What’s the Difference Between Hypothyroidism and Hyperthyroidism?

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This article was originally published by the US News on April 19, 2019 here.

The two conditions have similar-sounding names but are actually quite different.

IN THE WORLD OF medicine, many conditions have names that may seem unfamiliar to English speakers. Some of these diseases have names borrowed from other languages, and Greek is a usual suspect when it comes to terms that may not be immediately recognizable to many of us.

This is true for two common medical conditions that have to do with the thyroid gland. The terms hypothyroidism and hyperthyroidism describe two problems that can arise in the thyroid gland – a small, butterfly-shaped structure in the neck that produces hormones that regulate a wide range of bodily functions. At first glance, these words may seem identical. But a tiny change in a couple letters alters the meaning of the two terms substantially, referring to two different conditions.

What Is Hypothyroidism?

In Greek, “‘hypo’ means low or below normal,” says Dr. Joseph Wanski, an endocrinologist with L.A. Care Health Plan in Los Angeles. “Hypothyroidism defines the clinical condition of low or underactive laboratory levels of the thyroid hormone because the thyroid gland does not make enough” of the hormones that the body requires.

These hormones are important because they’re involved with all sorts of bodily functions from how the heart works to how fast your metabolism runs. “The thyroid gland in the neck manufactures a protein called thyroid hormone, which is crucial to the day-to-day function of every cell in the body,” says Dr. John Duncan, pediatric endocrinologist with Health First Medical Group in Melbourne, Florida. “Without it, all chemical functions within the cell slow down.”

Therefore, the term hypothyroidism is used to describe a state of inadequate levels of thyroid hormone, and it “accounts for the majority of issues people experience with their thyroid gland,” says Dr. Brian Jameson, an endocrinologist with Geisinger in Danville, Pennsylvania. “Hypothyroidism is also known as underactive thyroid. In other words, everything in the body slows down. When levels of two key thyroid hormones, thyroxine (T4) and triiodothyronine (T3) are too low in the blood, people experience symptoms.”

Symptoms associated with hypothyroidism include:

  • Fatigue.
  • Dry skin and hair.
  • Brittle nails.
  • Slowing of bowels or development of constipation.
  • Weight gain.
  • Puffy face.
  • Muscle cramps.
  • Irregular, infrequent or heavier than normal menstrual periods.
  • Forgetfulness.
  • Depression.
  • A hoarse voice.
  • Pain, stiffness or swelling of the joints.
  • Muscle weakness, aches or stiffness.

If hypothyroidism occurs in a child, it can result in short stature. In teenagers, it may cause an “alteration of pubertal characteristics,” Wanski says. Duncan points out that although being overweight is sometimes blamed on so-called glandular issues, AKA hypothyroidism, “not all individuals with excessive weight will be hypothyroid.”

What Is Hyperthyroidism?

At the other end of the thyroid spectrum is hyperthyroidism, in which the thyroid becomes overactive and generates too much thyroid hormone. “Hyperthyroidism is also known as overactive thyroid,” Jameson says. “In other words, everything in the body speeds up. When levels of two key thyroid hormones, thyroxine (T4) and triiodothyronine (T3) are too high in the blood, people experience symptoms.”

This overstimulation of the thyroid gland results in “a massive surplus of thyroid hormone. This accelerates all the chemical functions and all the cells,” Duncan says. This condition can cause a range of symptoms including:

  • Sleeplessness.
  • Rapid heart rate.
  • Heart failure.
  • Weight loss.
  • Tremor.
  • Bulging eyes or a fullness in the front of the neck.
  • More frequent bowel movements.
  • Seizures.
  • Heart disease.

Hyperthyroidism may also cause “an assortment of other undesirable clinical consequences,” Duncan says.

What Causes Hypothyroidism and Hyperthyroidism?

Duncan says that in most cases, these diseases are caused by “aberrant immunity cell function where white blood cells ‘attack’ the thyroid, which triggers under-function or over-function of the gland. However, there are infants who can be born without a thyroid gland (congenital hypothyroidism)” or the thyroid can be underdeveloped or “located in the wrong place,” Jameson adds. With hyperthyroidism, “there are infants who can inherit the immunity proteins and be born with hyperthyroidism,” Duncan says.

With hypothyroidism, “the most common cause is an autoimmune disease called Hashimoto’s thyroiditis,” Jameson says. “This disease causes the immune system to mistakenly attack a healthy thyroid gland. As a result, the thyroid becomes inflamed and is no longer able to make enough thyroid hormones. It may also become enlarged and develop lumps and bumps known as nodules.” Wanski adds that other causes of hypothyroidism include:

  • Radiation to the thyroid.
  • Thyroid surgery.
  • Damage to the pituitary gland, a pea-sized structure behind the nose at the base of the brain that regulates hormones throughout the body.
  • Certain medications.

The National Institute of Diabetes and Digestive and Kidney Disease reports that an autoimmune disorder called “Graves’ disease is the most common cause of hyperthyroidism in the United States. Wanski says other causes of hyperthyroidism include:

  • The development of a nodule or lump (or multiple nodules) in the thyroid gland that begins to produce excess hormone.
  • Certain medications.
  • Viral infections.

Jameson adds that in some cases, thyroid nodules can begin producing hormones when they shouldn’t, a condition called toxic nodular goiter. “Thyroid inflammation, also known as thyroiditis,” may also lead to the development of hyperthyroidism

Who’s Likely to Develop Thyroid Problems?

The American Thyroid Association reports that “more than 12 percent of the U.S. population will develop a thyroid condition during their lifetimes.” And because an “estimated 20 million Americans have some form of thyroid disease,” it may be something you’ll have to deal with at some point.

Although anyone can develop a problem with the thyroid at any age, there are a few risk factors that may make a thyroid issue more likely, including:

  • Being female.
  • Having recently been pregnant.
  • Being 60 or older.
  • Having a family history of thyroid or autoimmune disease.
  • Having a personal history of thyroid problems or surgery.
  • Having an autoimmune disease.

Duncan says problems with the function of the thyroid gland are “far more common in women than men,” ranging from 5 to 8 times more likely to develop in females. “Approximately 5 percent of women will eventually develop a thyroid problem.”

How Are These Conditions Diagnosed?

If hypo- or hyperthyroidism is suspected, your doctor will perform a physical examination and take a thorough medical history. A blood test can determine whether your body’s level of thyroid hormones is in the normal range or too high or too low.

Sometimes, your doctor may find a goiter upon examination. This is the term used to describe an enlarged thyroid, which may be obvious as a lump on the side of your throat. A goiter can be a sign of any issue with the thyroid, including hypo- or hyperthyroidism, cancer or simply a lack of dietary iodine. (Iodine is routinely added to table salt in the U.S. to help ward off this issue.)

If signs of hyperthyroidism are found, your doctor may want to conduct additional tests, including:

  • Radioiodine uptake test, in which a small dose of a radioactive iodine is administered and the amount that’s absorbed by the thyroid is measured.
  • Thyroid scan, in which a radioactive iodine isotope is injected and a camera creates an image of the thyroid once the isotope has been absorbed.
  • Thyroid ultrasound, in which sound waves are used to create an image of the thyroid.

Although your primary care physician may be able to diagnose and manage many thyroid issues, some patients may need to see an endocrinologist – a specialist doctor who focuses on diseases affecting the endocrine system and hormones.

How Are These Conditions Managed?

Both hypo- and hyperthyroidism can be dangerous, and “if left untreated, hypothyroidism can lead to unconsciousness and death,” Wanski says. On the other hand, hyperthyroidism “can cause significant weight loss, infertility, a heart irregularity called atrial fibrillation and double-vision.”

Therefore, it’s important to get appropriate medical care if you have either condition. “If you’re feeling unwell and experience any of the common symptoms of a thyroid problem, talk to your doctor,” Jameson says. “Treatment is relatively simple and can help you get back to feeling like yourself again.”

Depending on which condition you’re dealing with and what’s causing it, you may have a few options for treating it.

“In hypothyroidism, tablets of thyroxine – synthetic thyroid hormone identical to negative thyroid hormone – are administered daily and monitored through blood testing,” Duncan says. These medications restore normal levels of hormones and alleviate many of the symptoms of hypothyroidism.

With hyperthyroidism, the treatment may be somewhat more complicated. “Being multifactorial, hyperthyroidism may require one or more therapies,” Duncan says, but “the goal is to diminish or eliminate the overproduction of thyroid hormone.” Treatment options may include:

  • Anti-thyroid medications. These drugs slow the production of excess amounts of hormones.
  • Beta-blockers. Although usually used to treat high blood pressure, these medications can treat some of the symptoms of hyperthyroidism including tremor, palpitation and rapid heart rate.
  • Radioactive iodine. This approach destroys some or all of the thyroid to stop the overproduction of thyroid hormones.
  • Surgery. A thyroidectomy may be undertaken in certain instances to remove most of the thyroid gland and possibly the parathyroid glands, and Jameson says this approach may be a better option for pregnant women or “people who are unable to tolerate other medical treatments.” This approach will necessitate the use of medications for the rest of your life to replace the hormones that can no longer be manufactured within the body.

The most common treatment for hyperthyroidism tends to be radioactive iodine, which is typically administered as an oral pill, and may only require a single dose to be effective. Iodine is an element that is “essential for proper function of the thyroid gland, which uses it to make the thyroid hormone,” the American Thyroid Association reports. The thyroid absorbs iodine, and if it is radioactive, this can shrink or destroy the gland. This therapy is also sometimes used to treat thyroid cancer.

If the treatment destroys the gland or suppresses the thyroid too much, you may develop hypothyroidism as a side effect, but this can be addressed by medications that replace the loss of needed hormones. Hypothyroidism is generally considered easier to treat than hyperthyroidism.

Regardless of which condition you’re being treated for, it’s important to seek appropriate care, especially if you have other medical conditions, as “those may also be adversely affected by the problem until therapy has been introduced,” Wanski says.

The same is true for hyperthyroidism, which can have significant health consequences if it’s not addressed properly. If it’s “left untreated long enough, it can even cause seizures or severe heart disease,” Duncan says.

Jameson adds that “thyroid cancer is also a concern” in people with thyroid problems, particularly those with hypothyroidism. “Thyroid cancer is relatively common, and about three times as many women get thyroid cancer as men. It generally occurs in the nodular goiter of hypothyroidism but can be seen in people whose glands function properly. It’s rare to see thyroid cancer associated with hyperthyroidism.”

Even though it can happen, Jameson says you shouldn’t panic about developing cancer if you’re diagnosed with a thyroid problem. “Thyroid cancer is a very treatable cancer in most instances, usually with surgical removal of all or part of the thyroid and subsequent radioactive iodine tablets to treat the remaining cancer afterward.”

Signs and Symptoms of Thyroid Cancer

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This resources was originally published by the American Cancer Society here.

Thyroid cancer can cause any of the following signs or symptoms:
  • A lump in the neck, sometimes growing quickly
  • Swelling in the neck
  • Pain in the front of the neck, sometimes going up to the ears
  • Hoarseness or other voice changes that do not go away
  • Trouble swallowing
  • Trouble breathing
  • A constant cough that is not due to a cold

If you have any of these signs or symptoms, talk to your doctor right away. Many of these symptoms can also be caused by non-cancerous conditions or even other cancers of the neck area. Lumps in the thyroid are common and are usually benign. Still, if you have any of these symptoms, it’s important to see your doctor so the cause can be found and treated, if needed.

What Is Thyroid Cancer?

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This resources was originally published by the American Cancer Society here.

Thyroid cancer is a type of cancer that starts in the thyroid gland. Cancer starts when cells begin to grow out of control. (To learn more about how cancers start and spread, see What Is Cancer?)

The thyroid gland makes hormones that help regulate your metabolism, heart rate, blood pressure, and body temperature.

Where thyroid cancer starts

The thyroid gland is in the front part of the neck, below the thyroid cartilage (Adam’s apple). In most people, the thyroid cannot be seen or felt. It is shaped like a butterfly, with 2 lobes — the right lobe and the left lobe — joined by a narrow piece of gland called the isthmus (see picture below).

 

 

The thyroid gland has 2 main types of cells:

  • Follicular cells use iodine from the blood to make thyroid hormones, which help regulate a person’s metabolism. Having too much thyroid hormone (hyperthyroidism) can cause a fast or irregular heartbeat, trouble sleeping, nervousness, hunger, weight loss, and a feeling of being too warm. Having too little hormone (hypothyroidism) causes a person to slow down, feel tired, and gain weight. The amount of thyroid hormone released by the thyroid is regulated by the pituitary gland at the base of the brain, which makes a substance called thyroid-stimulating hormone (TSH).
  • C cells (also called parafollicular cells) make calcitonin, a hormone that helps control how the body uses calcium.

Other, less common cells in the thyroid gland include immune system cells (lymphocytes) and supportive (stromal) cells.

Different cancers develop from each kind of cell. The differences are important because they affect how serious the cancer is and what type of treatment is needed.

Many types of growths and tumors can develop in the thyroid gland. Most of these are benign (non-cancerous) but others are malignant (cancerous), which means they can spread into nearby tissues and to other parts of the body.

Benign thyroid conditions

Thyroid enlargement

Changes in the thyroid gland’s size and shape can often be felt or even seen by patients or by their doctor.

An abnormally large thyroid gland is sometimes called a goiter. Some goiters are diffuse, meaning that the whole gland is large. Other goiters are nodular, meaning that the gland is large and has one or more nodules (bumps) in it. There are many reasons the thyroid gland might be larger than usual, and most of the time it is not cancer. Both diffuse and nodular goiters are usually caused by an imbalance in certain hormones. For example, not getting enough iodine in the diet can cause changes in hormone levels and lead to a goiter.

Thyroid nodules

Lumps or bumps in the thyroid gland are called thyroid nodules. Most thyroid nodules are benign, but about 2 or 3 in 20 are cancerous. Sometimes these nodules make too much thyroid hormone and cause hyperthyroidism. Nodules that produce too much thyroid hormone are almost always benign.

People can develop thyroid nodules at any age, but they occur most commonly in older adults. Fewer than 1 in 10 adults have thyroid nodules that can be felt by a doctor. But when the thyroid is looked at with an ultrasound, many more people are found to have nodules that are too small to feel and most of them are benign.

Most nodules are cysts filled with fluid or with a stored form of thyroid hormone called colloid. Solid nodules have little fluid or colloid and are more likely to be cancerous. Still, most solid nodules are not cancer. Some types of solid nodules, such as hyperplastic nodules and adenomas, have too many cells, but the cells are not cancer cells.

Benign thyroid nodules sometimes can be left alone (not treated) and watched closely as long as they’re not growing or causing symptoms. Others may require some form of treatment.

Types of Thyroid Cancers

The main types of thyroid cancer are:

  • Differentiated (including papillary, follicular and Hürthle cell)
  • Medullary
  • Anaplastic (an aggressive cancer)

Differentiated thyroid cancers

Most thyroid cancers are differentiated cancers. The cells in these cancers look a lot like normal thyroid tissue when seen in the lab. These cancers develop from thyroid follicular cells.

Papillary cancer (also called papillary carcinomas or papillary adenocarcinomas): About 8 out of 10 thyroid cancers are papillary cancers. These cancers tend to grow very slowly and usually develop in only one lobe of the thyroid gland. Even though they grow slowly, papillary cancers often spread to the lymph nodes in the neck. Even when these cancers have spread to the lymph nodes, they can often be treated successfully and are rarely fatal.

There are several subtypes of papillary cancers. Of these, the follicular subtype (also called mixed papillary-follicular variant) is most common. It has the same good outlook (prognosis) as the standard type of papillary cancer when found early, and they are treated the same way. Other subtypes of papillary carcinoma (columnar, tall cell, insular, and diffuse sclerosing) are not as common and tend to grow and spread more quickly.

Follicular cancer (also called follicular carcinoma or follicular adenocarcinoma): Follicular cancer is the next most common type, making up about 1 out of 10 thyroid cancers. It is more common in countries where people don’t get enough iodine in their diet. These cancers usually do not spread to lymph nodes, but they can spread to other parts of the body, such as the lungs or bones. The outlook (prognosis) for follicular cancer is not quite as good as that of papillary cancer, although it is still very good in most cases.

Hürthle (Hurthle) cell cancer (also called oxyphil cell carcinoma): About 3% of thyroid cancers are this type. It is harder to find and to treat.

Medullary thyroid carcinoma

Medullary thyroid cancer (MTC) accounts for about 4% of thyroid cancers. It develops from the C cells of the thyroid gland, which normally make calcitonin, a hormone that helps control the amount of calcium in blood. Sometimes this cancer can spread to lymph nodes, the lungs, or liver even before a thyroid nodule is discovered.

This type of thyroid cancer is more difficult to find and treat, There are 2 types of MTC:

  • Sporadic MTC, which accounts for about 8 out of 10 cases of MTC, is not inherited (meaning it does not run in families). It occurs mostly in older adults and often affects only one thyroid lobe.
  • Familial MTC is inherited and 20% to 25% can occur in each generation of a family. These cancers often develop during childhood or early adulthood and can spread early. Patients usually have cancer in several areas of both lobes. Familial MTC is often linked with an increased risk of other types of tumors. This is described in more detail in Thyroid Cancer Risk Factors.

Anaplastic (undifferentiated) thyroid cancer

Anaplastic carcinoma (also called undifferentiated carcinoma) is a rare form of thyroid cancer, making up about 2% of all thyroid cancers. It is thought to sometimes develop from an existing papillary or follicular cancer. This cancer is called undifferentiated because the cancer cells do not look very much like normal thyroid cells. This cancer often spreads quickly into the neck and to other parts of the body, and is very hard to treat.

Less Common Thyroid Cancers

Less than 4% of cancers found in the thyroid are thyroid lymphomas, thyroid sarcomas, or other rare tumors.

Parathyroid cancer

Behind, but attached to, the thyroid gland are 4 tiny glands called the parathyroids. The parathyroid glands help regulate the body’s calcium levels. Cancers of the parathyroid glands are very rare — there are probably fewer than 100 cases each year in the United States.

Parathyroid cancers are often found because they cause high blood calcium levels. This makes a person tired, weak, and drowsy. It can also make you urinate (pee) a lot, causing dehydration, which can make the weakness and drowsiness worse. Other symptoms include bone pain and fractures, pain from kidney stones, depression, and constipation.

Larger parathyroid cancers may also be found as a nodule near the thyroid. No matter how large the nodule is, the only treatment is to remove it surgically. Parathyroid cancer is much harder to cure than thyroid cancer.

Communicating About Cancer: A Brief Guide to Telling People Who Care

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Getting a cancer diagnosis can easily be the most terrifying, heart-wrenching experiences one has in their lifetime. Everything from different treatment options (if you’re lucky), to financing, and maintaining quality of life suddenly are in full force front and center. It can be hard to know who to turn to if you’re not directed to a support group (of which there are many), and especially how to tell loved ones and co-workers. The choice is yours, of course, in whom you wish to tell and when – there is no right or wrong answer. (However, I and many others have found that having a caregiver to help manage appointments, billing, etc. can help).

Should you choose to tell others, here are some tips that I have read and/or heard from other cancer patients/survivors as well as some I have found personally helpful:

Kids:

  • It depends on the age – using simpler terms with younger kids (8 and under) may be more helpful, while older kids and teens can understand more detail. For example, saying that you’re sick and you’re getting the best care from a team of doctors who really want to help you get better
  • According to the American Cancer Society, children need to know the basics, including:
    • The name of the cancer
    • The specific body part(s) of where it is
    • How it’ll be treated
    • How their own lives will be affected
  • Think of a list of questions ahead of time that you think they may ask and jot down answers, such as how the cancer happened (that it’s not anyone’s fault), if it’s contagious, and/or if it’ll be fatal
  • Make sure that they know you are open to talking about it at any time. You can also perform check-ins with each other to monitor feelings

Family and friends:

  • Select a group of people, including immediate family and close friends
  • Divulge information only you feel comfortable sharing. Maybe it’s the basics, as mentioned above, or more detailed information
  • Prepare for different reactions, including sadness, anger, frustration, depression, anxiety, compassion, and support
  • Also prepare for people to not feel comfortable and feel as if they’re helpless. A cancer diagnosis is a heavy weight to bear, and not everyone will feel like the have the capacity to help as much as they want to
  • As the patient, tell them how you’re looking for support (ex. what are your needs during this time, including physical, emotional, mental). Guiding members of your support system to get your needs met may help them feel more at ease and able to help

Work:

  • Telling a supervisor/manager may be one of the hardest tasks for fear of discrimination
    • However, the Americans with Disabilities Act (ADA), which covers employers with 15 ore more employees, prohibits discrimination based on:
      • Actual disability
      • A perceived history of disability
      • A misperception of current disability
      • History of disability
    • The ADA also:
      • Protects eligible cancer survivors from discrimination in the workplace
      • Requires eligible employers to make “reasonable accommodations” to allow employees to function properly on the job
      • Ensure that employers must treat all employees equally
    • The Family and Medical Leave Act (FMLA) also gives you the right to take time off due to illness without losing your job
      • However, an employee must have worked for his or her employer for at least 12 months, including at least 1,250 hours during the most recent 12 months in order to qualify. The law applies to workers at all government agencies and schools nationwide as well as those at private companies with 50 or more employees within a 75-mile radius
    • The Federal Rehabilitation Act prohibits employers from discriminating against employees because they have cancer
      • However, this act applies only to employees of the federal government, as well as private and public employers who receive public funds

Sources:

Top Resources for Thyroid Cancer

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General Resources, Including Medical Information

Find a Physician

Support Groups

Thyroid Cancer Glossary of Terms

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Thyroid Conditions

Hyperthyroidism – A condition that occurs when the thyroid gland makes more thyroid hormones than the body needs. Thyroid hormones control the way the body uses energy and affect the body’s metabolism. Signs and symptoms include weight loss, fatigue, rapid or irregular heartbeat, sweating, diarrhea, nervousness, mood swings, shaky hands, trouble sleeping, trouble tolerating heat, muscle weakness, and a goiter (an enlarged thyroid gland that may cause the bottom of the neck to look swollen). Also called overactive thyroid.

Hypothyroidism – Too little thyroid hormone. Symptoms include weight gain, constipation, dry skin, and sensitivity to the cold. Also called under active thyroid

Types of Thyroid Cancer

Anaplastic Thyroid Cancer – a rare, aggressive type of thyroid cancer in which the malignant (cancer) cells look very different from normal thyroid cells

Follicular Thyroid Cancer – cancer that forms in follicular cells in the thyroid. It grows slowly and is highly treatable. The cancer cells look and act in some respects like normal thyroid cells

Medullary Thyroid Cancer – cancer that develops in C cells of the thyroid. The C cells make a hormone (calcitonin) that helps maintain a healthy level of calcium in the blood

Papillary Thyroid Cancer – cancer that forms in follicular cells in the thyroid and grows in small finger-like shapes. It is the most common type of thyroid cancer. The cancer cells look and act in some respects like normal thyroid cells. Variants include:

  • Columnar cell
  • Cribiform-Morular
  • Diffuse sclerosing
  • Encapsulated
  • Follicular variant of papillary
  • Hobnail
  • Hürthle cell
  • Insular
  • Macrofollicular
  • Oncocytic
  • Solid/trabecular
  • Spindle cell
  • Tall cell
  • Warthin-Like

Poorly Differentiated Thyroid Cancer – a rare form of thyroid cancer that is often aggressive. It is associated with high risk of cancer recurrence, spread to lung and/or bones and increased risk of death. Patients are often treated with a combination of surgery, radioactive iodine and/or radiation therapy and possibly newer, molecular targeted therapies

Thyroid Cancer Terms to Know

Adenocarcinoma – Cancer that begins in glandular cells. Glandular cells are found in tissue that lines certain internal organs and makes and releases substances in the body, such as mucus, digestive juices, or other fluids

Advanced – Has spread to other places in the body; far along in course

Benign – Not cancerous. Benign tumors may grow larger but do not spread to other parts of the body. Also called non-malignant

Lobe – a portion of an organ (ex. thyroid)

Lobectomy – surgery to remove a whole lobe (section) of an organ (ex. thyroid)

Locally Advanced – has spread to nearby tissues or lymph nodes

Malignant – Cancerous. Malignant cells can invade and destroy nearby tissue and spread to other parts of the body

Metastatic – spread of cancer from the primary site (place where it started) to other places in the body

Neoplasm – An abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Neoplasms may be benign (not cancer), or malignant (cancer). Also called tumor

Nodule – A growth or lump that may be malignant (cancer) or benign (not cancer)

Partial Lobectomy – surgery to remove a whole organ (ex. thyroid)

Radioactive Iodine – a radioactive form of iodine, often used for imaging tests or to treat an overactive thyroid, thyroid cancer, and certain other cancers. For imaging tests, the patient takes a small dose of radioactive iodine that collects in thyroid cells and certain kinds of tumors and can be detected by a scanner. To treat thyroid cancer, the patient takes a large dose of radioactive iodine, which kills thyroid cells. Radioactive iodine is given by mouth as a liquid or in capsules, by infusion, or sealed in seeds, which are placed in or near the tumor to kill cancer cells

Recurrent – Cancer that has recurred (come back), usually after a period of time during which the cancer could not be detected. The cancer may come back to the same place as the original (primary) tumor or to another place in the body. Also called recurrence and relapse

Refractory – Cancer that does not respond to treatment. The cancer may be resistant at the beginning of treatment or it may become resistant during treatment. Also called resistant cancer

Risk – patients with differentiated thyroid cancer (papillary or follicular) have different levels of risk of a recurrence or of persistent disease

  • Low Risk of recurrence or persistent disease means: no cancer in nearby tissue or outside the thyroid bed other than 5 or fewer small involved lymph nodes (under 0.2 centimeters), and cancer that is not one of the variants.
  • Intermediate Risk (Medium Risk) means some tumor in nearby neck tissue at the time of surgery, more than 5 lymph node metastases 0.2 to 3 centimeters in size, or a tumor that’s a variant or has vascular invasion
  • High Risk means extensive tumor outside the thyroid, distant metastases, incomplete tumor removal, or a cancerous lymph node over 3 centimeters in size.

T3 – also called triiodothyronine; a type of thyroid hormone

T4 – also called thyroxin and thyroxine; a hormone that is made by the thyroid gland and contains iodine. T4 increases the rate of chemical reactions in cells and helps control growth and development. T4 can also be made in the laboratory and is used to treat thyroid disorders

Thyroglobulin – the form that thyroid hormone takes when stored in the cells of the thyroid. Doctors measure thyroglobulin level in blood to detect thyroid cancer cells that remain in the body after treatment. If the thyroid has been removed, thyroglobulin should not show up on a blood test. Some patients produce anti-thyroglobulin antibodies, which are not harmful but which mask the reliability of the thyroglobulin value

Thyroid Gland – a gland located beneath the larynx (voice box) that makes thyroid hormone and calcitonin. The thyroid helps regulate growth and metabolism. Also called thyroid gland

Thyroid Gland Squamous Cell Carcinoma – A rapidly growing primary carcinoma of the thyroid gland composed of malignant squamous cells (cells are found in the tissues that form the surface of the skin, the passages of the respiratory and digestive tracts, and the lining of the hollow organs of the body). The clinical course is usually aggressive

Stage – The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer, and whether the cancer has spread from the original site to other parts of the body

Unresectable – Unable to be removed with surgery

Sources:

ncithesaurus.nci.nih.gov

cancer.gov

thyca.org

thyroid.org

Thyroid Cancer Empowerment Lead

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The drip-drip-dripping of the sink in the radiology room echoed loudly in my brain as I waited for the pathologist. I just had a biopsy done for two spots on my neck—one suspected to be cancerous. “A nodule,” my primary care physician had previously explained at my annual physical. The radiologist had comforted me, casually saying, “I wouldn’t worry, though. There’s only a ten to fifteen percent chance.”

In just a few minutes, I would be given my fate.

In January 2017, I was diagnosed with thyroid cancer. I met my surgeon five months later. “What you have is called a papillarycarcinoma,” he said. “Doesn’t cancer come from tumors?” I thought. I looked up some terms in the National Cancer Institute’s Dictionary of Cancer

  • Nodule – A growth or lump that may be malignant (cancer) or benign (not cancer)
  • Carcinoma – cancer that begins in the skin or in tissues that line or cover internal organs
  • Tumor – an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumors may be benign (not cancer) or malignant (cancer). Also called neoplasm.

The dictionary helped, but why weren’t these words explained to me by the doctors? It sounded like all the terms were being used interchangeably, and my brain was already feeling corrupted by the diagnosis—I was struggling to comprehend my diagnosis.

My bewilderment grew as I tried to understand how the thyroid hormones, T3 and T4, worked together with thyroglobulin (a biomarker), and the pituitary gland located in the brain. I understood what hypothyroidism vs. hyperthyroidism meant, but only because I knew the symptoms of each, and would be able to tell my doctor if I was experiencing any of them.

I was told by multiple doctors that I had the “good” type of cancer, and I felt hopeless and quite stupid for asking them to repeat what they had just said, or for asking them to explain a term or biological process in a different way.

Coincidentally, I had just started my fourth month of graduate school in a program focused on health communication—one of my first classes was writing for health communicators. That’s where I learned that, as of 2003, when the U.S. Department of Education measured health literacy of various populations across the country

  • Only 53% had intermediate health literacy, or “having the skills necessary to perform moderately challenging activities.”
  • 12% had proficient health literacy, or “skills necessary to perform more complex and challenging literacy activities.”
  • Which means that more than 40% of the population is only able to understand the basics of their health.

It only gets worse for people living in poverty, the elderly, and racial minorities.

So how can we create health literacy equality among all populations?

The answer lies with patient advocacy and patient empowerment.

The doctor-patient relationship has changed significantly—for the better. Where once a patient relied on their doctor for information, to learn about a condition or a symptom, today, patients are finding this information online—and bringing their knowledge to appointments. They’re asking questions about their health and treatment paths. Some are even looking for answers about things that the doctor may not have heard of…yet!  

As a health care professional, are you:

  • Using terms that are patient-friendly or that are at grade level?
  • Using pictures or diagrams to simplify complex concepts?
  • Asking questions to make sure patients understand your instructions?
  • Explaining test results, documents, brochures, etc.?

Most importantly, are you taking the time to listen to the patient’s concerns, and addressing them in a clear, understandable manner?

When doctors and health care providers take time to engage with them, patients feel more empowered to take charge of their health, and to become their own advocates. When the fearful become fearless is when real change happens.

Deceived But Not Defeated

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I never felt any symptoms. I mean, I was tired, but what young 20-something who had just started graduate school while maintaining a full time job wouldn’t be? It happened during a physical. A lump towards the top of my throat was felt by my doctor. “I would go and have that scanned,” he said. I wasn’t worried; he had never mentioned cancer. So I went and had the ultrasound. “Well, we see what your doctor was talking about, and it appears to just be a cyst,” the doctor said, “but there’s another spot on the right side of your thyroid. You have two options. You can wait to see if the spot grows or we can perform a biopsy to see if it’s cancer,” he explained. “Now, the chance of it being cancer is anywhere between 10-15%, a very very low chance,” he reassured me. “I want the biopsy,” I said, not wanting to take any chances. The biopsy was performed, and within minutes, the doctor returned saying he had bad news. “Unfortunately, it’s cancer, but the good news is that it’s very treatable. I recommend you having surgery.” And that was it; although, it hadn’t hit me, at least not as hard as I thought it should had – at least not immediately. I went to my car, called my mom, and asked her if she was sitting down. I told her the news, still shocked by the ordeal I was just handed. In an instant, my life had changed forever. I heard those three words no one ever wants to hear, “You have cancer.”

I wasn’t sure how to proceed. How advanced is my cancer? What doctor(s) do I go to? How quickly do I need surgery? I just started school – do I need to drop-out already? What about my job. All of these thoughts raced through my mind. However, the support of my family and, luckily, not having any symptoms kept me going. I was working in a hospital at the time, and I spoke with a few of the doctors I worked with. “Oh, the good type of cancer. You’ll be just fine,” one said. “‘Good type?’” I thought. What is good about having cancer? He gave me the name of a surgeon who specialized in thyroidectomies. It was a five month wait to get in.

When I eventually saw my surgeon, he gave me two options. The first, he explained, was a partial thyroidectomy. “We’ll only remove the lobe of the thyroid where your tumor is. The benefit of that is that the other lobe will continue producing enough of the hormones that your body needs so you don’t have to take a medication for the rest of your life. The second was a total thyroidectomy, rendering me to that medication, literally, for a lifetime. I went with the former, and had a successful surgery. Of course, it didn’t end there.

Two days after my surgery, my doctor called. “We performed pathology on some of the lymph nodes that we removed from your neck, and unfortunately, almost all of them had cancer. What this means is that we need to have you come back and perform another surgery to remove the rest of your thyroid. Then after, you’ll have to undergo radioactive iodine to rid your body of any residual thyroid tissue.” My heart sunk. My world was crushed yet again. Another surgery? What was radioactive iodine? I didn’t how to process the emotions that I was feeling as tears streamed down my face. “It never ends,” I thought.

After my second surgery, I was thyroid-free. Later, I went through the radioactive iodine procedure where I had to be a specific diet for approximately 3 weeks. I could consume very little to no iodine, or salt, which was essentially in every product. As I went up and down the grocery store aisles reading every nutrition label, I found myself frustrated finding almost nothing that I could eat. Don’t get me wrong, this was a very healthy diet, as I was essentially restricted to meats (without seasonings), fruits, and vegetables. But it wasn’t my favorite. I went to a nuclear medicine center where I consumed a pill that would make me radioactive. I was to stay physically away from people for approximately one week, slowly decreasing the amount of feet I could be within others as each day passed. I then had a whole body scan that showed that the cancer hadn’t spread, or metastasized, to any other place in my body, but there was still some residual thyroid tissue that the radioactivity would hopefully kill.

The journey continued. I would need to be on a medication for the rest of my life. I would need to see a specialist, an endocrinologist, for the rest of my life. They would decide the dosage of my medication based on a variety of factors, including how I was feeling emotionally and physically. It wasn’t until after I had my thyroid removed that I realized how much it does for our bodies. “It will take some time before we find the right dosage for you,” my endocrinologist explained. In other words, sometimes I would be hyperthyroid, other times, hypothyroid. My symptoms may be all over the place, including my metabolism rate, my body temperature, and even my mood. As a patient with chronic depression and anxiety, I could only hope that the “right” dosage would be found quickly.

Fast forward two years later from my diagnosis, and I have been deemed “cancer free,” no more thyroid tissue. While I am incredibly thankful for this result, I can’t help but feel survivor’s guilt. I often think, “Why me? Why did I get to survive and others don’t? How did I get by so easily?” Despite this guilt, I have used my cancer diagnosis and journey to become stronger both mentally and emotionally. I have unashamedly shared images on social media and written stories that have been published in the hopes to inspire others and to be an advocate for those who don’t feel like they have a voice. Yet, I don’t pretend to know everything. I still have questions that remain unanswered. How likely is my cancer to come back? Why do I keep losing so much hair? Why am I always so tired? Despite having the “good” type of cancer, there is nothing that great about it. Although I never had symptoms, I still went through two surgeries and a radioactive iodine procedure, which had its own side effects.

As a result of what I went through and my never-ending passion for helping others, I believe that my diagnosis happened for a reason – to lead me to a career in patient advocacy. I have a background in health administration, policy, and communication. I have worked at doctor’s offices and hospitals. I feel I had an advantage in having the knowledge that I did/do, and access to physicians. However, I still get confused when I ask my doctor a question, and I receive an answer that’s in medical jargon. I think, “I can’t be the only one who feels lost, who feels confused.” Plus, I know that there are patients who are going through worse situations than I did. There has to be a way to mend the physician-patient relationship that is currently suffering. There’s not enough time dedicated to each patient, to hear what they’re going through each day. Physicians also need to make sure that what they’re saying/explaining makes sense to the patient, especially when it comes to taking medication(s) (patients with chronic conditions usually have multiple, which can be hard to keep track). There are solutions coming to the forefront, such as pill packs, patient portals, and support groups. But I believe this is just the beginning. Every cancer is different. No two patients are the same – indifference is ignorance. It’s time to combine research, health literacy, and ultimately, compassion for a patient’s story, to provide the best care and create better health outcomes.