Help! I think I've been misdiagnosed.
Having heart disease symptoms is a real burden, but the added emotional stress of having people, especially doctors, refuse to take your concerns seriously can almost be too much to bear. The good news is that many women have been in your shoes before and were eventually able to receive the treatment they needed. While it may be frustrating that some doctors don't take women's concerns seriously, know that there are doctors who are sensitive to the special problems of heart disease in women and ways to increase the chances that a doctor will listen. It is a sad fact that some women are still misdiagnosed, and sometimes you must be willing to fight to get the care you need.
The only way to reduce the rate of heart disease misdiagnosis in women is to increase the awareness of this problem in healthcare providers and in women themselves. Doctors need to know how widespread heart disease in women is, how to recognize women's symptoms, and how to use the right tests to make a diagnosis; women need to know their own risk and what they can do to make sure they receive the right diagnosis.
This article will tell you how and why misdiagnosis happens, how to prevent it, and what to do if you think you've been misdiagnosed.
What exactly is misdiagnosis?
Misdiagnosis is one type of medical error. Misdiagnosis can range from a complete failure to diagnose (totally missing a disease) to wrong diagnosis (for example, diagnosing anxiety instead of a heart attack) to a partial misdiagnosis (for example, diagnosing the wrong subtype of heart disease or the wrong cause of the disease or its complications). A related medical error is delayed diagnosis, which is when a doctor does not recognize a disease until long after it should have been identified.
How common is misdiagnosis?
Misdiagnosis rates are different for different diseases and exact numbers are hard to come by, but a poll commissioned by the National Patient Safety Foundation found that one in six people had experienced a medical error related to misdiagnosis.1 Women (especially younger women) with heart disease are more likely than men to be misdiagnosed. One of the few available studies of heart disease misdiagnosis looked at more than 10,000 patients (48% women) who went to the emergency room with chest pain or other heart attack symptoms. The investigators found that 1 in every 50 people who had suffered a heart attack were misdiagnosed and sent away from the hospital. Women younger than 55 were seven times more likely to be misdiagnosed than men of the same age. The consequences of this were enormous: being sent away from the hospital doubled the chances of dying.2
Why does misdiagnosis happen?
There are many factors that contribute to women with heart disease being misdiagnosed. Despite an increasing awareness of the scope of the problem of heart disease in women, old attitudes about heart disease being a man's disease are still prevalent. Added to the fact that women with heart disease can have different symptoms than men and tests for heart disease often work differently in women than in men, this results in women having a higher chance of misdiagnosis.
Heart Disease Is Not A Man's Disease
One factor that may contribute to women being misdiagnosed is the persistent myth that heart disease is a man's disease, or a disease of the elderly. Many doctors may be reluctant, therefore, to consider heart disease when a young woman has chest pain and instead will look for evidence of some other cause. This prejudice is not just found in healthcare providers: women are less likely than men to realize they are vulnerable to heart disease3 and are more likely to delay seeking treatment once they experience symptoms.4
Women's Heart Disease Symptoms
Women with heart disease experience different symptoms than men. Although chest pain is the most common heart attack symptom in both men and women (occurring in about 2/3 of patients), most studies find that women are less likely to experience chest pain than men—especially the classic crushing chest pain of the “Hollywood heart attack.”5, 6 In addition, women often don't experience chest pain in the weeks leading up to a heart attack (a hallmark pre-heart attack symptom in men). Patients with a heart attack who don't have chest pain are more likely to be misdiagnosed and more likely to die in the hospital.6
Women having a heart attacks are also more likely than men to experience so-called “atypical” symptoms, such as back, neck or jaw pain, nausea or indigestion, tiredness, and anxiety. Nausea and vomiting during a heart attack can lead to misdiagnosis as a stomach or esophagus problem (such as acid reflux). Reporting anxiety and indigestion, combined with the fact that women are more likely than men to report heart disease symptoms during times of mental stress, make it more likely that symptoms are attributed to a psychological cause such as a panic attack.
While we now know that women having a heart attack have unique symptoms, there is very little known about whether the gender difference in symptoms holds true in the earlier stages of heart disease. If it does, we may be missing the opportunity to diagnose women with heart disease early, when a heart attack could still be prevented.
Heart Disease Testing
Despite these problems, appropriate testing can, and should, tell the difference between heart disease and something else before further damage is done; however, women are less likely than men to receive some diagnostic tests and some tests don't work as well in women. Most tests for diagnosing heart disease were fine-tuned in studies containing mostly men, so it isn't surprising these tests are not always ideal for the needs of women. For example, the exercise stress test ( treadmill test) is less accurate in women than in men.7,8 Women are more likely to have an inconclusive test (one that is not clearly positive or negative) and changes in levels of the female hormone estrogen can affect the test. Accuracy rates improve when the stress test is combined with imaging studies such as an ultrasound or a nuclear stress test.
The gold standard test for diagnosing atherosclerosis in both men and women at high risk for heart disease is the invasive angiogram, but women may be less likely than men to be referred for an angiogram.9 In women who do have an angiogram for chest pain, about half of them don't have major blockages in their arteries, prompting doctors to write off their symptoms; however, awareness is increasing of Syndrome X, a disease of the vessels of the heart that occurs more often in women and restricts blood flow to the heart without blocking arteries.