by Carolyn Thomas ❤️ Heart Sisters (on Blue Sky)
Women showing up at the Emergency Department seeking help due to their frightening cardiac symptoms can often feel “stopped at the gate” .This means they’re denied critical assessment and management of both acute heart disease signs and symptoms.
But signs and symptoms have different meanings. Your body’s physical symptoms are essentially something that feels out-of-the-ordinary, which may indicate a disease or medical condition. Symptoms are reported by the person who is experiencing them. And signs are what your health care professional can see or measure. These two words are often used interchangeably, but they’re not the same. .
And consider women (like me, for example) whose cardiac symptoms are not taken seriously when we get “stopped at the gate” in the Emergency Department. In their landmark report called Ms. Understood, Canada’s Heart & Stroke Foundation reported this alarming conclusion:
“Women’s hearts are victims of a broken system that is ill-equipped to diagnose, treat and support them.”
I was one of those women, misdiagnosed and sent away from the Emergency Department in the middle of what doctors call a widow-maker heart attack – despite my textbook cardiac SYMPTOMS of central chest pain, nausea, shortness of breath and pain down my left arm. But the Emerg doc who confidently told me: “You are in the right demographic for acid reflux!” before sending me home had already assessed my cardiac SIGNS as being “normal,”
This kind of misdiagnosis will not surprise you if you’re a regular reader of Heart Sisters articles. Cardiac researchers continue to publish study after study on why female heart disease is significantly more likely to be misdiagnosed compared to our male counterparts. The Heart & Stroke Foundation also calls female heart patients “under-researched, under-diagnosed, under-treated, under-supported and under-aware.”
Dr. Manjaree Daw, a Cleveland Clinic Internal Medicine physician, explains why both signs and symptoms do matter:
“Symptoms refer to your own experience. These things are very real, even if other people can’t see them. Symptoms alone can’t diagnose a disease, but they help determine the next steps for tests or treatment.”
But she adds that symptoms are also subjective – meaning they’re based on opinions and feelings, and can vary from person to person:
“Two people can have the same disease, but different symptoms. Pain, for example, is a commonly reported medical symptom, but we can’t take a picture of it or detect it with a test. And many diseases are asymptomatic– meaning they have no symptoms. High blood pressure, for example, is typically an asymptomatic condition.”
Dr. Daw describes high blood pressure (also known as the “silent killer”) like this:
“You may have it for years until it has done severe damage to multiple organs.You can’t feel it for a while, but it can become very serious.”
This can be particularly serious if you’ve ever experienced high blood pressure (hypertension) during one or more of your pregnancies. See also: Pregnancy complications strongly linked to heart disease
When I was diagnosed with breast cancer in March, it was a freakishly surreal experience – mostly because I was generally feeling so good – surprisingly good! How could this even be possible? How could I have a malignant tumor growing inside my body – yet I’m not feeling sick?
One glaringly obvious culprit: we need academic researchers to recruit more female participants in cardiac research. Without equitable female representation in these studies, our physicians will continue to use diagnostic tests, implantable devices, and other medical tools that have been developed, researched and tested on (white, middle-aged) men for decades – as if they believe that women are just small men.
We simply cannot continue publicizing research results like the famous 2020 ISCHEMIA study that enrolled 5,000+ participants in a $100 million research project – in which over 75 per cent of the participants were men! My question to these eminent cardiac researchers is this:
“How could anyone accurately extrapolate how the study’s conclusions apply to female heart patients when women made up only 23 per cent of all participants being studied?”
When I was invited to speak at a hospital fundraising campaign event to raise money to purchase new cardiac equipment for our cath lab, I asked my audience this blunt question:
“Does it really matter if we have the most expensive state-of-the-art C-arm in our cath lab if female heart patients are not able to get past the Emergency Department gatekeepers downstairs?”
And – in the wise words of author Maya Dusenbery in her must-read book Doing Harm: The Truth About How Bad Medicine and Lazy Science Leaves Women Dismissed, Misdiagnosed and Sick:
“Believe women when we tell you we’re sick!”
♥
Q: What was your worst symptom or sign ever ? (no matter the diagnosis)
NOTE from CAROLYN: My blog-turned-book, A Woman’s Guide to Living with Heart Disease is based on many of my 900+ blog posts about women’s unique experiences when we become patients. You can ask for it at your local library or neighbourhood bookshop (please support your favourite independent bookseller) 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).
P.S. Dear readers: Thank you for your supportive and kind comments in response to my recent breast cancer diagnosis. So appreciated… For more updates, you can also read:
Heart Sisters 
Like many of you, I’ve had less than ideal ER experiences, and my symptoms of nausea, sweating, tightening pain around my chest being dismissed as gallbladder problems – when in fact it was a heart attack.
Last summer, while at the beach and not close to a big hospital, I “managed” my own symptoms and when I reported to my cardiologist and GP, they were both horrified and scolded me. Deservedly so.
But my cardiologist had a very useful suggestion: Print out her visit notes, keep them in my purse, and if you have symptoms, even if you can only get to a tiny medical facility or doc in a box…she told me to insist on two high sensitivity troponin tests, an hour apart if you aren’t being taken seriously. It is also important to print out the article- I will try to find it- that reveals significant troponin levels are lower for women.
The providers may still balk at this, but you may have a better chance if you have MD notes, the article, and the act of doing this also shows that you are informed.
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Hello Helen – I too am looking for that article. I’ve been following the research of Dr. Karin Humphries in Vancouver for several years For example, she say:
“A rise in troponin levels in blood tests has typically been a standard marker for heart muscle damage during a cardiac event. But the troponin threshold commonly used in this test is based on a level that’s considered appropriate for men, but may be set too high for women – meaning that even our positive blood tests can be misinterpreted as “normal”. Setting a lower female-specific troponin threshold would improve the diagnosis, treatment and outcomes of women presenting to the Emergency Department.”
See Helen’s response BELOW for links to the studies she mentioned:
I’m of two minds about the effectiveness of patients “insisting” on specific tests or instructions with cardiologists. Many of my readers have told me of their unfortunate experiences with dismissive docs who have zero time for such “informed” patients. It will depend of course on the physician’s openness to listening. An Australian reader for example, carried with her a letter from her cardiologist (just as your cardio recommended) but was gobsmacked when a physician took her papers and without hesitation, dropped them straight into the recycling bin next to his desk, and told her ‘This is what happens when my patients bring this stuff in.”
And why must it fall to the patient (arguably the most vulnerable and least powerful person in the room!) to be the one who is educated about such studies in front of a new physician (often a physician she’s never met)? As you probably already know, I’m all for empowered and informed patient behaviour – but often it’s still not a level playing field out there…
Pls let me know when you find that article so I can include a link here.
Take care. . .❤️
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The original paper was done by Shah, ASV “High Sensitivity Troponin and the under-diagnosis of myocardial infarction in Women: Prospective Cohort Study” published in British Medical Journal in Jan. 2015.
There’s a useful blurb in Medicine.net “High Sensitivity Troponin Test Ranges and Values” by Cunha, Kumar, Stoppler from September 2024.
I agree with you about the trickiness of “insisting” on anything. What I generally try to do is to take a very respectful, deferential approach. After all, what matters here is my outcome- it isn’t the time for me to make a philosophical statement, no matter how important it is. I have to ensure my survival.
So…I tend to be very polite, very nice, and in this particular case would say something along the lines of, “I realize you are the physician here, but my cardiologist has recommended I show providers these records in these types of situations. I’ve also been advised to remind providers of the gender specific troponin level cutoffs.”
Regarding insisting on high troponin tests, I think the request can sound less strident if phrased “I think I’m having a heart attack. I really want a high sensitivity troponin test. Would that be possible? I’d really appreciate your approving that.”
We’ve talked about this before, but really, every single time I see a provider I strategize as to how best to accomplish my goals.
Of course they have years of medical training that I don’t have. But I have way more experience with my body than they have. So communication is key.
I know that since I am now old (almost 73) in their eyes there may (or may not be) stereotypes operating. And I have to be careful with my stereotyping too- we all do it.
So, I try to be very polite, and use “I” statements instead of phrasing things as commands. “I’d like this” – “I’m wondering if you would consider this: I’m very concerned about xyz.” I am not always successful but it’s worth a try.
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Helen, your approaches are brilliant strategies – non-threatening, respectful, and yes deferential. And lots of “I” messages – “I’m very concerned…” I’d really appreciate. . .?
I remember taking an Active Listening class decades ago at work when our group (a bit punch-drunk by the end of a long day!) were asked by the teacher to give examples of an “I” message, called out things like:
“I” think you’re a jerk?!!!
Take care, Helen – thanks for your thorough and comprehensive interest in this important (and often overlooked) troponin issue for women.
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I had a cortisone shot for a nerve issue which, in hindsight, they think caused my blood pressure to rise. I had days of not sleeping well so I went to the doctor. I was not a frequent patient at all but ‘something’ told me to go and discuss my reaction to the shot, even as I felt stupid to be going for a feeling I could hardly explain. I told him what had happened and that something had been ‘just not right’.
Luckily, I had one of the good doctors. He listened to me, he asked great questions and then sent me for a stress test, which I failed.
After more tests, the end result was a triple bypass with the worst blockage (just under 90%) being a widowmaker at the very stop of my left artery.
My Dad passed away from a widowmaker. I can never be grateful enough to my doctor who literally saved my life by not dismissing my complaint of something just feeling weird and not right.
P.S.: My cardiac surgeon said I was a ‘typical atypical female’ with none of the typical symptoms – men’s symptoms, of course. When he said that, I remember thinking “if I’m a typical atypical then I can’t be that atypical if you recognize me”.
His words stuck with me and started me on my journey of learning about how and why women’s hearts are different.
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Hi Gayl – WOW! your life WAS indeed saved by a thorough assessment from that doctor!!
And also saved by your own niggling “something is just not right” gut feeling. You paid attention to that (many women would NOT – researchers tell us that women are far more likely than our male counterparts to minimize cardiac symptoms, blame them on non-cardiac causes, apologize to doctors for “bothering” them over nothing, etc. I’m also guessing that many good doctors can easily dismiss “weird” symptoms. Something about you, and how you presented, and the answers you gave him convinced that doctor to order the stress test.
And YES women are NOT just small men!!
Take care. . . . ❤️
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My worst was what I thought was acid reflux at the base of my neck. What was so confusing was the symptom was coming and going over 4 days while I slugged back Pepto Bismol. It finally got so bad I went to the ER, where I did not say the magic words “chest pain” because I didn’t interpret what I was feeling as chest pain.
After some delay and the EKG showed the heart attack, I was then whisked to the cath lab. So I can’t complain about a misdiagnosis, only my own stupidity and denial. But when I asked the cardiologist why the symptoms came and went she said she didn’t know.
I had to read here to get an explanation!!!
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No wonder you didn’t interpret that symptom as “chest pain”! But don’t translate your reaction as stupidity or denial! You’re not alone – many of us have this stereotypical image of a heart attack (usually an old guy bent over clutching his chest in agony until he crashes unconscious to the ground – which is how we typically see this image in the media!
And that image is of a model being told by a photographer “act like you’re having a heart attack”. (more probably, he’s portraying sudden cardiac arrest (an electrical problem that stops the heart beating) unlike what you and I had (a blocked artery = a plumbing problem!)
When I was at Mayo Clinic, we were told: “Any symptoms between NECK & NAVEL should be considered cardiac in origin until proven otherwise!
I think the most important way to help us decide if it’s time to seek urgent help is asking: “Does this symptom feel NORMAL for ME?”
Interesting point about docs being unfamiliar with the Slow Onset Heart Attack – remarkable because it’s fairly common in women!
Take care. . . ❤️
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