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. 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.
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 disease and are more likely to delay seeking treatment once they experience symptoms.
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.” 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.
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. 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. 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.
How to Prevent Misdiagnosis
Choose the right doctor
Very often the difference between feeling like you aren’t being paid attention to and getting the care you need comes down to your choice of doctor. Your doctor should be someone with whom you feel comfortable sharing your health concerns. Finding a doctor you communicate well with before you really need one can cut down on the stress of experiencing worrisome symptoms and looking for a new healthcare provider at the same time.
Recommendations may come from friends (be sure to check credentials too) or you can call a local hospital for a referral. Your insurance provider may also have a tool that lets you search for doctors who accept your insurance.
Know your symptoms
To give your doctor the best chance at getting your diagnosis right from the start, be specific and objective about your symptoms and ready to describe them clearly. Keep describing your symptoms until you feel you’re understood. Take time to organize your thoughts before visiting the doctor: good communication with your healthcare provider is a key step in getting the best possible healthcare.
Tell your doctor:
- What symptoms you’ve been having
- How long you’ve been having them
- How often they occur
- What time they usually occur
- What you have been doing when they occur
YES: “Early last week I started feeling a tightness in the middle of my chest that comes and goes, and my heart feels like it’s pounding against my chest. It happened once when I was walking to the store and a few times when I was watching TV. What do you think is causing this?”
NO: “I just haven’t been feeling well lately. My chest hurts and I’ve been feeling stressed and nervous. Am I just being paranoid? ”
YES: “I haven’t been able to finish my daily walk without getting out of breath and having to stop and rest.”
NO: “Lately I feel like I just don’t have any energy.”
Know the facts
Be an informed consumer: read about your condition(s) and symptoms online and in books, magazines, and newspapers. Learn what the standard tests are, what limitations the tests have, and what other tests can be used. Don’t fall into the trap of trying to diagnose yourself. Health knowledge should be used to make sure you get the best care possible and know your options: no amount of research can replace the specialized training and experience of doctors.
Make sure both you and your doctor receive and follow up on any test results. Don’t assume that “no news is good news.” If you don’t get the results when expected, call your doctor and ask for them. When you get the results, ask what they mean for your care.
I think I’ve been misdiagnosed. What can I do?
The most important thing if you think you’ve been misdiagnosed is don’t stop until your concerns are addressed. No one knows your body better than you do. Even if your doctor doesn’t find anything wrong with you or tells you it’s just your nerves, don’t stop seeking care as long as you have a problem. Ask your doctor about testing options. If you feel your doctor isn’t listening to you, you can get a second opinion or change doctors.
Get More Tests or Ask for Tests to be Repeated
No diagnostic test is foolproof, and each one has its limitations. Although rare, it’s possible that your test was a false negative (it missed a problem that was there) or a false positive (it says there is a problem that doesn’t really exist). Some tests will fail if the patient has certain other conditions, and some tests (such as the exercise ECG) are less reliable in women than in men. When test results are inconclusive or when you are simply not convinced of your diagnosis, ask your doctor whether the test is really conclusive, whether there are alternative tests that may be more reliable, and what next steps he or she is planning to get to the bottom of your symptoms. Do research on your own about the different available tests, what they’re used for, and how well they work in women. To learn more, visit our section on Testing & Diagnosis.
When should I Get a Second Opinion?
If you know or suspect you have heart disease, but your doctor or the ER doctor hasn’t addressed all your concerns, you should get a second opinion from a clinical cardiologist (also called a noninvasive cardiologist). After a visit to the emergency room, always follow up with a visit to your doctor or a cardiologist the ER doctor is NOT a substitute for your own doctor.
You should seek a second opinion if:
- You are unable to communicate with your doctor, or he or she refuses to address your concerns
- Your symptoms haven’t gotten any better after following the treatments and lifestyle changes your doctor recommends
- You are experiencing increased anxiety or missing work because of your symptoms
- You simply want another point of view regarding a decision on diagnostic testing or treatment options
Tips On Getting a Second Opinion
Don’t worry about offending your doctor by getting a second opinion: your health is the first priority. When you go for a second opinion, make sure you have a copy of all your own medical records and bring an extra copy for your cardiologist. You may have to call the different medical offices and hospitals where you received testing or treatment. If they ask why you need the records, simply tell them that you want your own copy. To avoid delays, it’s best not to ask to have your medical records faxed: if you go get them in person, you’ll save time and frustration.
Make sure to bring:
- Results of electrocardiogram ( ECG) and blood tests
- Echocardiogram, Holter monitor, and coronary angiogram reports
- Medical records from any past hospitalization
- List of medications you are taking, including supplements
- List of allergies (to medications or the dye that is injected during an angiogram)
How can I find a cardiologist who specializes in women’s health?
It can be difficult to locate a cardiologist who is sensitive to the needs of women with heart disease, and the search can be frustrating. For most women, there is simply no shortcut to working with your insurance provider to find cardiologists who take your insurance until you find one who will truly listen. Know your symptoms, do your research, and make yourself heard.