Although thyroid disease is common, affecting nearly 12 percent of people in the U.S., many people don’t understand the reality of what it’s like to live with a thyroid condition.

Hurtful misconceptions about thyroid disease still perpetuate, as some believe it’s “not that bad,” only affects the thyroid or can always be easily “fixed” with medication. Others may simply be unaware of the different types of thyroid disease and all the symptoms and side effects thyroid conditions can cause. In fact, it’s estimated that up to 60 percent of people with thyroid disease don’t realize they have it. That’s why it’s so important to raise awareness and promote better understanding of the many ways thyroid disease can manifest.

The thyroid is a small, butterfly-shaped gland in the lower neck. As part of the endocrine system, it produces hormones that help regulate metabolism and autonomic bodily functions, affecting every tissue, organ and system in the human body. Any dysfunction of the thyroid gland falls under the umbrella of thyroid disease.

Hypothyroidism (underactive thyroid disease) occurs when the thyroid doesn’t produce enough thyroid hormone. This slows the body’s processes and metabolism, resulting in symptoms such as weight gain, depression and fatigue. Causes of hypothyroidism may include Hashimoto’s thyroiditis (an autoimmune condition), medications, radiation therapy or thyroid surgery.

Hyperthyroidism (overactive thyroid disease) occurs when the thyroid produces too much thyroid hormone. This accelerates the body’s metabolism, causing symptoms such as increased heart rate, weight loss and tremors. Hyperthyroidism has several possible causes, including Graves’ disease (an autoimmune condition), hyperfunctioning thyroid nodules and thyroiditis.

Thyroid nodules are small lumps that form in your thyroid. The majority are not serious and do not cause any symptoms. Some can become large enough to cause symptoms such as difficulty breathing or swallowing, while others may secrete extra hormones, causing symptoms of hyperthyroidism.

Goiter is the abnormal enlargement of your thyroid gland. It can occur for a number of reasons, including hypothyroidism, hyperthyroidism, nodule growth, thyroid cancer, pregnancy or inflammation.

There are several types of thyroid cancer, though it is considered relatively rare. Thyroid cancer can cause changes to your voice, difficulty swallowing, pain in your neck and throat, and a lump that can be felt on your neck. Most cases can be cured with treatment.

Whatever type of thyroid condition you have, know your symptoms are valid, and there is a community here that understands any struggles you may be facing.

To help raise awareness of some lesser-known thyroid symptoms and remind anyone struggling that they’re not alone, The Mighty teamed up with The National Academy of Hypothyroidism (NAH). We asked our Mighty community and the NAH community to share a surprising symptom of thyroid disease and what it’s like to experience it.

Here’s what our communities shared with us:

1. Throat Tightness

Thyroid disease can cause feelings of tightness or discomfort in the throat for several reasons. Different types of thyroiditis (inflammation of the thyroid gland) may cause pain or swelling in the gland, depending on the presentation of the specific condition.

Goiter, or abnormal enlargement of the thyroid gland, is known to cause throat tightness as well as cough, difficulty breathing or swallowing, hoarseness and swelling in the front of the throat or neck. Goiters can be caused by a few different factors, including Hashimoto’s thyroiditis (hypothyroidism) and Graves’ disease (hyperthyroidism).

Tightness and pain around my thyroid when I’m exercising, upset or stressed. It makes it hard to breathe and difficult to swallow. It also makes my voice sound strained when I’m talking to people. Although I now know this is a symptom of thyroid disease caused by inflammation, it didn’t come up at all when I first started doing research on thyroid disease. – Jessica M.

Tightness in throat quite frequently (not sore just tight, like I’m being strangled. It’s an awful feeling)! – Victoria B.

2. Hair Loss

People with prolonged and severe hypothyroidism or hyperthyroidism may experience hair loss that typically occurs evenly across the entire scalp. Much of the hair may grow back with proper treatment of the disease. It’s also possible to experience hair loss as the result of taking medications to treat your thyroid disease, though this is rare.

Little or no eyebrows when hypothyroid. – Theresa H.

Excessive hair loss. – Stephanie L.

3. Anxiety/Panic Attacks

Anxiety can be a symptom of thyroid disease, particularly hyperthyroidism. The thyroid gland is responsible for producing T3 and T4 hormones, which help regulate many of the body’s automatic functions, such as heart rate and digestion. When the thyroid is overactive, it can cause symptoms such as increased heart rate, high blood pressure, heart palpitations, insomnia and reduced appetite – which are also common symptoms of anxiety. If you’re experiencing these symptoms, it’s important to talk to your doctor to determine their root cause.

Anxiety. I have been told it will go away when my levels are right. They haven’t been right in three years. I’ve panicked driving over a bridge so bad, I didn’t know if I was going to be able to drive all the way across. It was terrifying and embarrassing. – Kelly S.

Panic attacks! Before I was diagnosed they would just come from nowhere. I honestly thought I was going to die or that something was really wrong with me. I still suffer with anxiety now, especially around the time of menstruation. I can feel my hormones changing. – Diane B.

4. Fatigue

Fatigue is one of the most common symptoms associated with hypothyroidism – and it involves a lot more than feeling “a bit tired.” Fatigue is sleep that doesn’t make you feel refreshed when you wake up. You won’t feel better even with 10 or more hours of sleep because you’re not getting deep sleep. This can make it difficult to do everyday activities because you don’t have the energy.

The bone crushing fatigue. I know fatigue is one of the first listed symptoms, but I never knew how severe it could get until I experienced it myself. That it was possible to fall asleep while walking to college. That I could regularly fall asleep mid sentence while talking. How it became impossible to stay awake through lectures. The tiredness scared me, it was so demanding. Still it took another two years after this to get diagnosed, kept being told I was depressed, and that was making me tired. – Heike K.

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