by Carolyn Thomas ♥ @HeartSisters
Do you know the difference between a medical condition that’s underdiagnosed, and one that’s misdiagnosed? I thought you’d never ask. . . Underdiagnosis is a failure to recognize or correctly diagnose a disease or condition, especially in a significant proportion of patients, as in: “Heart disease in women is still being underdiagnosed compared to our male counterparts.”(1) But misdiagnosis is an incorrect, partial or delayed diagnosis of one individual’s illness or other medical problem, as in: “I left the Emergency Department with a misdiagnosis of acid reflux despite my textbook heart attack symptoms of central chest pain, nausea, sweating and pain down my left arm.”
The trouble is this: the more that misdiagnosis happens to individual women, one after another, the more likely we are to continue seeing underdiagnosis of women heart patients as a whole. Thank you to these heart patients who shared their own experiences of surviving a misdiagnosis:
“The first cardiologist told me that my abnormal test results were a ‘false positive’ because I am a woman. He said he could not help me. The second cardiologist, a woman, wanted to do a ton of tests – she said I could be in her study. It was all about HER, not about me! When I told my third cardiologist (who finally correctly diagnosed my coronary microvascular disease – or MVD) about my unpleasant experience with my first cardiologist, she offered to have her office send him the update on my correct diagnosis and treatment, with information about MVD.”
BA, age 53, California
“As a health professional, I know that patients like me can be thought of as time consuming and not cost-effective. I was once discharged after five days in the hospital and told to ‘go find someone in the city who treats coronary spasm, do an internet search, you are good at that, since it is beyond the scope of this institution.’ This process has been demoralizing at times and frightening. I was finally diagnosed with coronary spasm by a wonderful doctor. I am taking meds to control the spasms, but still having breakthrough twinges of tightness, constant fatigue and feeling light-headed. I am hoping we can titrate the dosage of my meds (currently verapamil 120 long acting).”
HD, New York
“It took about two years to get a diagnosis. I was treated for acid reflux for about a year (my cardiac workup then was ‘normal’) before being finally diagnosed with endothelial dysfunction. I’m in the medical field, and looking back now, there were multiple symptoms I was having before that were heart-related. But I knew to seek second opinions after the ER doctor told me I was fine. I knew what symptoms to tell my cardiologist about, and when to push for further testing. It’s hard for me to read some of the stories of people who end up with significant heart damage because they were misdiagnosed. I was very shocked myself to see my first abnormal EKG. I am trained to know the signs of heart disease, yet I missed them in myself until this point. My cardiologist has also suggested that I have coronary vasospasms. I feel fortunate to have a group of cardiologist who at least listen and try to treat this frustrating disease. But I still have a million unanswered questions.”
CR, age 39 when diagnosed, Texas
“I went to the ER because of chest pain and was diagnosed with left ventricular hypertrophy and put on high blood pressure meds. When I saw a cardiologist for a followup visit the next week, he said my chest pain upon exertion was due to an esophageal spasm and he referred me to a gastroenterologist who just said to me, ‘You should lose weight.’ After an endoscopy and a colonoscopy, the gastroenterologist could find nothing wrong. I switched cardiologists. The new one ordered an angiogram and discovered blockages in my arteries. If you feel something isn’t right about a diagnosis, please seek a second opinion.”
EM, age 63, California
“I went for years with an intermittently irregular cardiac rhythm that was never caught on an EKG. My primary doctor chalked it up to perimenopause. I had also been diagnosed with asthma because I had an underlying cough and experienced episodes of shortness of breath–for which I was prescribed an albuterol inhaler. In September of 2008, after having undergone a total hysterectomy at the age of 50, the day I came home after surgery I landed right back in the hospital with a very rapid, irregular heart rate. Diagnosis: lone atrial fibrillation–later diagnosed as paroxysmal Afib, which very much affected my quality of life. In February of 2010, after having changed doctors, numerous medications, and several bouts of Afib NOT controlled by any medication, I had a cardiac (pulmonary vein) ablation. I found out that heart problems like this run in my mother’s family, and that she had also been diagnosed with Afib. Although I now still occasionally have arrhythmias that last at most a minute or so, I am considered ‘cured’. I also have had NO more ‘asthma’ attacks.”
WF, age 59, Kansas
“Sadly for us, difficulty in getting diagnosed caused two deaths in our family. Back in 1997, both my sister and I were getting cardiac symptoms: odd arrhythmias, feeling faint, exhaustion. We were repeatedly told not to worry, and that it was just stress. Then on the morning of September 30, 1999, my sister died with no warning, just 33 years old. A post-mortem revealed that she had died of Sudden Adult Death Syndrome. Both my daughter Nadine and I were referred to a local cardiologist; we decided to take his advice to not worry and get on with our lives.
“But my symptoms worsened; I landed in the cardiac unit at our local hospital more than once. None of the tests showed anything more than just ectopic beats*, which we’d seen when my sister and I were first tested, so I just carried on. On January 25th, 2002 my phone rang one morning and I was told my daughter hadn’t turned up for her final exams at college. I couldn’t reach her on the phone so my husband and the college matron went round to my daughter’s house where they found her dead in bed.
“My daughter had seen our GP in the month before she died because she’d felt tired & unusually faint a couple of times. She was told it was “just hypoglycemia” and to eat before activity. After Nadine’s post-mortem, we learned that she’d died of Sudden Adult Death Syndrome, just like my sister. We were genetically tested, but not given any treatment although my genes ‘weren’t quite right’. But I became unwell again with the old heart symptoms, and while I was in the cardiac unit in the hospital, another cardiologist who had heard about the loss of my daughter wanted to talk to me. He’d studied the heart conditions that caused SADS and knew that I was in immediate danger of dying. The next morning, he implanted my first ICD (Implantable Cardioverter Defibrillator). That wonderful doctor saved my life. I found out from him that ectopic beats in families with a SADS history meant that we were at risk. My son had his first ICD put in at 11 years of age. We were finally told that we have Long QT Syndrome. I’ve gone on to develop other problems like atrial fibrillation and coronary artery spasms and had exactly the same trouble getting those diagnoses, too. *ectopic beats: small changes in a heartbeat that is otherwise normal, leading to extra or skipped heartbeats
NS, age 57, UK
“My misdiagnosis story is 47 years in the making. I was diagnosed with a heart murmur of the mitral valve when I was born, went through four years of monitoring by a cardiologist, then periodic monitoring for 14 years after that. I played competitive soccer in high school and on recreational teams. My only symptom was shortness of breath after extreme exertion. I was in the Army for six years. Could do the required physical training, but again with shortness of breath from time to time. In 2014, I lost 50 lbs and got in the best shape of my life. In 2015, went to the doctor for a checkup. It had been 20 years since I had had a cardiac checkup, so she sent me to get an echocardiogram (EKG). After that, my GP sent me to cardiology. I was finally diagnosed with a mono cusp aortic valve that was in severe stenosis. So then came the whirlwind of appointments with surgeons and testing, then open heart surgery one month later. I am now so much better.”
DG, age 49, California
“Pre-menopause, I was in ever-increasing pain that I described to my GP as if someone had pushed their fist right through my body below my left collar bone and just above my heart. I was eventually sent to a rheumatologist who diagnosed fibromyalgia. Three long years followed during which EVERYTHING I went to my GP for was dismissed as fibromyalgia. I joined a support group but had nothing in common with anyone else there. A change of address led to a new GP who was also dismissive and talked about my pain perception. (I wanted to poke her in the eye to see if she perceived that as painful!) Eventually, she thought my heart might need to be checked. Whilst awaiting an appointment to see a cardiologist, that elephant sat on my chest and we had to call paramedics. Ambulance to Emergency because these very professional medics wanted to be sure. Overnight stay for observation. Cardiologist at bedside with student doctors talked to me whilst facing his eager audience, and in a very few minutes had decided I was merely anxious and there was nothing wrong with my heart. But I was eventually diagnosed with coronary microvascular disease (MVD) and coronary artery spasm (Prinzmetal’s Angina), a diagnosis ultimately confirmed by a lovely cardiology professor in London, and the rest is better!”
MEO, age 57, Hampshire, UK
“I lost precious heart tissue because the paramedic argued with my husband over whether or not I was having a heart attack despite the fact that I’d had my first heart attack only nine months prior. The paramedic told the Emergency Department that I was having an anxiety attack when, in fact, my Left Anterior Descending coronary artery was blocked with a tear caused by SCAD (Spontaneous Coronary Artery Dissection). The delays caused by the paramedics’ misdiagnosis and inaccurate communication inhibited my ability to seek prompt medical care and resulted in significant heart damage. I live with this damage daily – the risk is very real. SCAD patients do not fit the profile of a heart attack patient. Surround yourself with people who have your back – you can trust them to get you timely medical care should the need arise.”
NS, age 59, Oregon
(1) Laxmi S. Mehta et al. Acute Myocardial Infarction in Women. A Scientific Statement From the American Heart Association.
Q: How has misdiagnosis affected your health?
CAROLYN’S NOTE: I am not a physician so cannot offer an opinion on any medical condition. If you are currently experiencing disturbing symptoms that you believe might be heart-related, seek immediate medical help. DO NOT leave a comment here describing your current symptoms.
- Do you need a translator for unfamiliar cardiac terms? Visit my patient-friendly, jargon-free glossary to look them up.
- When you fear being labelled a “difficult” patient
- When doctors can’t say: “I don’t know”
- A second opinion from Dr. Google
- Hysterical female? Just anxious? Or heart attack?
- Misdiagnosis: is it what doctors think, or HOW they think?
- Misdiagnosis: the perils of “unwarranted certainty”
- Seven ways to misdiagnose a heart attack
- Stupid things that doctors say to heart patients
- Cardiac gender bias: we need less TALK and more WALK
- Unconscious bias: why women don’t get the same care men do
- The sad reality of women’s heart disease hits home
- How can we get heart patients past the E.R. gatekeepers?
- How does it really feel to have a heart attack? Women survivors answer that question