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In the best health: what four individuals learned about visiting their doctor's, asking questions, and getting a second opinion

Keisha-Gaye Anderson

Managing your health involves more than just schedulings a yearly physical. It requires doing research, knowing your family, history and keeping up with new test a and screenings for your age and risk categories. It's also important to find a doctor with whom you feel comfortable discussing your questions and concerns. We feature bout individual of various ages who have learned the importance of being proactive about their health needs.

Camille Abrahams was no stranger to the doctor's office. Having been diagnosed with ITP (Immune Thrombocytopenic Purpura), a rare blood disease that hinders her blood's ability to clot, she knew how important it was to maintain her health and see her doctor regularly. So when she was diagnosed with osteoarthritis at 26, Abrahams was determined to get a second opinion. Her diligence paid off.

"I was a very active person and I just felt myself slowing down and I didn't know why," says Abrahams, who works for a New York-based nonprofit agency that provides technical assistance to HIV programs. Early this year, during her regular workouts at the gym, Abrahams noticed that her knuckles would swell and hurt. She also noticed other symptoms such as hair loss, chronic fatigue, skin rashes on her elbows, and sensitivity to sunlight. She sought advice from her hematologist, a specialist she had been visiting since her teens because of her blood condition. He referred her to a rheumatologist, who ran more blood tests. The result was lupus. Abrahams' white blood cell count was high and her A&A (anti-nuclear antibody) was positive. Over 90% of lupus patients have a positive A&A.

Dr. Dina Strachan, a New York-based dermatologist, says that black women should pay close attention to lupus symptoms. "Black women who suffer with lupus are much more likely to have problems or even die from [complications caused by the disorder]," she explain s. Early symptoms include scaly patches, scarring, and lesions.

Lupus is an autoimmune disease that affects various parts of the body, particularly the skin, kidneys, joints, and blood. Antibodies that usually attack foreign agents like bacteria start to attack healthy cells. The disease is approximately two to three times more prevalent in people of color and almost exclusively affects women. Abrahams was not aware that her blood condition could be considered a precursor for lupus. Since being diagnosed, she joined an online support group, Sisters with Lupus. Because stress can incite a flare-up of symptoms, Abrahams tries to keep stress to a minimum by practicing yoga. She also takes medication.

"[The] 20s is typically when people are feeling like they're healthy and invincible," says Dr. Andrea Pennington, founder of the Pennington Institute for Health and Wellness. However, young men and women should enforce good health habits as early as possible to maintain a high quality of life.

Kat Carney only visited a doctor when she absolutely had to. When back pain forced her to pay her doctor a visit seven years ago, what she learned forced her make lifestyle changes that completely transformed the way she lives today. Weighing in at 240 pounds, the former anchor for CNN Headline News was reluctant to admit there was a problem. But the doctor insisted that obesity was contributing to her back pain. "I told the nurse, 'there's something wrong with your scale,'" Carney jokes. The excess weight was not the only problem. Her inability to lose it was just one sign that something else was wrong.

Carney also noticed hair shedding from her head. Simultaneously, she was developing hirsutism, excessive growth of body hair. Her menstrual cycle was also irregular. Her doctor said that there was nothing seriously wrong, but Kat Carney was determined to understand the problem behind her ailments. After seeing several doctors, one finally suggested that she might have Poly-cystic Ovary Syndrome, a hormonal disorder that affects approximately 10% of women of childbearing age. In PCOS sufferers, the pituitary gland sends the wrong hormonal signals to the ovaries, which in turn, will not release eggs as they would during a normal menstrual cycle. The ovaries become enlarged and develop several fluid-filled cysts, which contain mature eggs.

"Carney did the right thing by seeking more than one medical opinion," says Pennington. "As African Americans, we have to be willing to tell all the symptoms we are experiencing. It could be a signal that something bigger is going on inside that could become a big deal later on."

Women with PCOS also have higher levels of insulin, which increases their risk of developing diabetes. "When your blood sugar is elevated, it damages the lining of the coronary arteries," says Dr. Jennifer Mieres, director of nuclear cardiology at North Shore University Hospital in Manhasset, New York, and spokesperson for the GE Healthcare Women's Heart Health campaign. These elevated insulin levels also result in excess testosterone production by the ovaries, which causes excessive facial hair growth that women with PCOS often experience. Other symptoms include male pattern baldness, thinning hair, acne, oily skin, and infertility. PCOS sufferers are also at greater risk for high cholesterol and high blood pressure.

Whether obesity is a cause or result of PCOS is not clear. What is known is that weight gain is one of the main symptoms. Carney had poor eating habits that compounded her difficulty with losing weight. "My eating habits were absolutely atrocious and I got zero extracurricular physical activity," she says.

There were, and still are, no FDA-approved drugs for the treatment of PCOS. As with many sufferers of PCOS, Carney was prescribed birth control pills to regulate her hormone levels, but they caused Carney to gain weight and suffer from excessive sweating. Carney decided to research her best medication options. She found a French study about a drug called Flutamide. In the United States, the drug had been approved to treat prostate cancer. But several doctors refused to prescribe it to her for PCOS. Eventually, she found a physician who consented but insisted on monthly liver checkups and swore her off alcohol. "It ended up being the perfect medication for me," says Carney.

"Whatever physician you're working with, it's a partnership," she continues. "The doctor--patient relationship should not be adversarial."

Carney also adopted an exercise regimen that resulted in her shedding 90 pounds in 14 months. She also changed her diet by reducing her intake of refined carbohydrates and eating more fresh vegetables. Carney is now a spokesperson for NutriSystem. She also started a Website to educate women about PCOS, www.soulcysters.com, and another support Website for those struggling to control their weight, www.fitatanysize.com.

What Ben Green didn't know almost killed him. His chronic headaches weren't just stress-related. They were crucial warning signs that would have prompted him to seek medical attention sooner if he had known how close he was to death.

Green, an electronic data interchange administrator for FOX Cable Networks Group, was concerned about developing asthma, which ran in his family. He wasn't as concerned about his eating habits. He loaded up weekly at his favorite fast-food restaurant. "It was a ritual," he says. "Fried chicken, fried fish, lots of hot sauce. I ate a lot of the wrong foods."

In 2000, a particularly stressful year for Green, he began to experience severe headaches. He put off going to the doctor because he didn't have health insurance and opted to take aspirin instead. His headaches, however, became unbearable. "I started going to sleep with headaches and waking up with headaches that wouldn't go away," Green explains. In January 2001, he finally visited a clinic for a checkup.

The triage nurse took his blood pressure twice, then quickly summoned the head nurse. Green knew something was wrong. "The head nurse took my pressure and she told me I had to be hospitalized." He was admitted that same day and was assigned a doctor who checked on him every 30 minutes to make sure he remained conscious. With a blood pressure of 220 over 190, Green could have had a stroke at any moment. A healthy blood pressure is usually at or below 140 over 90.

"In general, African Americans do not seek out medical care unless something goes wrong," says Pennington. If Green had known that he fit the profile of someone who suffers from high blood pressure--African American, mid-40s, and a sedentary lifestyle with a family history of high blood pressure--he might have paid attention to his headaches earlier. Unfortunately, Green did not learn his full family history until his hospitalization.

"Very often, African Americans can have undiagnosed hypertension," says Mieres. "Hypertension is a powerful risk factor for heart disease. The 40s is usually when heart disease starts manifesting in men." Mieres advises both men and women to have an Electrocardiogram (ECG or EKG), a test that measures the electrical activity of the heart, by age 40, in addition to a routine physical exam to screen for any signs of heart disease.

Green was put on Lotrel to keep his blood pressure down and Lipitor to control his cholesterol. He brought his weight down from 265 to 235 in three months by exercising regularly and removing salt and junk food from his diet. He limits salt intake and reads food labels for sodium and sugar content. "When I go out to eat, I check the salt limits. When I order french fries, I tell them no salt."

Green was fortunate, but many African Americans are at risk for hypertension and are unaware of how serious the condition can become and what other ailments it can trigger. "African Americans have a genetic predisposition to hypertension," says Mieres. Heart disease and stroke are the No.1 and 3 killers of African American men and women. She adds, "having an elevated blood pressure destroys the lining of the vessels that supply the heart and the vessels that supply the brain. The heart has to work much harder." Preventative measures literally can be the difference between life and death.

"In the military, they make you do a physical every year," says David Dunham, a retired non-commissioned Air Force officer, who always asked to be tested specifically for diabetes. Dunham has a family history with the disease, but through 23 military physicals, the tests were always negative. Dunham was also in good physical condition, working out regularly and staying active. "I used to go to the gym, play basketball, and play softball. I was always on the go," he says. After retirement, his pattern of physical activity changed. He became more sedentary and gained 25 pounds. He also began to notice other physical changes like a continual urge to urinate, extreme thirst, and very low energy. Dunham's doctor visit revealed that he had developed Type II diabetes.

When compared with other ethnic groups, "an African American person who gains weight and has a sedentary lifestyle is twice as likely to develop diabetes," says Mieres. Type II diabetes is particularly prevalent in the African American community and Dunham's profile fit into a cluster of risk factors.

Diabetes is also a huge risk factor for heart disease. Elevated blood glucose levels destroys the lining of the heart and promotes a build up of plaque in the arteries, which blocks blood flow.

At first, Dunham's doctor prescribed oral medication. He is now taking daily insulin shots. "It was very hard. The first couple of times, I couldn't bring myself to stick myself," he says. He is also taking a low dosage of pills to keep his cholesterol and blood pressure under control. Now Dunham stays active by doing yard work for cardiovascular exercise. He takes his medicine regularly and visits his doctor every six months.

Name: Camille Abrahams

Age: 26

Health concern: lupus

Symptoms: fatigue, skin rashes, arthritis in fingers, hair loss

Degree of involvement: Abrahams was diagnosed with a blood disorder at 16 called ITP (Immune Thrombocytopenic Purpura), which caused her platelet count to be very tow and made her prone to hemorrhaging, so she was used to visiting her hematologist and other doctors regularly. Abrahams recently noticed other symptoms that led to a diagnosis of lupus.

Results: She is on medication (steroids that cause her to gain weight), goes to the gym regularly, and eats a healthy diet.

Medical Tests and Screenings For Those in their 20s

* Annual physical exam, which checks blood pressure and weight

* General blood tests: fasting blood glucose, complete blood count, and cholesterol

* Urinalysis

* Vision exam

* Rectal exam, which checks for hemorrhoids and prostate cancer

* Women should get an annual Pap smear to check for cervical cancer or other disorders, as well as a regular breast exam.

* Men should examine their testicles for lumps or other abnormalities

Name: Kat Carney

Age: 35

Health concern: Polycystic Ovary Syndrome (PCOS) Symptoms: obesity, hirsutism, hair loss, irregular menstrual cycle

Degree of involvement: Carney was reluctant to visit a doctor unless something was seriously wrong. She was forced to go because of back pain.

Results: She began a drastic fitness regimen, educated herself, and took medication. In 14 months, she lost 90 pounds and saw a reduction in all symptoms of PCOS.

Medical Tests and Screenings For Those in Their 30s

* Annual physical exam, which checks blood pressure, weight, cholesterol, and vision. Women should get a Pap smear.

* EKG to check heart rate

* Screening for diabetes and cholesterol levels

* Urinalysis

tags: Kat Carney, pcos, magazine article

Subtle symptoms make polycystic ovary syndrome difficult to detect, but alert nurses can help women with the disorder
spot the signs

By Michelle Paolucci
August 2, 2002

Theresa Stevens, RN, had been looking forward to shopping in Singapore for weeks. Once there, she hurried into a clothing store and immediately started pawing through the merchandise in search of dresses. When none of the racks seemed to carry the size she was looking for, the shopkeeper pointed out one large item in the back of the store. Her heart sank. The shame stabbed her with the painful reminder that she was a large woman, a symptom of a condition called polycystic ovary syndrome (PCOS).

PCOS, originally called Stein-Leventhal syndrome after the two doctors who discovered the disease, is a disorder of the endocrine system with symptoms that range from decreased fertility and diabetes to hypertension and obesity.

According to the Polycystic Ovarian Syndrome Association, the disease affects as many as 10 percent of women worldwide, but many cases go undiagnosed because the symptoms are subtle. Patients may experience substantial weight gain in a short period of time, have a few odd facial hairs or a long menstrual cycle.

Nurses can be instrumental in helping patients detect signs of PCOS. Rather than passing off the symptoms as a consequence of lifestyle, nurses can suggest that patients request blood tests that can detect high levels of testosterone or abnormal levels of glucose and insulin-all markers for the disease. One nurse said she explains to her patients that PCOS is a serious condition that can affect their ability to conceive and even lead to heart disease and diabetes if left untreated.

"You would be surprised by how many women's physicians have said, 'Don't worry about it. This is perfectly normal. Having irregular periods is OK. Lots of women have irregular menstrual cycles.' Or, 'Let's wait. We'll put you on birth control pills,' " said Pam Malcolm, RN, clinical nursing coordinator for research for the department of endocrinology at the University of California, San Diego.

Malcolm said she tells PCOS patients that taking birth control pills can be a helpful treatment, but that some doctors hope the pill will simply make the symptoms disappear.

Hidden epidemic

But Malcolm also acknowledged that, unfortunately, the pill can mask PCOS symptoms. Stevens had been married a few years when she decided to try to have a child. She stopped taking the pill and waited a few months for her period to return naturally, but it never did. She mistakenly thought she was pregnant.

"Once I went off birth control pills, I never had another period on my own ever again," Stevens said.

When she discovered she wasn't pregnant, Stevens tried several doctors, who told her the problems would be solved if she could just lose 20 pounds. But Stevens was skeptical, suspecting something more serious was wrong. Luckily, she worked as a nurse at a fertility treatment center, where two doctors she knew finally confirmed her suspicions.

Her doctor, Samuel Thatcher, MD, Ph.D., said health care professionals typically either overlook the symptoms or see symptoms as isolated rather than related to one another. Women with PCOS often report that they have to see an average of eight to nine physicians before a PCOS diagnosis is made.

Stevens was diagnosed with the disease at 26. She started taking Clomid (clomiphene citrate), a fertility drug, and immediately became pregnant. Her son is now 8 years old.

Effective treatment

Although the pill may mask the disease as it did for Stevens, nurses such as Malcolm agree that it's an effective treatment after PCOS has been diagnosed. Without the hormones from the pill, PCOS causes a woman's body to produce excessive amounts of estrogen. The extra estrogen can thicken the lining of the uterus, which can lead to endometrial cancer. The pill also is beneficial because it decreases testosterone levels in the bloodstream. Too much testosterone can lead to excessive hair growth and acne.

The newest research on PCOS also has revealed a link between the syndrome and insulin resistance. Insulin resistance-a condition in which the body does not respond well to insulin, causing a buildup of the hormone in the blood-can be treated with insulin-sensitizing drugs. Many women with PCOS now are being treated with Glucophage, an insulin sensitizer, and these women report that they are getting pregnant and losing weight.

"But some are not," Malcolm said. "We just don't understand yet why it works [for some] and why it doesn't for others."

Scientists also are starting to suspect that the syndrome may have a genetic component. In a recent segment on NBC's "Today," Judith Reichman, MD, said that a woman has a 50 percent chance of developing the syndrome if her mother or a sister has it. Other research has shown a higher risk for women of Mediterranean descent or those who have fathers with hypertension or heart disease.

Habit of health

Although PCOS is starting to make headlines, some women are determined to accelerate awareness of the disease.

Kat Carney, a TV health reporter diagnosed with PCOS, remembered when she stepped on the scale during a doctor's appointment several years ago. It registered at 240 pounds. The last time she checked, it had been 150. In disbelief, she told the nurse, "There is something wrong with your scale." The nurse stepped on the scale to check it, and it was accurate.

Carney was shocked. Other oddities then started to make sense. Her hair had been falling out, she was perspiring more than usual and her clothes felt tighter. Ultrasounds showed that her ovaries were covered with cysts, and she was immediately diagnosed with PCOS.

Her doctor prescribed medications, but Kat Carney was determined to learn more about the disease on her own. Using the Internet, she started educating herself and began sending e-mails to other women with PCOS. She claims today that this support from the women on the Web was key in helping her to gain control of PCOS.

It wasn't until she discovered what she calls her "habit of health" that she stopped having PCOS symptoms.

"I didn't have a lifestyle that promoted health. I ate fast food, stayed up too late, was way too stressed out. So, I got off the medications and I got online," she said.

She started on a relatively unknown drug called flutamide, a medication she discovered in a French journal. The drug usually was used for men with prostate cancer.

Then, Carney started exercising and changing the way she ate. "I'd rather eat broccoli than take a pill," she said. She cut down on carbohydrates and increased the amount of fresh vegetables and lean meats she was eating. Her final step to health, she said, was taking control of the amount of stress in her life.

"I made it a habit to turn the TV off at 7 p.m., and I made sure I got enough sleep. I was at the gym at 5:30 every morning," she said.

Fourteen months later, she had lost 90 pounds and was virtually symptom-free. Then, she was offered a job on a start-up channel called Discovery Health, where she starred in her own show: "The Weigh We Were." She has been off medication for six years.

Kat Carney also hosts her own Web site (www.soulcysters.com), which boasts about 750,000 visitors a month and 7,500 registered members. Now a health reporter for CNN, Carney credits her experience with PCOS as a jump start to her career.

"Obese all of my life and now I am a health and fitness correspondent," she chuckled. Although not everyone may land jobs like Kat Carney, she offers this hope to other women like herself: "Don't take 'no' from a doctor. Make sure you get the right tests and as much information as you can."

Source: http://www.nurseweek.com/news/features/02-08/pcos.asp

tags: Kat carney, pcos, pcosupport.org, soulcysters.com

By John Morgan, Spotlight Health

With medical adviser Stephen A. Shoop, M.D.

	Kat Carney.

For millions of young women, "being late" doesn't mean they have poor time-management skills. A late or missed menstrual cycle can cause panic. But aside from a possible pregnancy, a missed period may actually be a sign of polycystic ovarian syndrome (PCOS), the most common hormonal problem among women of reproductive age. When Kat Carney, host of Discovery Health Channel's The Body Invaders, learned she had an ovarian cyst, she had never even heard of PCOS. Unfortunately, neither had her doctor. Or if he did, he failed to recognize her classic PCOS symptoms. "I didn't realize I had any problem because these symptoms were too easily attributed to other causes," shares Carney.

"My weight gain was because I didn't exercise enough. A few facial hairs and irregular periods were just wacky hormones. My doctor wasn't concerned with the cyst, so neither was I."

But her body began to tell her otherwise.

Over the next six years Carney's symptoms only got worse. She started losing the hair on her head while the facial hair increased, and she ballooned to 220 pounds. Desperate, Carney turned to another doctor, who ran some blood tests and did a sonogram which revealed that each of her ovaries had 30 cysts. It was only then that she learned she had PCOS.

PCOS basics

Kat Carney's frustration with the medical community is all too familiar to the millions of women who have PCOS. Very little is understood about the syndrome. Doctors don't know why an estimated 6-10% of reproductive age women contract the syndrome, although there seems to be a genetic predisposition that may be as high as 50% for daughters whose mothers are afflicted.

"Onset of the syndrome appears to be around puberty and tends to diminish with age, with ovulation starting again around 35," states Dr. Sam Thatcher, director of the Center for Applied Reproductive Science in Johnson City, Tenn.

An extensive Dutch study found that young women whose periods occur over 40 days apart don't get regular. "They don't grow out of it. And these girls are often at risk for PCOS," says Thatcher, author of PCOS: The Hidden Epidemic.

Thatcher advises that a young woman who has not had a period by age 16 should be evaluated because PCOS is one of the leading causes of infertility.

Symptoms of PCOS include:

• Ovarian cysts
• Irregular or absent monthly cycle
• Obesity or weight gain centered in the midsection
• Facial hirsutism (excessive hair growth)
• High blood pressure
• Acne
• Insulin resistance, elevated insulin, or diabetes
• Thinning of the scalp hair
• Infertility

According to Thatcher, PCOS is difficult for many doctors to diagnose because there are so many symptoms and not all women have all the warning signs. The three main forms of diagnosis are:

• Clinical diagnosis with the clinical triad of obesity, irregular cycle, and hair and skin problems associated with high androgen levels.

• Hormonal testing, including insulin and lipid panels.

• Ultrasound scan of the ovaries.

While the syndrome does not generally shorten a woman's lifespan, the many symptoms can seriously erode quality of life.

"Many women suffer intense feelings of isolation which lead to depression and eating disorders," details Thatcher, who is donating the proceeds of his book to PCOS advocacy and education groups. "PCOS threatens all things female. You get overweight. You have to shave. You get acne. And you can be infertile."

Heal thyself

The good news is there are effective treatments for PCOS. Most women are placed on birth control pills to regulate their hormones and anti-androgen medications to control the hirsutism. Fertility therapy typically includes the use of Clomid.

"My doctor put me on birth control pills and aldactone, an anti-androgen medication to combat the hirsutism," recalls Carney. "He said I'd have to take them until I was ready to try and have children."

But instead of feeling better, within weeks Carney was gaining more weight, losing more hair, and feeling more depressed. He explained she was gaining weight from eating fatty foods. Her depression was because she was obese, and the profuse sweating that she complained of was simply "hot weather."

Eight doctors later, Carney weighed 240 pounds and had had enough with "the exact same" diagnoses. Her depression was increasing, and her mood swings had intensified. She felt terrible, and she was determined to find out why.

So she turned to the Internet.

"I didn't have a choice. My doctors weren't giving me any other options," states Carney, who has started a Web site to help other women with PCOS. "I became a fanatic. I looked up every thing. I read every thing I could find, and I became my own advocate."

What Carney found was that the birth control pills were causing her weight gain, depression, and hot flashes. She stopped taking her prescribed medications and asked her doctor for Eulexin, a drug used successfully in Europe to treat excess body hair and PCOS. Because the medication wasn't FDA-approved for PCOS, her doctor refused.

Carney finally found a doctor who agreed to prescribe Eulexin as long as she came in for regular liver testing. She immediately began to feel better.

Eulexin worked for Carney, but Thatcher cautions it doesn't work for everyone, and that patients should always consult a physician. "Every patient is different with different symptoms. We need to tailor treatment to the individual needs of each patient."

Modern medicine

And Thatcher cautions that people should not assume PCOS is an illness associated solely with the ovaries and female hormones. In actuality, PCOS is a disorder of the entire endocrine system — the brain, pituitary gland, pancreas, liver, fat, and ovaries — which is responsible for maintaining homeostasis in the body.

"The most important advance in PCOS has been linking the syndrome to insulin resistance," explains Thatcher. "For some reason, the body seems to become deaf to the actions of insulin, so the pancreas speaks louder, making more insulin, which disrupts the body's equilibrium."

Recent studies indicate that as many as 50% of women with PCOS have insulin resistance and are at high risk for Type 2 diabetes. Because of the link to insulin resistance, many experts now advocate the American Diabetes Association's guidelines for a 250-500 reduction in calories. Exercise is also highly recommended.

"I read all the literature on the insulin connection. I knew I had to get my body well," explains Carney. "So I eliminated all refined carbohydrates and started going to the gym every morning and every night."

Six weeks later, the weight that she could never lose before began coming off. And her symptoms were remitting.

Over the next 14 months, Carney lost 90 pounds and eventually needed no medication at all.

"I feel better than ever. My weight has never been better, and I have no cysts," reports Carney. "My blood work indicates I don't have PCOS."

But if Carney gets stressed, skips working out, or eats poorly, her symptoms return.

Promising treatment

Another medication being used to successfully treat PCOS symptoms is Metformin, an insulin-altering drug that sensitizes the body to insulin and inhibits glucose production without risk of hypoglycemia. One of the side effects of Metformin is weight loss caused by gastrointestinal upsets.

"Metformin is an important medication for some, but not for all," advises Thatcher. "It got very popular on the Internet. Yet some women don't tolerate it well."

While PCOS cannot be cured, once properly diagnosed, it can usually be effectively managed. Even for infertility, Thatcher's clinic reports a fertility success rate of 90%.

"Just because you have PCOS, it doesn't mean you can't have children," says the 31-year-old Kat Carney. "Many can. I ovulate very regularly now."

As for children in her future, Carney says it's nice to know she has a choice. "The hardest thing has been getting used to being thinner," jokes Carney, who now weighs 150 pounds, yet still finds herself asking for a size 16. "I remember noticing men notice me for the first time. I ran home."

This is one race she might want to lose.