“It’s not your heart. It’s just _____” (insert misdiagnosis)

by Carolyn Thomas    @HeartSisters

It’s fair to say that you would not be reading these words had my heart attack not been misdiagnosed with a cheerful “You are in the right demographic for acid reflux!”  Had I been correctly diagnosed, admitted and appropriately treated during that first trip to the Emergency Department, I would likely never have started this blog in 2009. Nor would I be still writing years later about female heart patients being misdiagnosed in mid-heart attack.

We know that women continue to be under-diagnosed – and then under-treated even when appropriately diagnosed – compared to men presenting with cardiac symptoms.  In fact, as reported in the New England Journal of Medicine, female heart patients in their 50s and younger are seven times more likely to be misdiagnosed than our male counterparts.(1)

You know your body. You KNOW when something is just not right. Even if, like the following women, you too are sent home, do not hesitate to return to Emergency or to your physician if symptoms worsen.

Here’s my latest round of true tales from women whose cardiovascular disease is still being missed.   

   “I started with heart palpitations. Extreme fatigue. Nausea/indigestion. Pain down under my left breast radiating to my lower rib cage. This went on for about eight months. I’m a medic and knew something was off, so ran my own EKG several times, showing ST elevation in one anterior lead. But my family physician wanted to treat other issues, thinking my arrhythmia would self-correct. I ended up having a dissection of my left anterior descending coronary artery, completely shredding the artery. It caused me to suffer the “widow maker” heart attack.  My doctor missed the boat.” (Myocardial infarction).
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   “Had my first heart attack at age 39, sitting at my desk at work. Six years later, I was told by ER doctors that my new symptoms were now due to Spontaneous Coronary Artery Dissection, then told, no, it’s a Coronary Artery Spasm. Went home with chest pains while at rest, then told that because they were happening at rest, it couldn’t possibly be angina. Then told it was esophageal spasm, then told it must be anxiety as my pain happened any time any place. I went back to my cardiologist apologetically saying ‘I’m sorry to bother you again, but the symptoms of chest pains at rest, pain down left shoulder and into my jaw are exactly like just before my first heart attack six years ago.’ I was told it’s nothing to do with your heart, go and see a counselor as it’s just anxiety. I left his clinic not anxious, but very angry and feeling very stupid. His parting words were, ‘You are not going to have a heart attack!’ Guess what happened then?” (STEMI heart attack, age 45).

♥  “A cardiologist actually told me: ‘I can guarantee 100% this is not your heart. If you get the same pain again, do NOT go back to the ER – you’ll be wasting everyone’s time.’ Before this, I had been told my symptoms were likely: esophageal, indigestion, heartburn, anxiety, attention-seeking, mental illness, hyperventilation, bronchitis, blood clot on lung, an unknown virus, anything but my heart…” (Prinzmetal’s variant angina)

  “After complaining of a racing heart – starts up for no apparent reason – I was sent home from the ER with Valium! Made me sleepy, but no effect on the heart symptoms. After several visits to my family physician, I finally got a referral to a cardiologist. Three days in the hospital, multiple tests – finally correctly diagnosed.” (Mitral valve prolapse).

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  “My family physician told me I was just having anxiety attacks and needed to see someone about it. This happened on a Thursday, heart was racing, elevated blood pressure; pulse 110.  She sent me home with a prescription for depression meds. Had more chest pain, shortness of breath and checked into the ER on Sunday where they found abnormalities on echocardiogram, and an ejection fraction of just 35%.”  (Dilated cardiomyopathy)
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  “I had gone to the doctor about six months before my heart attack with severe indigestion. It was like nothing I had ever experienced before. I felt like there was a rock in my stomach and nothing would move. After thousands of dollars in tests, my doctor declared that she could not find anything wrong, and that I should go home and eat more fiber. Six months later, I had a heart attack, then five days later collapsed on the street. (Myocardial infarction, Cardiac arrest).

♥   “Ended up in the ER; the weekend doctor ran a couple tests for the insurance. I was told I was ‘neurotic’, and all I needed was SEX two or three times a week (husband is a long-haul trucker and on the road 4-6 weeks at a time). Seven days later, I collapsed on the job; after a visit with the other GP in the office, I had an appointment with a women’s cardiologist four days later; had open heart surgery three days after that.” (Aortic valve replacement).
 
♥   “My GP said she’d be happy to refer me – I think she was at a loss to explain my symptoms, but she seemed to think they were fairly worrying as I’d collapsed in front of her, blood pressure and pulse rate sky high, etc. I’d already been to Emergency three times in two weeks with chest pains, fainting, coughing and wheezing. I collapsed four times in front of medical staff at the hospital. Still no one believed it was my heart – each time, I was discharged with ‘non-cardiac chest pain’ or ‘viral infection’ etc, etc. One time I was even given an inhaler by the hospital doctor for ‘suspected bronchitis’.”  (Prinzmetal’s Angina and coronary microvascular disease)
 
  “It’s anxiety or stress, your heart is fine.”
“Are you sure you’re eating enough?”
“Get some more sleep.”
“You’re too young!”
(Atrial fibrillation, left-ventricular non-compacted cardiomyopathy)
 
  “I was first told by doctors that it was ‘bronchospasm’ without wheezing or coughing. Next it was ‘hyperthyroid’, except the blood work they did over and over wouldn’t show it! Even the cardiologist thought I was classic hyperthyroid, but did a stress test just in case. I was finally diagnosed correctly with coronary microvascular disease.  I was so happy someone finally got it.  It took six months to finally be referred to that cardiologist. My primary care physician would NOT refer me, so finally the pulmonary doctor took care of it. By that time, I was in a wheelchair and it hurt to even talk!” (Coronary microvascular disease).
 
  “My doctor used to tell me my chest pains were growing pains. Whenever I fainted in church, my mother would say I must have gotten up too fast or hadn’t eaten breakfast. I just want to make sure that others listen to their kids’ (and their own) symptoms. I wish you younger cardiac patients well. Trust your body and don’t take ‘it’s all in your head’ for an answer.” (Sudden cardiac arrest, age 25).
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Thank you to all of my heart sisters who shared these real life experiences.

 

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You know your body. You KNOW when something is just not right.

Even if you are sent home, do not hesitate to return to Emergency or to your physician if symptoms worsen.

NOTE FROM CAROLYN:  I wrote much more about identifying cardiac symptoms in Chapter 1 of my book, A Woman’s Guide to Living with Heart Disease”. You can ask for it at your local bookshop (my preference!) or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 20% off the list price).

 

NEWS UPDATE: January 25, 2016  ~ After 92 years, the American Heart Association released its first ever scientific statement on women’s heart attacks, confirming “compared to men, women tend to be under-treated, and including this finding: “While the most common heart attack symptom is chest pain or discomfort for both sexes, women are more likely to have atypical symptoms such as shortness of breath, nausea or vomiting, and back or jaw pain.”

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 Q: Have you ever been told “It’s not your heart” – before being finally correctly diagnosed?

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See also:

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