Thyroid Dysfunction

Battling Thyroid Cancer “DEE”

By Greg Willis

Talk about driven. Dee is the very definition of the word. She’s a hard-working, intelligent woman, thriving in the hustle and bustle of downtown Manhattan. Dee works as a consultant in corporate communications, and hasn’t slowed down much in the last ten years - despite battling thyroid cancer.

Ten years ago, she was an undergraduate about to attend Columbia University in New York. Before beginning the fall semester, she scheduled an appointment with the family doctor for an annual physical. Despite feeling fine, the doctor noticed something odd: A lump in her throat.

“The lump was quite insignificant,” Dee said. “In fact, it could only really be seen from the side. It came as a surprise that this could potentially be something worth worrying about.”

After she discovered the lump, Dee underwent surgery to have the “cyst” removed. During surgery, cancer was discovered.

“Looking back on it now, I should’ve requested a biopsy immediately after they noticed the lump in my throat,” she said. “But I was 24, and being a potential candidate for cancer never even crossed my mind for a second. It was surprising.”

Dee then underwent a complete thyroidectomy to remove all of the cancerous areas around her thyroid one month later. Her thyroidectomy was performed at Brigham and Women’s Hospital in Boston.

Since the diagnosis 10 years ago, she has undergone six additional surgeries related to the thyroid cancer. During that time, she continued her studies at Columbia University and then went on to get her Masters at the London School of Economics and Political Science. “It certainly made for hectic semesters,” Dee joked.

“My family was very supportive of my choices during that time,” she said. “They encouraged me to do whatever I wanted, but to make certain that I was receiving good care.”

And essentially that’s what she has continued to do. Her endocrinologist of 10 years, Dr. Jeffrey Garber of Harvard Vanguard Medical Associates, reports that although the cancer is not completely cured, she’s in great health and continues to live a normal and active lifestyle.

“I’ve been insistent that this won’t stop me,” Dee said. “And I haven’t let it.”

"Looking back on it now, I should've ordered a biopsy immediately after they noticed the lump in my throat," she said. "But I was 24, and being a potential candidate for cancer never even crossed my mind for a second. it was suprising."

A knot in the Neck Kelly Forman

By Greg Willis

Kelly Forman is no stranger to adversity-- she cared for her mother as she lost a hard-fought battle to breast cancer in 2002. A year later, Forman was diagnosed with thyroid cancer.

It began after she saw a protrusion in her neck, mostly by coincidence. She noticed that when she wore jewelry around her neck, it rested differently than it used to. Concerned, she met with her physician to get some answers.

“At the time, I suspected it was lymphoma,” Forman said. “Although my doctor wasn’t convinced.”

So testing began. Her doctor ordered a blood test, which didn’t reveal anything out of the ordinary, ruling out lymphoma or a thyroid condition.

A couple of years passed and Forman forgot about her own troubles. She helped care for her mother, relocating from Florida to the mountains of North Carolina. She paid little attention to the knot in her neck.

During that time, the lump was still noticeable. But Forman “didn’t think it was anything too serious, and kind of just forgot about it.”

While meeting with her doctor in Boone, North Carolina, he noticed the lump and began to ask questions. “I told him that blood work was done, and everyone came to the consensus that the nodule was benign,” Forman said.

“No, this is a problem,” her doctor replied and ordered a biopsy.

On Christmas Eve in 2003, Forman received the official diagnosis -- she suffered from an aggressive case of papillary thyroid cancer.

“There weren’t words to describe how I felt at that moment,” Forman said. “It put a damper on the holidays that year, that’s for sure.”

Having lost her mother to cancer, Forman wasn’t taking any chances with her own health. “I commuted from North Carolina to New York City to get the best possible treatment I could find.”

After consulting with AACE endocrinologist Donald A. Bergman, MD, FACE, treatment began shortly thereafter. Since then, her battle with cancer has followed a more unconventional path than many thyroid cancer patients.

“I suffered three reoccurrences after the initial diagnosis,” Forman said. “Quite honestly, it was difficult at times.”

But she was determined not to let it get her down. For her, getting healthy again became “the central priority of my life.”

These days, Forman feels much better. Her cancer is currently in remission, and she maintains periodic appointments with Dr. Bergman.

She’s also quick to advise her friends that a “lump in the throat” may be much more than a “fashion faux pas” and may warrant attention from their physician.

“It’s such a subtle, little thing that can easily go unnoticed,” Forman said. “But if you suspect something may be wrong, get it checked.”

Patient Stories

Wiped Out Paloma Nunziata

By Sarah Senn

Living in New York City can be chaotic for anyone, but the constant motion of the city can be especially overwhelming for someone suffering from a thyroid dysfunction. Paloma Nunziata knows this first-hand.

Nunziata is a social worker living in Manhattan who was recently diagnosed with a thyroid disorder. Before her diagnosis, Nunziata was like many other New Yorkers. She commuted from her home in Manhattan to her job in the city. As a social worker, Nunziata visited clients’ houses across the city.

Work isn’t the only thing that keeps Nunziata busy. She enjoys snowboarding in upstate New York and traveling to exotic locations to surf. In May 2008, Nunziata traveled to Costa Rica to go surfing. The excursion was great, but Nunziata felt different than usual when she returned. Weeks after the trip, she was still tired and her bones and joints were abnormally achy.

“I was really sore, and I never stopped being sore,” Nunziata said.

At the beginning of September, thinking she had mononucleosis, Nunziata made an appointment to see her regular physician. After a series of blood tests, this doctor referred her to an endocrinologist. Nunziata was diagnosed with Graves’ disease, an autoimmune disease that is caused by an overactive thyroid and is more common among women. Graves’ disease causes the thyroid to produce an excessive amount of thyroid hormone, and it frequently results in hyperthyroidism. This disease is treatable, but its effects often disrupt daily routines.

“I was worried about not being able to be active and the treatments were daunting,” Nunziata said.

There are three common treatment options for hyperthyroid disorders - anti-thyroid medications, radioiodine therapy and surgery. Anti-thyroid drugs slow thyroid hormone production and are taken daily. Radioiodine therapy uses radioactive iodine to destroy the diseased thyroid gland and create a hypothyroid condition that can be more easily controlled with thyroid hormone replacement therapy.

Nunziata evaluated her options with her endocrinologist and decided to start anti-thyroid drug treatment. She began taking propylthiouracil (PTU) at the end of September. Nunziata has reacted very well to the anti-thyroid drugs.

“I was supposed to be on the medications for a year, but I’m already responding so well. It’s very surprising,” said Nunziata, “I feel 90 percent back to normal.”

Even though Nunziata has made a few adjustments to accommodate the effects of the disease, it hasn’t changed her outlook on life. She left her job that she commuted to across the city and found a position closer to home. This new job also allows her to be more sedentary, but still work as a therapist in the same capacity. With her disease under control, Nunziata can’t wait to travel back to Costa Rica, and she’s looking forward to seeing snow.

By Bryan Campbell

It was a relatively warm August morning when I first met supermodel Kim Alexis. I was with a production crew arriving at Kim’s house to tape a public service announcement to help raise awareness of thyroid disease. It didn’t take me long to realize that Kim Alexis isn’t just a supermodel, she is also a supermom.

As it turned out, we were arriving at Kim’s house on the day that she was packing up her house for a move. There was a moving truck in the driveway and boxes as far as the eye could see. But Kim maneuvered all of this gracefully, taking time to work with our crew on lighting, locations, and everything, while also packing boxes, managing a house full of strangers, and taking care of her teenage son.

Kim did all of this with an almost endless supply of energy; bouncing from one activity to the next without pause, keeping the rest of us on our toes. But there’s a reason for Kim’s high energy level; she doesn’t take it for granted. That’s because just a few years ago, she was losing her energy completely.

The fashion world of a supermodel is non-stop. So is the life of a mother. So when Kim noticed that she was running out of energy for no apparent reason, she grew concerned. That’s when she saw an endocrinologist and discovered that she had a thyroid problem. Specifically, she had a condition called Hashimoto’s thyroiditis, a condition that left her body with too little thyroid hormone.

Kim began taking medication to balance her thyroid levels, and today she says she feels ten years younger. You can hear Kim’s own personal message at our website, www.EmPowerYourHealth.org. Kim’s story is a common one. More than 25 million Americans have some form of thyroid malfunction. The most common condition is an underactive thyroid. However, signs and symptoms of an underactive thyroid can sometimes be overlooked. Unexplained fatigue, forgetfulness, weight gain, and dry, itchy skin can all be features of hypothyroidism.

Of those 25 million people with thyroid disease, more than half remain undiagnosed. That means more than 12 million people may be experiencing symptoms like Kim, and don’t know what is causing them.

For many thyroid patients, the solution can be as simple as a thyroid hormone replacement pill. That was the case with Kim. Within a few months of beginning her treatment, she felt better and noticed the fatigue and other symptoms she had been experiencing had gone away.

There is no permanent cure for thyroid disease. In fact, once you are on the proper medication, you’ll want to see your physician or endocrinologist regularly to make sure you are keeping your levels in check. Often, as the body changes, different dosages of thyroid hormone will be needed to ensure proper levels in your body.

An endocrinologist is a thyroid specialist. If you need to find an endocrinologist in your area, log on to www.EmPowerYourHealth.org, and click "Find an Endocrinologist” located under the Resources section. You can search by location and specialty to find the doctor that is right for you.

A Dentist Appointment I’ll Never Forget: A Patient Story

By Karen A. Avitabile

My dentist saved my life. Yes, my dentist.

During a routine six-month cleaning, my dentist checked my neck and under my tongue. This was not foreign to me. He explained years earlier cancers of the throat, tongue and jaw were on the rise, and it is his job to make sure everything is normal with each patient.

While feeling my neck, he noticed a lump on the right side. “It may be a swollen gland, but if it doesn’t go away in a few weeks visit your medical doctor,” he said.

Nearing age 40, I led a busy life. In addition to my full-time job as a travel editor with AAA, I had just returned to college to pursue a second degree and volunteered in my community. I exercised regularly and watched my diet.

I never had a swollen gland, but I didn’t think it was something that was going to slow me down – I couldn’t see the lump, it didn’t bother me and I felt perfectly fine.

A week later, I visited my gynecologist for my annual exam. I told him what the dentist said and asked him to check my neck for a swollen gland.

“Swollen gland?” he said. “That’s your thyroid and you should see your regular doctor.”

OK, maybe there was something wrong with my thyroid, I thought. So if I have to take medication, it wasn’t the end of the world.

I went to my general practitioner the next day. He scheduled blood work and an ultrasound to “see what’s going on.”
Results of the blood work didn’t show any problems with my thyroid but the ultrasound showed a three-centimeter lump leaning on the right side of my thyroid. I was referred to a surgeon to discuss options.

“You’ve got this large lump which will never go away,” the surgeon said. “In fact, it will probably get bigger. We can biopsy it to ensure it is not cancer, or just keep an eye on it. It’s your call.”

“Is a biopsy going to tell us 100 percent if I have cancer?” I asked.

“Nope. Ninety-five percent,” he said.

That 5 percent gray area was all I needed to hear to make my decision -- I wanted to have the lump removed. This also meant removing the right side of the thyroid. In my mind, there was no way around it. I wasn’t willing to take a chance with my life.

Prior to the surgery, my father was diagnosed with Lou Gehrig’s Disease, a progressive neurodegenerative disease which causes patients to become paralyzed and leads to death. He was one in 50,000 people annually diagnosed with this debilitating disease.

I remember thinking those were crazy odds and certainly didn’t think I would be one of the over 35,000 people diagnosed with thyroid cancer each year.

Some family and friends thought I was crazy for going through with the surgery. “Why don’t you just get it biopsied each year? Why would you want to remove most of a vital organ if you don’t have to?” some asked.

The answer was simple – because I refused to gamble my life away.
The morning of the surgery, the doctor explained that it would take about 90 minutes to remove the right lobe of my thyroid. He added that they would be testing the right lobe for cancer. He asked if he could remove the whole thyroid if that was the case. I granted my permission.

The clock on the wall was the first thing I saw in the recovery room when I woke up. I quickly did the math. More than three hours had passed. I knew this was a bad sign.

My fears were confirmed when my doctor entered the room.

“You had cancer,” he said. “We had to remove your entire thyroid.”

When I arrived in my hospital room, I tried to compose myself before facing my family. “In a few minutes,” I repeated to a nurse who kept coming in to tell me my family was waiting to see me.

Like me, my family knew something was wrong based on the length of time the surgery took. My doctor gave them the news before they came in to see me.

No one, especially me, could believe this had happened to me.

The next morning, the nurse came in to give me my first dose of levothyroxine – a thyroid replacement medication that I would have to take daily for the rest of my life.

I was not looking forward to what lie ahead, who would? In addition to my daily medication, I would have to undergo radioactive iodine therapy, ultrasounds and ongoing monitoring.

After a few days, the lab tests confirmed I had papillary thyroid cancer, one of the more common types, and I was expected to make a full recovery.
Within two months, I underwent radioactive iodine treatment – to ensure any remaining thyroid cells in my body would be destroyed – and another ultrasound. All tests came back negative for additional cancer.

Four years later, I remain cancer-free. I see my endocrinologist every three months, have an annual ultrasound examination and ingest a small amount of radioactive iodine each year as a precaution. My endocrinologist monitors my TSH (thyroid stimulating hormone) levels. If they are either too high or too low, he may choose to increase or decrease my dose of levothyroxine. He also organizes my ultrasounds and radioactive iodine treatments.

Other than that, I’m back to living the life I’m used to. I graduated from college for the second time in May 2009, still volunteer in the community, exercise and continue to travel the globe as part of my work at AAA. Of course, my levothyroxine is the first thing I pack now.

When you first hear the word “cancer,” the natural response is fear. As I have come to learn firsthand, however, thyroid cancer is very treatable and manageable.

I may be one in 25,000 people to be diagnosed with thyroid cancer, but I still consider myself lucky in many regards.

And I thank my dentist every time I see him.

Editor's note
We were delighted to receive Ms. Avitabile’s unsolicited contribution to our magazine. Previously, endocrinologists belonging to AACE submitted all magazine pieces featuring patients.

Ms. A’s decision to undergo surgery regardless of the result of a biopsy based on her wishes to eliminate uncertainty is a well-accepted basis for having surgery. Although a fine needle aspiration may be inconclusive, it is standard practice to do one before surgery. In some cases, in addition to establishing whether or not to remove both sides of the thyroid, it could lead to further preoperative evaluation in order to determine whether even more extensive surgery such as lymph node removal will be required (see sections on thyroid cancer). While her family and friends advised her to “get it biopsied each year”, yearly biopsies are not necessary when a nodule appears to be benign and is not growing. Lastly, although yearly ultrasounds are routinely done for several years after papillary thyroid cancer is diagnosed, most cases do not require yearly radioactive iodine imaging.

Hypothyroidism in Women

By Dr. Daniel Einhorn

Could it be my thyroid? This is one of the most commonly asked questions by women, especially to a clinical endocrinologist like me. The “it” usually refers to weight gain, fatigue, mood disturbance, sleep disturbance, hot or cold intolerance, and any one of dozens of similar concerns. Since the answer has to include that “it might be,” many thyroid tests are done even when the likelihood of thyroid disease is small. Since puberty, pregnancy, and menopause may cause identical symptoms to thyroid disease, those are the most common times women present with these symptoms. When thyroid disease does turn out to be the diagnosis, everybody is happy because the treatment is very satisfying, safe, and inexpensive.

Most thyroid disease is autoimmune in nature, so it is not surprising that women have it 8 to 12 times more commonly than men. Most common of all is under active, or hypothyroidism, which affects between 12-30 million Americans, depending on how you define it. Symptoms include all those listed above, plus physical signs such as dry skin, hair, and nails, puffiness of hands and face, and, often, diffuse enlargement of the thyroid gland. Diagnosis must be made by lab test, however, since there are no diagnostic clinical features.

Elevation of thyroid stimulating hormone (TSH) is the diagnostic hallmark of hypothyroidism. Controversy exists over what level of TSH should be considered high. Traditionally, the range of normal has been .350 to 5.500. However, some endocrinologists believe that any TSH above 3, in the presence of suggestive symptoms and signs or evidence of autoimmunity, should be considered possibly hypothyroid. Levels above 10 should be treated even in the absence of symptoms or signs because hypothyroidism can adversely impact blood pressure, cholesterol, and other cardiovascular risk factors. The elderly have higher TSHs and pregnant women have lower TSHs, often below 1 in the first trimester and below 2.5 throughout the pregnancy.

There is some value to knowing whether you have the most common form of hypothyroidism, Hashimoto’s Disease, since that is highly inheritable, especially among the females in the family. Named after Dr. Hakaru Hashimoto, it is diagnosed by the presence of antibodies to components of the thyroid, anti-TPO and anti-microsomal antibodies. Often these make the gland hard rubbery and enlarged, sometimes with nodularity that can be mistaken for malignancy. This, like virtually all forms of hypothyroidism, is permanent. An exception is post-partum hypothyroidism, which can be temporary.

As with postmenopausal hormone replacement therapy, there is a lot of art, as well as science, to thyroid replacement therapy. Generally L-thyroxine or T4 (brand names Synthroid Levoxyl or Levothroid) is recommended at the lowest dose where the woman feels optimal and has a normal TSH, generally in the 1-2 range. Generics are very inexpensive and are fine for the majority of women. The brand may be worthwhile in especially sensitive women for whom variability in the bioavailability of generics is an issue. Always important is remembering to take the L-thyroxine first thing in the morning on an empty stomach and to wait at least a half hour before putting anything else in the stomach, including vitamins, iron, calcium, food, etc., since so many things can interfere with the absorption of thyroid.

“Most thyroid disease is autoimmune in nature, so it is not surprising that women have it 8 to 12 times more commonly than men. Most common of all is under active, or hypothyroidism, which affects between 12-30 million Americans, depending on how you define it.”

Not recommended are forms of thyroid replacement that contain T3, such as dessicated thyroid (e.g., Armour) or are pure T3 (Cytomel). This bypasses the body’s highly regulated T4 to T3 conversion, wherein just so much of T4 is converted depending on the body’s needs at the time. Complications of over-replacement are more likely with T3, including cardiac dysrhythmias, anxiety, bone loss, etc. As with most everything in medicine, there are exceptions, and some women have unequivocal benefit from T3.

Titrating the dose of thyroid is an art. There is a difference between being somewhere on the normal range and being at the optimal point on that range. I often give women at least a few different doses to try for several weeks each to see if they can tell which feels “right.” It is remarkable how much difference a small adjustment of thyroid hormone can make.

Three special circumstances are worth noting. In pre-pregnant and pregnant women, only T4 should be used because the fetus cannot use T3 and is dependent on T4 to T3 conversion for normal growth and development during the first critical 12-14 weeks of pregnancy. During pregnancy, thyroid requirements may go up dramatically, and so thyroid levels should be followed closely in each trimester. In some patient populations such as the elderly and those with heart or bone problems, high-normal TSH levels in the mid to upper range of normal may be advisable.

Thyroid levels should be rechecked and the history and exam be reviewed at least annually since everyone changes over time. More frequent evaluations are reasonable during times of more rapid change, such as in menopause.

In the end, it should be clear for each woman that she is at her optimal level for thyroid hormone replacement. If related symptoms exist, they can be addressed by other, non-thyroid, means, and the thyroid part of the equation can be put to rest.

Daniel Einhorn, MD, FACP, FACE, is President Elect of the American Association of Clinical Endocrinologists (AACE). He was the 2005 recipient of the Yank D. Coble, Jr., MD, Distinguished Service Award from the American College of Endocrinology (ACE). In 2006, he was elected Secretary of AACE. Dr. Einhorn was Co-Chair of the ACE Task Force and the Consensus Conference on the Insulin Resistance Syndrome. He is past Chair of the Clinical Research Committee, Membership Committee, and the AACE 3000 Campaign and has served six years on the Board of Directors of AACE. He is on the Board and Executive Committee of the California Chapter of AACE and has participated in regional AACE programs. He has presented at national AACE meetings for the past 10 years on subjects ranging from the evolving role of the clinical endocrinologist to clinical strategies, devices, and novel compounds. He has chaired and served on many AACE committees, including Strategic Planning, Nominating, and International.

He received his BA from Yale (Summa Cum Laude) and his MD from Tufts (Alpha Omega Alpha) before going on to training at the Beth Israel Hospital, Harvard Medical School. He did a residency in internal medicine, a year of psychiatry, and his Fellowship in endocrinology before going on to be an Instructor of Medicine at Harvar

Back on Track

3 Time Olympic Gold Medalist Gail Devers' Story

By Bryan Campbell

Blink and you just might miss the fastest woman in the world. But you’ll never forget her champion’s smile, and her signature fingernails.

Gail Devers became a household name during the Barcelona Olympics of 1992. The young American sprinter raced into our hearts with one of the greatest finishes in Olympic history—a photo finish in the 100-meter sprint finals. Five women finished within 0.06 seconds of each other. Gail won the gold medal and the title “Fastest Woman in the World.”

People around the world instantly recognized her for her huge smile and her even bigger fingernails.

But just two years before that race, it seemed like Gail’s racing days were over.

Gail Devers was a rising star in the track and field community. After a successful college career, she set her sights on the 1988 Seoul Olympics. But as she prepared for the games, she noticed that something wasn’t right with her body. She often felt run-down, like she had been “running in neutral” all day long.

She experienced other problems, too. She was losing weight fast.

“At first, I thought this was cute, but after a while, it went beyond being cute,” says Devers.

She competed in the 1988 Olympics but did not win a medal. After the games, her health continued to get worse. At one point, she thought about giving up racing altogether.

“I went to several doctors, and none of them could tell me what was wrong,” says Devers. “At some point it stopped being about competing, and it started being about getting my life back.”

Finally, after three years of unanswered questions, Gail got a simple test called a TSH. The test checks the function of the thyroid. As it turns out, she had a condition called Graves’ disease.

Graves’ disease is a form of overactive thyroid disease. It is an autoimmune disorder, which means that the body’s immune system is actually attacking the thyroid, prompting it to produce more thyroid hormone than is normal.

Thyroid hormone acts as a kind of regulator for metabolism. If your body doesn’t have enough thyroid hormone, you can feel sluggish and weak. In Gail’s case, with too much thyroid hormone in her system, her body was running on overdrive all the time.

She received radioiodine [RAY-dee-o-EYE-uh-dine] treatment, which slowed down her thyroid. Because her thyroid now cannot make enough thyroid hormone, she is on a daily thyroid hormone replacement regimen. She takes one pill every day to keep her thyroid levels in check. And she makes sure to see her endocrinologist [en-doh-kri-NAH-low-jist] every six months to make sure that her levels are good.

The treatment got Gail back in the race.

“It was like I got my life back,” says Devers. “I was back to battling my opponents, not my own body.”

And with careful monitoring from her doctor, she started training again. And less than two years later, she was standing on the podium, accepting her first gold medal.

Yes, first.

Four years later, at the Olympic Games in Atlanta, she took home not one, but two more gold medals, one for the 100 meter sprint, and one for the 4×100 meter relay. Again, Gail was a household name. Those fingernails became known around the world!

But just what was it that led the fastest woman in the world to grow those fingernails? The answer provides a key to understanding her personal struggle.

“I grow my fingernails for three years, because that’s how long I went undiagnosed,” says Devers. “Every three years I cut them and start growing them again.”

Gail’s signature fingernails are a message to people everywhere that they don’t have to live with a thyroid disorder. If you are feeling sluggish or run down, if you are experiencing weight gain or weight loss that you can’t explain, or if you are feeling any of the other symptoms of thyroid dysfunction, then you should think about getting your thyroid checked.

Today, Gail is running a new race. She’s no longer competing in track competitions. But she is still chasing young ladies around. Today, Gail is living in Atlanta, site of her 1996 Olympic victories, with her husband and two young daughters.

“I haven’t slowed down at all.”

And that’s the message that Gail still takes with her wherever she goes. She’s passionate about making sure people understand the signs and symptoms of thyroid disease, and that they understand proper treatment.

“I get my thyroid hormone levels checked every six months, and I make sure my levels are right,” says Devers. “I don’t plan on slowing down again for a long time.”

To hear more from Gail Devers about the importance of thyroid health, Click Here