescription I have taken daily in various doses as prescribed by my doctors for over 17 years. 

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What will happen if hypothyroidism is not treated?

If I left my hypothyroidism untreated, it could cause serious complications, like goiter, heart failure, heart rhythm problems, mental health issues, myxedema coma, infertility, and birth defects.

Finding the right physician

Because I have been asymptomatic since I was first diagnosed, the hardest part of navigating hypothyroidism for me was finding the right doctor. I wanted a physician who treated me as a person, not just as a statistic—one who was LGBTQ-fluent and who wasn’t going to push weight loss. That meant a lot of referrals and interviews with potential doctors before establishing care with them. 

The thyroid is “the barometer of your body; it controls everything from how fast your heart beats to how many bowel movements you have per day,” according to Romy Block, MD, division chief of endocrinology at Northshore University HealthSystem. “The most common reason for hypothyroidism is an autoimmune disease that runs in families—called ‘Hashimoto’s thyroiditis.’ This is when your own body attacks your thyroid and turns it off. The most common treatment is also levothyroxine.” 

It took over a decade of doctor’s visits before the right physician discovered that Hashimoto’s was behind my underactive thyroid. While the name sounds scary, it really hasn’t had any impact on my health or treatment plan. But, it finally explained why my thyroid blood work levels are often out of whack and my dose needs to be adjusted, despite adhering to my treatment regimen.

Living with hypothyroidism

Honestly, hypothyroidism is just a small part of my very full life. I take my medication. I go see my doctor to have blood work done every few months, and I live my very best life! I can’t complain, and I think it’s really important to change the narrative about thyroid conditions. They’re not some awful thing. With proper treatment, you’ll start to feel better quickly. 

If I hadn’t had an annual physical when I was in college, I probably wouldn’t have known I had a thyroid issue. That’s just one example of why it’s so important to establish a primary care physician—and then go get a checkup (no matter your age)! Hypothyroidism, when undiagnosed and untreated, can lead to medical complications. Just make sure to find a healthcare provider who fits your needs and your values. Your physician should see you as a person, not just a disease to be treated or managed.