by Carolyn Thomas ♥ @HeartSisters
I walked out of our local hospital’s Emergency Department after having my textbook heart attack symptoms misdiagnosed as acid reflux. Much later, my increasingly debilitating cardiac symptoms were finally correctly diagnosed (same hospital, different Emerg doc). But after my hospital discharge, my pushy family and friends kept asking me about that first visit to Emergency: “Why didn’t you demand to see a cardiologist? Why didn’t you ask for more tests?”
As I was soon to learn, that is so NOT how most health care systems work – especially for female patients. . .
First of all, as a person who had never given even one moment’s thought to the subject of heart attacks, how would I have known which further diagnostic tests to ask for? As embarrassed as I was about making a big fuss over a little indigestion, how could I possibly be in any position to “demand” to see a cardiologist? And why would I have doubted the confident pronouncements of a man with the letters M.D. after his name?
According to an editorial called “Cardiology’s Problem Women” published in the medical journal The Lancet, women “have historically been evaluated by a protocol geared toward men.”
We know that for decades, most cardiac research on symptoms, diagnostic tools and treatments have been done either exclusively on (white, middle-aged) men, or with women and minorities represented in statistically insignificant numbers.
Yet our current treatment protocol guidelines are largely based on the results of such studies. As the Lancet editorial explained:
“The historic failings of cardiology to take a balanced approach to research have led to fundamental flaws in the care for women with heart disease, and have cost the lives of many women. Many guidelines for the management of the 50% of heart disease that occurs in women are extrapolated from studies that predominantly enrolled men.”
“Even after seeking help, women get consistently worse care. U.S. data has suggested that women with heart attack symptoms were less likely to receive aspirin, be resuscitated, or be transported to the hospital in ambulances using sirens and flashing lights than were men.
“These factors contribute to the disproportionately higher mortality in women with cardiovascular disease than men.”
This issue of women being excluded in cardiac research should no longer be happening anymore, but it is.
According to a 2018 study published in the Journal of the American College of Cardiology, women are still “under-represented in clinical trials for heart failure, coronary artery disease and acute coronary syndrome” when compared to the prevalence of women within each disease population, thus “preventing clear results on gender-specific response.”
We’re often told now that a contributing problem for the shocking outcome disparity between male and female heart attack patients might be the weird “atypical” cardiac symptoms that women present during a heart attack which cause us to be under-diagnosed compared to our male counterparts.
But as my paramedic/filmmaker friend Cristina D’Alessandro likes to ask:
“Why do we call women’s heart attack symptoms ‘atypical’ given that we make up over half of the population?”
Maybe it’s the weird jaw pain or crushing fatigue or vomiting or that “sense of impending doom” (surprisingly common in women leading up to a heart attack) that are confusing to some physicians.
Or the problem might be the weird way that women describe those symptoms. As Harvard researcher Dr. Catherine Kreatsoulas has found, many women don’t even use the word “pain” to describe chest pain to Emergency physicians, instead using words like heaviness, fullness, tightness, pressure or ache). These words are also apparently confusing to some physicians.
In fact, I’d bet my next squirt of nitro spray that, unless you clearly have the words “chest PAIN” recorded front and centre on your medical chart, the likelihood of moving on to the next possible non-cardiac cause of your symptoms will be dramatically increased.
But what if it’s neither the symptoms nor the words you use to describe those symptoms that are contributing to the under-diagnosis and – worse! – under-treatment of female heart patients even when appropriately diagnosed?
What if it’s the cardiac diagnostic tools being used that are part of this problem?
The research of Dr. Karin Humphries and her team in Vancouver, for example, suggests a potential issue with the blood test for the cardiac enzyme called troponin (typically a standard marker for heart muscle damage caused by a heart attack). But the commonly used troponin threshold in this test is based on a level that’s considered appropriate for men, but may be set too high for women – whose blood tests would be interpreted as “normal”. Dr. Humphries suggests that “setting a lower female-specific troponin threshold would improve the diagnosis, treatment and outcomes of women presenting to the Emergency Department.”
I’m not a physician, but even I knew that my textbook symptoms were pure Hollywood Heart Attack signs (central chest pain, nausea, sweating, and pain radiating down my left arm). More importantly, surely the Emergency physician who clearly told me: “You’re in the right demographic for acid reflux!” knew that pain down your left arm is not a symptom of acid reflux.
That statement was an example of an implicit diagnostic error called “anchoring bias“ (locking on to a diagnosis too early, and failing to adjust to information that contradicts that early assumption).
The trouble was, my diagnostic tests all came back “normal”. And if that happens to you, too, you can likely kiss a cardiac diagnosis goodbye.
In my case, I felt so embarrassed and humiliated for having made a big fuss over nothing but indigestion that it took me two full weeks before the increasingly debilitating symptoms became truly unbearable, forcing me to return to the same Emergency Department – but to a different Emergency physician, who this time called in a cardiologist, who correctly diagnosed my “widow maker” heart attack, which was swiftly and appropriately treated upstairs in Cardiology.
In my book, “A Woman’s Guide to Living with Heart Disease“ (Johns Hopkins University Press), I wrote a lot about about cardiac diagnostic issues plus doctor-patient communication (including more on Dr. Kreatsoulas’s research on how women describe cardiac symptoms). I also included these tips for appropriately and assertively communicating your cardiac symptoms to physicians:
- Adjectives are important. Get right to the point, but use strong descriptive words like dull, throbbing, intense, burning, tingling, heavy or piercing if appropriate.
- Do NOT minimize your symptoms. Don’t be like Elizabeth Banks in this must-see 3-minute film in which she responds to the 911 dispatcher (who has just asked what her symptoms are):“Nothing really. Just a little nausea, jaw tightness, shortness of breath, dizziness, pressure in my chest. . .” If you think you might be having a heart attack, say firmly, “I think I might be having a heart attack!”
Elizabeth Banks (whose mother and sister live with heart disease) wrote, directed and starred in “Just A Little Heart Attack“
- Describe how symptoms change your daily life and ability to function. Don’t just say you feel “tired” – talk about specific changes in your day-to-day life (“No longer able to carry the laundry basket up the stairs.”)
- Describe a location for your symptoms. Point to specific body parts if necessary.
- Start a Symptom Journal to help you track what you’re experiencing. Date/time of day/ what you were doing/eating/feeling in the hours leading up to the onset or worsening of symptoms, e.g. ‘I feel worse whenever I walk up our steep driveway.” A pattern sometimes emerges in such a journal.
- Be insistent about your symptoms if it feels like your physician isn’t getting it. Do not self-diagnose (e.g. “Could this just be a pulled muscle…”)
- If you feel embarrassed (for example, if you fear you may be judged or criticized for smoking), try saying, “This is hard to talk about, but I need your help.”
- IF SYMPTOMS PERSIST/WORSEN AFTER YOU ARE SENT HOME FROM EMERGENCY, do not be like me! Keep going back if things still feel worse. Do NOT be embarrassed to death.
Q: Have you ever experienced surprising diagnostic test results that later turned out not to match the condition?
NOTE FROM CAROLYN: If you’re interested in my book, A Woman’s Guide to Living With Heart Disease (Johns Hopkins University Press), you can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from my publisher, Johns Hopkins University Press (use their code HTWN to save 30% off the list price).
Cardiac Research and the Mystery of the Missing Facts
Mandatory Reporting of Diagnostic Errors: “Not the Right Time?”
The Weirdest Stuff I’ve Learned about Women’s Heart Disease
The Heart Patient’s Chronic Lament: “Excuse Me. I’m Sorry. I Don’t Mean to Be a Bother…”
What Doctors Really Think About Women Who Are ‘Medical Googlers’
Women’s Cardiac Care: is it Gender Difference – or Gender Bias?
Heart Attack Misdiagnosis in Women
When Your Doctor Mislabels You as an “Anxious Female”
Cardiac gender bias: we need less TALK and more WALK
How gender bias threatens women’s health
14 thoughts on “Women’s heart disease: wrong symptoms, wrong words or wrong diagnostic tools?”
Nice post, Carolyn. Thank you for taking the time to publish this information on women’s heart disease. It’s important to know symptoms of Heart disease. I really appreciate this post.
Carolyn, thank you for saying it like it should be said!
Due to a very abnormal EKG during my physical, I arrived at the ER with a definitive history of cardiac issues (5 stents). The ER Dr admitted me, ordering a battery of tests.
The cardiologist cancelled all of them, opting for only the cardiac enzymes for 24 hours. Several hours into my overnight stay, I experienced the worst chest pain ever. Hit the call button, nurse came, used her stethoscope, and said “It’s just gas, honey. Relax.”
I was released next day, but during a phone call before I left, I yelled, “They don’t care around here!” Suddenly, the cardiologist ordered an echo, which came back “normal.”
They hustled me out of the hospital. Went to my own cardiologist, who sent me for a Cath. Result: 80% blockage, right coronary artery AND 95% blockage, Widowmaker artery. Plus microvascular heart disease.
Talk about a trifecta!
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Hello Fran – GOOD GRIEF!!! What a story! I don’t know which part is more shocking – the cardiologist’s decision to cancel all tests but one, or the nurse’s inappropriate “It’s just gas, honey” response! I hope you were able to leave your important feedback for both of them.
Best of luck to you – take care and stay safe out there! ♥
Sending hugs and love to all my heart sisters and to Carolyn for all her wonderful, educational blogs!
You are so right, I tend to downplay symptoms. I tend to worry about the doctor’s schedule and not making them late for the next appointment. Going down the symptom tree takes time and listening, and docs are rushed because of 15-20 minute time limit. The ER says you’re probably just feeling PVC’s, everything is normal (that troponin blood test). Oh, I see you take Xanax, you have anxiety. Bingo. Must be that.
Definitely need more women’s studies, research and female cardiologists.
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Hello Paula – thanks so much for your kind words. We do need more studies on women, with sex-specific analysis, and definitely more female cardiologists (currently only about 13% of all cardiologists are women).
Having physical symptoms chalked up to anxiety is unfortunately common, almost as if once doctors see a patient’s medication list, they might as welll stop problem-solving! That’s not right…
Hang in there! Take care and stay safe. . . ♥
Thanks, Carolyn, for your validating response – again – to my angst 🙂 (see first comment below)
The lawyers got involved even though the doctors in that particular case believed my abnormal thyroid tests were borderline and wouldn’t be a problem. Lawyers are paid by hospitals to limit liability. If a patient is being treated for an apparently unrelated problem, abnormal test results on anything, to the legal mind, increases liability. I got a rather nasty letter in that particular case that clearly didn’t come from the doctors who signed it…
And then there’s the very real problem that many lab tests, touted as being so accurate, have ranges based on the population being tested by that particular lab company. In other words, an average of the people being tested. Mostly sick people, whether diagnosed or not.
That doesn’t make for a “normal” range, if we think of “normal” as being in the peak of good health. Oh, wait, that’s not the norm, at least in the US. Sheesh.
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You know, Holly, when you explain it like that, I can almost understand how a hospital whose staff ignores abnormal test results could be liable, and a hospital whose staff performs treatments despite “normal” test results could also be liable.
Years ago, there was a scandal in the U.S. around some cardiologists implanting coronary stents that were clearly not necessary. The poster child for stent fraud at the time was Mark Midei in Maryland, who in 2011 was relieved of his license to practice medicine because of fraud allegations. Clinical guidelines require that a coronary artery must be at least 70% blocked before a stent is appropriate to help open it up (and most cardiologists consider anything less than 50% blockage to be “insignificant”, based on current evidence).
But Midei’s court documents alleged that some of his patients were told they had coronary blockages in the 90% range, while a subsequent review of their records shows actual blockages closer to TEN PER CENT or less. Yet most accused cardiologists continued to insist that, in their professional opinion, the procedures they were doing were “necessary”. Some cardiologists were criminally charged (ironically not for harming patients, but for defrauding Medicare!)
So sometimes stretching those “normal limits” turns out to be criminal acts! No wonder the lawyers are onboard.
I’m going to leave one more comment that answers your question but is more about looking for one thing and finding something else.
Once I was instructed to go to the ER because I was having chest pain that radiated up both sides of my neck. I was scheduled to stay overnight for cardiac monitoring even though usual tests were negative.
One of the ER residents saw something suspicious about my Aorta on ultrasound… So they ordered a total body CT scan to look for possible aortic dissection.
It turns out my my aorta was fine but they discovered a huge 9 cm cyst on one of my Ovaries.
The pain left, cardiac tests were negative and I scheduled a consult with an OB-GYN.
I’m sure the chest pain had little to do with my Ovaries LOL – but the extra testing certainly served a purpose.
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I have to say, first of all, how impressed I am with that hospital:
– your diagnostic tests were negative, but they decided to keep you overnight for cardiac monitoring
– a sharp-eyed resident ordered a full body scan
That’s pretty stellar investigative care. Many women would have been sent home as soon as the initial cardiac tests came back “normal”. And who knows how long that large ovarian cyst had been there?
My friend Dave de Bronkart tells a similarly freakish story about seeing his doctor because of a sore shoulder. The shoulder x-ray picked up a tumour in his lung, which led to his ultimate diagnosis of Stage IV, Grade 4 metastatic kidney cancer at a very late stage. (Luckily and amazingly, he was successfully treated!)
Thanks for sharing your story with us, Jill. . . ♥
I was diagnosed with Asthma for years, with inhaled steroids and bronchodilator therapy. I did have exercise-related wheezing and the Albuterol inhaler seemed to help a little bit.
Strangely when my heart condition of Hypertrophic obstructive cardiomyopathy (HOCM) was properly diagnosed and properly medicated my “Asthma” went away.
The wheezing was caused by pulmonary vascular congestion due to a stiff Left Ventricle. What I needed was medication to relax the heart muscle.
I found out later with my own research that bronchodilators like Albuterol can help a little bit in cases of Pulmonary vascular congestion, but are not primary therapy.
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Some really good points, Jill – we know that there are some medical conditions that closely resemble other unrelated conditions (similar symptoms, fuzzy test results, and sometimes even treatments that seem to work).
Nitroglycerin, for example is a vasodilator used to help relax coronary arteries during an angina attack, but nitro can also sometimes relax the muscles during an acute episode of esophageal spasms or acid reflux (a non-cardiac condition that’s often blamed during heart disease misdiagnosis!)
I wonder how many people live uneventfully with one condition (sometimes for years) when the actual culprit is something much different?
Take care, stay safe. . . ♥
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My pituitary hormones (definitely those responsible for signaling production and release of cortisol and thyroid hormones) are nearly always “normal” in standard blood tests, but when they’re “normal” I have strong symptoms of low adrenal and thyroid production.
By the time my test results are above range (indicating an inadequate adrenal/thyroid gland response to the signaling), I’m truly at death’s door.
This has denied me the quintuple bypass one cardiologist surgeon told me I needed, and supposedly “elective” non-cardiac surgery that I needed done at a major medical center because the first had failed. Thank goodness one local medical center’s cardiac department treated me with 6 stents and an ICD, otherwise I probably would have arrived at an ER already dead before long.
I don’t know how much, if any, of pituitary hormone production or testing for it is gender-linked and/or biased. But I have definitely suffered because my physiology doesn’t meet the “norm” doctors WANT.
I use the word “want” because “expect” isn’t strong enough.
Doctors WANT their comfort zones cuddled around them. Without that, they seem to feel threatened, in danger, challenged, and that all seems to impact the treatment that I, at least, got (or, rather, didn’t get). Even to the point where some of my doctors who accepted my physical needs have been overruled by their legal departments.
Medically speaking, it sucks to be female!
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Thanks for sharing your perspective, Holly. What a good example of how our care providers tend to be rigidly guided by diagnostic test results! So much of medicine is just ruling out what the problem is NOT – a ‘negative’ test result means a kneejerk response: move on to other possible alternatives that might explain symptoms. But meanwhile, the patient is suffering.
It makes sense that evidence-based diagnostic results do guide medical treatment decisions (otherwise we’d still be seeing leeches and bloodletting as first-line treatment options). But what happens to patients like you, who clearly have a history of “normal” test results – despite very abnormal symptoms? And I can’t even grasp how a physician’s assessment can be overruled by lawyers!?!
I appreciate your “want” and “need” explanations. It’s so true: if I suspect that I might know what the problem is, and the diagnostic test clearly confirms what I suspect, that’s a very satisfying scenario. But when a diagnostic test fails to measure what is measurable, what can happen, as Dr. Jerome Groopman, in his wonderful book “How Doctors Think“, explains, “There is the over-confident mindset: people convince themselves they are right because they usually are.”
Take care, and stay safe out there. . . ♥
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