January 15, 2002

SOURCE:American Association of Clinical Endocrinologists

NEW YORK, NY-- Jan 15, 2002 -- Most Americans are aware that heart disease and cancer patients may be genetically predisposed to these conditions, but according to a national survey released today by the American Association of Clinical Endocrinologists (AACE), more than three-fourths (76%) of the population do not know that thyroid disease runs in families(1).

To counteract this lack of awareness, and encourage Americans to uncover their family health history to discover their at-risk medical conditions, AACE is launching a new campaign, "The Neck's Generation: Thyroid Genealogy," to educate the public about the genetic links associated with thyroid disease. Research shows that there is a strong genetic link between thyroid disease and other autoimmune diseases including certain types of diabetes, anemia and arthritis (2). In fact, thyroid disease affects more than 13 million Americans, yet more than half remain undiagnosed.(3)

"AACE's call to action this year is for each American to educate themselves about their family health history and how it can affect their chances of developing a thyroid disorder. If thyroid disease or other autoimmune diseases run in their family, a conversation with their doctor and a simple blood test can rule out their risk for thyroid problems," says Rhoda Cobin, M.D., F.A.C.E., and president of AACE.

Health issues have increasingly become a family concern. According to the Council on Family Health, consumers are playing an increasingly active role in managing their health and treating their ailments(4). Because autoimmune disorders are hereditary, and some disorders run strongly in families, AACE encourages Americans to keep an open health dialogue between family members, including education on the risks of undiagnosed thyroid disease.

"Communication was the key that allowed both myself and my daughter to get early diagnoses of thyroid disease," said Wanda Rockwell of Waldwick, NJ, a patient with hypothyroidism. "If my mother, who also has an underactive thyroid, and I hadn't discussed her diagnosis as soon as she went on medication, I would not have known the symptoms to look for -- nor would I have realized my daughter was also at risk."

The thyroid is a butterfly-shaped gland located in the neck, just below the Adam's apple and above the collarbone. Left untreated, thyroid disease causes serious long-term complications such as elevated cholesterol levels and subsequent heart disease, infertility, muscle weakness and osteoporosis.

"Fifty percent of thyroid disease patients' offspring will inherit the thyroid disease gene. Since the thyroid gland is critical to every cell, tissue and organ in the body, it is very important for Americans to get tested for thyroid disease -- especially if they are experiencing some of the most common symptoms like fatigue, forgetfulness, depression and changes in weight and appetite," says Hossein Gharib, M.D., F.A.C.E, president-elect of AACE and Professor of Medicine at the Mayo Medical School.

According to the AACE survey, more than half (56%) of the American population has never been tested for thyroid disease(5). The millions who remain undiagnosed reflect the widespread lack of awareness of this serious condition that is easily treatable by taking a levothyroxine sodium pill once a day to restore thyroid hormone to its normal level.

The Diabetes-Thyroid Connection

AACE's survey found that 79 percent of Americans did not know there is a connection between diabetes and thyroid disease(6). In fact, fifteen to 20 percent of diabetics and their siblings or parents are at a greater risk of presenting with thyroid disease compared to 4.5 percent of the general population(7).

Patients with thyroid disease and their relatives are also at an increased risk of the type of diabetes that develops in children or young adults called type one diabetes(8). These two disorders rarely occur in the same person, but frequently can occur among family members. For example, it would not be uncommon to have a grandmother who suffers from diabetes and a grandchild that develops thyroid disease because both of these diseases fall into the autoimmune disorder category.

The Arthritis-Thyroid Connection

Since 90 percent of AACE survey respondents did not know that people with arthritis may be at increased risk for thyroid disease(9), it is not surprising that patients who suffer from certain types of joint and tendon inflammation rarely make the thyroid link. Painful tendonitis and bursitis of the shoulder was reported in 6.7 percent of thyroid disease patients, but occurs in only about 1.7 percent of the general population(10). In some cases, the pain and stiffness improves in thyroid patients when their thyroid condition is diagnosed and stabilized on medication.

There is also a higher prevalence of thyroid disease among patients suffering from rheumatoid arthritis than in the general population. In a group of 383 patients with documented rheumatoid arthritis, 9.3 percent had thyroid antibodies(11). Rheumatoid arthritis occurs when there is inflammation of many joints of the body, typically the knuckles, wrists and elbows. This type of arthritis also can improve when a patient's thyroid condition is treated.

The Anemia-Thyroid Connection

According to the AACE survey, only 15 percent of Americans are aware of the link between anemia and thyroid disease, but research shows that thyroid antibodies are frequently found in patients with pernicious anemia and their relatives. Pernicious anemia is a Vitamin B12 deficiency that usually develops in patients over the age of 60. This is an age group also at strong risk for thyroid disease. In fact, one in five women over the age of 65 have an increased thyroid stimulating hormone (TSH) blood level, indicating a failing thyroid gland.

In a large series of American patients with pernicious anemia, nearly half (48.3%) had laboratory test evidence of thyroid disease(12). The overall prevalence of pernicious anemia among children, siblings, parents, and parents' siblings of patients with pernicious anemia is about 2.5 percent, or about 20 times the prevalence in the population at large(13). This figure becomes even greater if age and closeness of the family relationship are considered.

Additional AACE Survey Findings(14)

• A majority of survey respondents correctly identified multiple sclerosis (75%) and epilepsy (73%) as non-genetic disorders; however, only 24% correctly identified thyroid disease as having genetic links.
• Most survey respondents correctly identified weight gain or loss (70%) and fatigue (62%) as symptoms of a possible underlying thyroid condition. Fewer people knew that changes in hair, skin and nails (40%), depression (37%) and intolerance to heat and/or cold (34%) are also symptoms associated with thyroid disorder.
• Forty-seven percent of Americans know that thyroid disease affects primarily women. In fact, women are five to eight times more likely than men to have thyroid disease.
• Much of the public is not aware of other complications that can stem from thyroid disease. Only 28 percent of survey takers knew of the link between elevated cholesterol and thyroid disease. Twenty-four percent knew that thyroid disease puts patients at increased risk for infertility, while 22 percent understood the link between osteoporosis and thyroid conditions.

The American Association of Clinical Endocrinologists and the Neck Check(TM):

While the TSH blood test is the most sensitive and accurate diagnostic tool for thyroid disease, AACE also recommends that patients perform a simple self-examination called the Neck Check(TM). This easy, quick self-exam, unveiled by AACE in 1997, helps Americans detect if they have an enlarged thyroid gland and should speak with their doctor about further testing. For step-by-step instructions on how to perform the Neck Check(TM) visit the AACE web site at www.aace.com. As part of The Neck's Generation campaign, AACE's web site also provides tools such as a "family tree" chart to track your family's health history and testing reminder e-postcards to help the general public educate themselves and others about the genetic link in thyroid disease.

The American Association of Clinical Endocrinologists (AACE) was established in 1991 and is the country's largest professional organization of clinical endocrinologists. Its membership consists of more than 3,500 clinical endocrinologists devoted to providing care for patients with endocrine disorders. The association strives to improve the public's understanding and awareness of endocrine diseases and the added value of the clinical endocrinologist in the diagnosis and treatment of these diseases.

Thyroid Awareness Month is supported through an unrestricted grant from Abbott Laboratories.

1.ORC International Omnitel Survey, December 2001

2 Dayan CM, Daniels GH Chronic Autoimmune Thyroiditis, NEJM 335: 2 99-107, 1996

3 www.aace.com

4 Hayes, Jr. M.D., Arthur Hull "Did You Know...Focus: Preventing Drug Interactions," Council on Family Health, www.cfhinfo.org/educationResources/did_you.htm 12/11/01

5 ORC International Omnitel Survey, December 2001

6 ORC International Omnitel Survey, December 2001

7 Adams A Walston J Silver K Autoimmune Disease Risk in Families with Type 1 Diabetes, www.genetichealth.com 10/27/01

8 Wood M.D., Lawrenece C Your Thyroid: A Home Reference, Ballantine Books, New York, 1995

9 ORC International Omnitel Survey, December 2001

10 Wood M.D., Lawrence C Your Thyroid: A Home Reference Ballantine Books, New York, 1995

11 Wood M.D., Lawrence C Your Thyroid: A Home Reference Ballantine Books, New York, 1995

12 Carmel R, Spencer CA. Clinical and subclinical thyroid disorders associated with pernicious anemia. Arch Inter Med 1982: 142: 1465.

13 Lee: Wintrobe's Clinical Hematology, 10th ed., Lippincott Williams & Wilkins, 1999

14 ORC International Omnitel Survey, December 2001