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?
NOTE FROM CAROLYN: I wrote more about both misdiagnosis and underdiagnosis in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from Johns Hopkins University Press (use their code HTWN to save 20% off the list price when you order).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.
AND ANOTHER NOTE: I am not a physician so cannot advise you at all about your medical condition. If you are currently experiencing alarming symptoms, please see a physician.
- Do you need a translator for unfamiliar cardiac terms? Visit my free, patient-friendly, no-jargon 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
16 thoughts on “Women’s heart disease: is it underdiagnosed, or misdiagnosed?”
Finally, someone who believes these feelings and symptoms are real. In July 2015 at the age of 56 my heart rate suddenly elevated like it had in the past 20 or so years. The only difference between this time and past times were the other episodes would happen 2-3 times a year and last 15-30 minutes. In 2004 because of these episodes, my Dr diagnosed me with Generalized Anxiety Disorder (GAD) and put me on Lexapro, an SSRI.
But in the July episode I went 4 days until I realized something else was going on and went to the ER. While there someone looked at the ECG monitor and just blurted out..”Oh, you just have A-fib.”
I know I must have had a very puzzled look on my face because I had never heard of atrial fibrillation… My life since that day has consisted of nearly a dozen hospital stays, trying almost as many drugs, and 3 cardiac ablation procedures. I just had the 4th one, an AV node ablation/pacemaker procedure just a couple of weeks ago when I had decided the emotional and physical toll was enough. I am still working on getting the pacemaker settings fitted for my lifestyle.
Back to the GAD diagnosis… I told my Dr and others that I believe with all my being that I never did have anxiety or need to be put on that anti-depressant ….All those episodes were the beginnings of my A-fib. So in June 2017 I decided to come off the Lexapro after 13 years…
Dr took me off it way too fast and then I had to deal with the horrible effects of withdrawal. Those withdrawal symptoms are almost gone, but now I am learning how to live with my pacemaker permanently.
If only Dr’s would just listen it would save everyone from a lot of unnecessary heartache and trouble.
You’ve been on a roller coaster for many years, Cheryl. And once you have “anxiety” written anywhere on your chart, it can be hellish to try to get that expunged! Good luck with managing your symptoms and your pacemaker.
As an AFib patient you might also be interested in checking out Dr. John Mandrola’s blog (he’s an electrophysiologist who has also been diagnosed himself with AFib – my favourite kind of cardiologist!) https://www.drjohnm.org/atrial-fib/
Thank you so much for bringing awareness to being underdiagnosed and misdiagnosed. I learned that I should always make sure I trust my doctor, and make sure she actually cares if something is wrong.
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Thanks Anna Marie – it sounds like a basic truism (that doctors should be trustworthy and should care if something is wrong with their patients). I believe this is mostly true, except for when it’s not…
I have heart disease. Bypass. And MVD spasms. Currently my thyroid has become unstable and is causing angina. Several times in the last two years I have had episodes of MVD spasms and ended up in the Er because of such discomfort. I can’t even get them to give me any meds now. I have to beg for nitro or morphine.
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Good grief… I’m not a physician so cannot comment specifically on your experience, Jennifer, but I can say generally that women who have been diagnosed with a coronary spasm disorder who have to repeatedly go to the ER for spasm relief are not having their spasm disorder well-managed. See your cardiologist to ask for a thorough meds review. (For example, we know that taking beta blockers can sometimes induce angina pain). You should never have to “beg for nitro” – although nitrates can cause side effects like fainting if you’re hypothyroid so caution is required. Again, you need a comprehensive meds review, right away, so you don’t have to rely on ER visits for basic symptom management. Good luck to you…
Very enlightening….I could identify so easily with these women. How many WOMEN’S heart health centers are there in the U.S. and where are they? Would like to support them.
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Thanks for your comment, Judy. There are in fact a growing number of women’s heart centres, thank goodness (I wrote about them here) but I also like the response from cardiologist Dr. Sharonne Hayes (founder of the Mayo Women’s Heart Clinic) to a reporter during the 10th anniversary of that Clinic. The reporter asked her what her goals were for the next 10 years of the Women’s Heart Clinic.
She replied that she really hoped there wouldn’t even need to be any women’s heart clinics 10 years down the road, because by then all women would be diagosed and treated with the same accuracy afforded to male heart patients. That’s a good goal to shoot for, isn’t it? – that doctors, no matter WHERE they are, will no longer be underdiagnosing (and then undertreating) women heart patients compared to our male counterparts.
I entered the hospital with severe chest pain and shortness of breath and shortly after the pain went away. They admitted me for 24 hour observation. So far so good. The first 2 troponin tests were negative, but the next 2 were up so they did an angiogram. They pronounced me free and clear and sent me home.
Five months later I had the widowmaker heart attack in the LAD artery with 100% blockage!! They still see no reason for the blood clot that caused it but I now have a stent. A 30-day monitor showed no arrhythmia. All my tests are normal and no more pain or issues that I know of again!!
It makes me very nervous that it will happen again and this time will kill me…
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Hello Chris – It’s common, especially in the early days/weeks following a heart attack, to be convinced that death is imminent. Australian cardiac psychologist Len Gould (himself a veteran of triple bypass surgery) likes to say that before a heart attack, every chest pain is just indigestion, but afterwards, every chest pain is definitely another heart attack!
Try to simply enjoy your absence of symptoms. A good day is, after all, a good day, but can be made miserable by needless worry. And pat your brave little heart every once in a while to say “Thank you for helping me survive that heart attack!”
The question arises: even if the cardiologists have found something, and given you a diagnosis, how do you know it’s the right one? After three catheterizations in two weeks, followed, on the third time, by two more stents (none the first time, one the second) and a balloon angioplasty – they finally found a 95% blockage on the left circumflex artery – and the chest pain mule-kick stopped. The nuclear stress test was interpreted as being in the wrong area (first stent – woke up with same chest pain).
And now, I wonder if the occasional twinges mean anything, or the occasional rapid heart rate (which seems to be associated with digestion).
How do you KNOW?
Hi Alicia – It’s not always the size of the coronary artery blockage that’s the greatest risk, but the stability of that plaque that is most important. As Dr Steven Nissen of the Cleveland Clinic once wrote: “Only one in seven heart attacks is caused by a blockage of more than 70 percent. It’s the classic tip of the iceberg problem.” This may help to explain how soft vulnerable unstable plaque can rupture and suddenly become a 95% blockage that may not have been visible days earlier. Some studies point to inflammation as the culprit, which can lead to the development of this unstable vulnerable plaque. Here’s more from the Texas Heart Institute about vulnerable plaque.
The answer to “How do you know?” is simply: “You don’t.” You just have to put one foot in front of the other and try not to live your life focused on occasional twinges that are very common after stents. If you start experiencing any more of those “mule kicks”, that’s the time to seek help.
The chest pain did not go away until the third time; but I was in danger of not taking the pain as cardiac, because they kept telling me that I would be able to discount anything cardiac if they didn’t find the cause. Before catheterizations one and two.
I think I was lucky; I doubt very much the blockage suddenly happened – the pain didn’t change in any way – but they finally found it. Or should I say, THEY were lucky. I kept telling my husband to insist on an independent autopsy should anything happen.
I can’t get my head around the bumbling over two weeks.
I’ll just have to accept the luck – I’ll probably never know for sure – but I hope THEY change their patterns and methods; I hope THEY learned something.
We are moving to a retirement community in the near future; there will be a change in cardiologists involved with a huge change in location. I’ll probably survive until then – and will take all those records with me, and pay attention to any other symptoms.
There’s always the problem of becoming hypervigilant – and ruining the rest of your life. Sigh.
I was diagnosed with anxiety and panic disorder for 8 years. I was told my ‘heart symptoms’ where psychological and my blackouts where due to panic attacks. I became agoraphobic and didn’t leave the house from the age of 19 until I was finally diagnosed when I was 25 and the reason for diagnoses?? My mum suddenly passed away of a heart condition, so I took my notes to London where I was told that they cannot understand how I am still standing as my ECGs were far worse than my mother’s ever where and she is now dead!!
My local NHS still wouldn’t listen and said they hadn’t seen anything so wouldn’t fit the ICD on recommendation. 5 years, later my brother died of the same thing and finally they listened and fit my ICD. It later turned out I have Long QT Syndrome, coronary artery spasms and MVD (coronary microvascular disease) which had been rife in my family, killing at least 4 others before they listened to me.
I think as women, everything gets out down to hormones or anxiety which is lethal!!
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Oh, Kerry. My condolences to you on the tragic sudden deaths of your mum and your brother. How awful that you had to wait years before your symptoms were appropriately recognized. Sadly, once a person has the word “anxiety” on her chart, it can become a real challenge to convince health care providers to consider further diagnoses. But in your case, you had abnormal ECGs showing Long QT signs that were ignored!
I think Kerry should make herself aware of Hypertrophic Cardiomyopathy. We battle misdiagnoses, then much mistreatment often.
Thank you for this blog Carolyn. Mayo has a wonderful HCM Clinic, as does Toronto. You may want to check it out. I am still being mistreated as are so many around the world.