“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).

   “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).


  “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)

  “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).
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.”



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


See also:



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

  1. I was going to another Dr when I was informed that my husband’s insurance could not carry me any longer if my job offered it. So I switched Dr’s that would take mine.

    In the change, over the many years I went to her, not one test was offered but a colostomy. Not one. I was having symptoms that needed to be checked out.

    So about 2 months ago, I got in to tell her I am hurting in my side and upper right back, and food is making me sick; she sends me to a gall bladder Dr. Sure enough it needed to be removed.

    During this talk I also told her about chest pains that felt like acid reflex and that my left arm would tingle or feel numb.

    Seeing a pattern here? Well she never did. 3 weeks ago I underwent open heart surgery for blockages and a heart attack; on the 5th I went through a nightmare of surgery.

    I am so angry. Why did none of this click with her? Why do I feel that if they had been running tests all along, things might have got caught much sooner?

    Liked by 1 person

    1. Good grief, Jackie! That’s a long time to be experiencing distressing symptoms. It’s hard to tell from your comment if the colostomy and gallbladder surgery were at all connected to your cardiac diagnosis. I’m not a physician of course, but I’m guessing NO – that if they did these two procedures, then they were also necessary. It’s possible to have both heart disease AND another serious condition at the same time.

      It’s the cardiac symptoms I’m most interested in. This is why patients must be persistent. Yours is a good reminder to keep going back if symptoms that could be cardiac (e.g. chest and arm pain) continue or worsen! As I like to tell my Heart-Smart Women audiences now: “You know your body! You KNOW when something is just not right!”

      Hope you’re doing better day by day now…


  2. I have had these problems all my life. Racing heart, sharp pains in left chest, nearly blacking out, arrhythmias, palpatations etc… I was misdiagnosed with Mitral Valve Prolapse and was on drugs for 10 years. I know now that I was just a nervous kid and the caffeine didn’t help me either. I would NEVER coax my doctors into the interventions that you have undergone. I know my symptoms have everything to do with my nerves. I am not offended by any doctor who tells me that. I am neurotic and would rather have that than give my consent for such desperate measures and surgeries.


  3. most people are lucky to have a doctor that does not overdiagnose them. More people are being harmed after being misdiagnosed with a heart attack than are being helped. View Dr. Gilbert Welch talks


  4. I went to er three times over a three month period with chest pain. Every time I was told I was too young at 36 for it to be my heart. I was given anxiety meds and told to come back if it got worse.

    I was hit with the same terrible pain in my right arm and started to sweat, heart racing, also pressure in my chest like a squeezing. My mom and husband called 911. This time I was told I had anxiety and needed a class to learn how to handle my diabetes. 12 hrs later my husband drove me back in with me screaming in pain. The Dr said it could be a blood clot but I know its not your heart. You are too young and no history of heart issues.

    Just as a precaution I got an EKG. Then immediately rushed to the cath lab. I was in tne middle of the widow maker heart attack. I had my LAD stented and woke up in disbelief. I had been told over and over it was in my head.

    Then I left hospital, went home to recover telling the doctor I was having chest pain. The doctor said it was normal after stenting. Well I do have anxiety and Thank the good Lord. I went to a different hospital and they found 20 small clots in my lungs and one majorly big one.

    How did the hospital miss this 4 times visiting the ER, and having a heart procedures as serious as a stent? Please if any woman, anyone, no matter what age, has chest pain or discomfort, just go. Listen to your intuition, to the small voice.

    I thank God for my anxiety or I wouldn’t be alive.


    1. Hi Christine – I’m not a physician so cannot comment on your specific case. I can say generally that you might want to start keeping a symptom journal (date, time of day, how long, how severe, what were you doing/eating/feeling in the hours leading up to the onset of symptoms?) Often a pattern can emerge that can help physicians make a diagnosis. Right now, you don’t know if what you’re experiencing is heart-related or not. So much of medicine is simply ruling out what the problem is not. Best of luck to you in solving the mystery. If your symptoms return or get worse, seek a second opinion.


  5. Hi, I think the similarity between this story and my own are remarkable and it makes me wonder if it has more to do with being a paramedic and knowing what you were talking about when describing things to your doctors, or if doctors (I’m generalizing because my best friend is a doctor) just don’t like paramedics, or feel threatened talking to someone who they can’t lie as easily to.

    I’m a male and was a paramedic until I was targeted and fired two years later, for asking my company for a second healthcare option, aside from Kaiser.

    My heart problems began about 14-15 years ago. I am diagnosed with bicuspid Aortic valve and MILD Regurgitation, but was told by a very thorough doctor I was paying out of pocket to see that I needed my Aortic valve replaced 6 years ago. My ejection fraction being the only thing keeping me from any further testing and my medi-cal doctors now saying I’m an asymptomatic patient, so I need to, “wait until this gets much worse.” As the current cardiologists tell me now (at least they aren’t calling me an anxiety patient anymore, which started as soon as I lost my job and insurance). While my records were promptly “lost” at the first doctor’s office I went to on medi-cal. I had done my own EKG, while still working and having chest pains, which had obvious ST-elevation and was interpreted as ***Acute MI Suspected***.

    Kaiser dismissed it because I forgot to enter my name on it and waited to go in, until I was done with my shift.

    I am nearly certain I have an aneurysm somewhere, not just because the only thorough doctor I’ve ever seen told me that he thought one of “(my) carotid arteries was dissecting just before I lost my job and he coded and had a CABG.”

    My question is simply, who did you finally see, to get things taken care of? Do you have any recommendations to any cardiologists who might work with a medi-cal patient and realize that my symptoms and the obvious signs of later stages of Regurgitation are happening despite my ejection fraction being maintained by my ever remodeling heart. I have at least 5 later stage signs of regurgitation, that all they have to do is a decent PE to confirm. Two had already been confirmed, De Mussett’s and Corrigans pulse, as well as basically another that was seen by angiogram of my eye, showing retrograde flow and pointing to my heart or carotid(s).

    I’m sorry for all you went through getting your diagnosis and eventual AVR. I hope you are doing better since then. Any help would be greatly appreciated.


    1. Hello Scott – sorry you’ve been experiencing such complex and distressing symptoms. I’m not a physician (or a paramedic!) so can’t offer an informed opinion on your case, especially since I’m in Canada so am not competent to advise on U.S. healthcare systems). I’m confused, also, by some of the descriptions listed (e.g. when your doc said you’d ‘coded and had a CABG’ – which you didn’t mention so I’m unsure if that happened or not). Your GP is the ‘quarterback’ of your medical team and should be able to review your case and refer you to somebody who can help. Best of luck to you…


  6. My initial misdiagnosis was asthma – for my shortness of breath. Then NARCOLEPSY for my fatigue!! Then anxiety for my racing heart and hands and feet that would fall asleep, seize up into little fists and refuse to move when I told them to.

    I was finally diagnosed with moderate mitral valve regurgitation and mild mitral valve prolapse, but I still haven’t had a doctor call or explain to me what that means or provide any treatment options. On to doctor number 5 in two days.


    1. Good Lord, Holli! Are they picking names of potential diagnoses out of a paper bag? I’m not a physician so can’t comment on your specific situation, but I can tell you generally that how mitral valve regurgitation is treated can depend on if you have symptoms (many people living with mild-moderate MR have no symptoms) or complications, and how severe the regurgitation is – all things you need to understand clearly from your physician after your diagnosis. Do some homework (“Up To Date” is a good place to start). Please do not wait for a doctor to call you to explain your options following any diagnosis. Best of luck with Dr. #Five…


  7. I recently found this blog. Thank you for the great information. I am happy to see the positive outcomes that readers have experienced. Unfortunately my story doesn’t end so happily.

    Just over five weeks ago, on Wednesday August 26th my 44 year old sister Amy started experiencing severe chest pain with tingling in her arms and legs and seeing spots. She tried to rest for a few hours to see if it would go away but it didn’t so she called her husband and drove herself to the hospital, where he met her. They fairly quickly hooked her up to the EKG monitor and reassured her that she was not having a heart attack as it looked fine and her vitals were fine. They did a blood test which apparently also seemed normal. The hospital protocol is to keep anyone with chest pain for observation for at least six hours which they did, however during this time she was mostly left alone, throwing up, freezing cold and with no medications to ease her pain which was not getting better.

    Her husband had not been able to stay with her as he had to finish up some work, get their kids from school and get them dinner and settled for the evening. When he returned to the hospital, a nurse had finally responded to the call button and they were getting Amy some medications to help ease the pain and preparing her for discharge. Her diagnosis was severe reflux and she was sent home with some Aleve.

    The next day, Thursday, she went through her day, worked on her home business, went to her kids’ games. The pain was better but not completely gone (she said it was a 3 down from a 10). That night it started getting worse again. She couldn’t sleep, went out to the living room to try to get more comfortable. When her husband got up early Friday she was on the couch with a bag of ice on her chest and he couldn’t wake her up. He did CPR and called 911 but she passed away.

    That was five weeks ago today. She left behind four daughters age nine to sixteen. We still don’t know if the cause was a heart attack or if it was something else. An autopsy has been done but we don’t have the results yet. I have been searching the internet trying to figure out what her symptoms could mean besides heart attack (since she was so positively told it was not one) and realized when I found this blog that it could be a heart attack after all. I know she did not return to the hospital the second night because she was embarrassed and I wish she had known to ask more questions and be more assertive. Too often we assume the doctors are infallible and don’t push back. But she knew this was not normal for her or she never would have gone to the ER the first time.

    I am not sure why I felt the need to write this. I guess I just needed to communicate with people who could relate to our story. Thank you.

    Liked by 1 person

    1. Oh, Robin. I’m so sorry to learn about the loss of your sister, especially at such a young age. You and your family must still be in a state of shock after this awful tragedy. I hope my readers who see your words will remember the important lesson you’re sharing with us about her story, which is: “You know your body. You KNOW when something is not right!” – and not hesitate to seek immediate medical help for distressing symptoms like Amy’s. My sincere condolences to you and your family…


  8. I know this is specifically about women, but it happened to my husband. He was misdiagnosed by 3 doctors in one week with panic/anxiety. He was told to learn how to breathe and was given a beta blocker to calm the “panic”. When he finally went to the ER because he decided he was dying of panic, they found his LAD was 100% closed and had an emergency stent placed. They have no idea how he survived with it closed completely for so long.

    Liked by 1 person

    1. Thanks for sharing your husband’s story here, Amy – an important example of how a cardiac event can be mistaken for something else, over and over! I hope your hubby’s doing much better now.

      If that first doctor wrote the words “panic” or “anxiety” on your husband’s medical records, you can be sure that the misdiagnosis followed him to the other two doctors as well. You might want to get copies of those charts and get that misdiagnosis corrected – as this reader misdiagnosed as an “anxious female” did.


  9. My misdiagnosis was “anxiety” in the ER on March 25th, and was told several times it wasn’t a heart event. It took them two days to determine that it was severe angina. I was admitted and after several attacks was moved to Cardiac ICU. I had CABGx1 (bypass surgery) on the fully blocked “widow maker” on March 30th.

    The cardiac unit was awesome but ER was awful and the hospital is a Level 1 Trauma center. Something has to change.

    Liked by 1 person

  10. I think it’s a terrible shame what has happened to these ladies with all these misdiagnoses. Unfortunately some of the above physicians acted extremely unprofessional and perhaps should go back to medical school for additional training.

    I had a heart attack a little over a year ago (47 yrs old). I presented with arm pain, shoulder and back pain, nausea/vomiting, sweating and was treated extremely well at the emergency department (Lahey Medical Clinic, Burlington, Massachusetts). I was in great shape (still am) and cholesterol panel and liver panel all normal, no past history. They ran all the right tests (echo, CK-MB, troponin) and all was confirmed. I see I was very lucky to be treated where I was treated. I wish this could be the same for all.

    Liked by 1 person

  11. Unbelievable. This wasn’t a single, egregious lapse in professional care, but rather a complete and systemic failure that reeks of arrogance, sexism, and gross incompetence.

    Reading your story, Carolyn, I could just see them rolling their collective eyes.

    Liked by 1 person

    1. Thanks Denise! I’ve been writing about misdiagnoses for years. At first, it was too easy to make sweeping generalizations (mostly things like: “He’s an idiot!”) but by now I’m actually less likely to blame our misdiagnoses on arrogance, sexism or gross incompetence. There are many good people practicing medicine who work very hard to get it right. Instead, I’m trying to (charitably, I admit) point at other systemic decision-making errors at play – what Dr. Jerome Groopman (author of the terrific book How Doctors Think) calls unwarranted clinical certainty e.g:

      “Specialists in particular, are known to demonstrate unwarranted clinical certainty. They have trained for so long that they begin too easily to rely on their vast knowledge and overlook the variability in human biology.

      “Specialists are susceptible to diagnosis momentum: once an authoritative senior physician has fixed a label to the problem, it usually stays firmly attached because the specialist is usually right.”

      The problem starts way, way back in med school and will not be “fixed” until somebody, somewhere gets serious about what Dr. Pat Croskerry calls our “staggering” diagnostic failure rates in modern hospitals.

      NOTE: I am pretty sure, however, my charitable perspective does not extend to those docs who actually say (unhelpful) things out loud to heart patients like “Have a baby!” or “Have more sex!” (See reader comments below…)


    2. This is not a sexist misdiagnosis, it happens to men all the time, also. Statistics show men have more heart problems, so women don’t get listened to as well, but men are constantly ignored also. I’ve been living proof of that as I have been suffering with this congenital heart defect that is known to them, they just don’t believe I’m symptomatic from it, while I have every symptom on an almost daily basis.

      Been kicked out of the ER with my own EKG, I was a medic, showing obvious heart attack indicators. That was 6 years ago and I still have never had an angiogram, or cardiac enzymes, despite that having been done on every patient I ever brought to a hospital with the same or even less serious looking EKG. It has more to do with money and insurance companies, not doctors and patients, than men vs women.


      1. You are correct, Scott. Misdiagnosis does indeed happen to men, too. But lots of compelling research over the past decade continues to confirm that women are far more likely to be under-diagnosed compared to our male counterparts, and under-treated even when appropriately diagnosed. Other factors do impact misdiagnoses (including money, insurance companies, race, age, social determinants of health, etc but cardiac misdiagnosis is clearly a gender issue.


  12. I once asked an ER doctor why he thought so many women with heart disease were misdiagnosed in the ER.

    I did not expect the answer. He stated that hundreds of patients come to the ER every day thinking that they have a heart problem, and yet the vast majority of them do NOT actually have a heart issue. If extensive and expensive testing were done on each and every one of them, it would exhaust and overload the system. Doctors have to make the best diagnosis using the basic approved testing and given the symptoms presented.

    Do you think this is really the situation?

    Liked by 1 person

    1. Sue, I think this IS the situation for many. I wrote about a study recently that suggested chest pain is the main reason that over 6 million people rush to the Emergency Departments of North American hospitals each year. These visits also represent a whopping 25% of all hospital admissions – yet 85% of these admissions do NOT turn out to be heart-related at all.

      So there is that. BUT there’s another issue, also well-documented, clearly at play here when female patients are the ones coming forward, which is a pervasive gender bias in which women are in fact under-diagnosed and under-treated in comparison with our male counterparts

      But the reality is that had my own textbook symptoms (central chest pain, nausea, sweating and pain radiating down my left arm) been observed in a male patient, I have no doubt whatsoever that a man with my symptoms would NOT have been sent home with a pat on the head as I was, but would have been admitted for 12-hour observation as cardiac treatment protocol currently dictates.


  13. Go home and have SEX!!!!!!!!! Does anyone know in what medical text book the treatment protocol for that is outlined? Masters & Johnson?

    I thought it was insulting enough when I was handed a psychiatric referral and told to go home, live my life and take up something like kick-boxing . . . but SEX!!!!!!? Now, maybe I have heard everything . . .

    Liked by 1 person

    1. Yes, Judy-Judith. Perhaps Masters & Johnson were unaware that having (more) sex can magically cure aortic valve damage. . . It’s right up there with kick-boxing magic.

      Getting that advice (with a straight face, I’m guessing) may be more tragically (comically?) common than you might think, in fact. In an earlier post on misdiagnoses, I quoted a heart patient who was told this by her cardiologist:

      “Honey, you have just moved away for the first time. You are probably lonely for your mother. I would go and have a baby if I were you!” – all without ever putting a stethoscope to her chest (aortic and mitral valve replacement, pacemaker).

      See? More sex advice…

      Liked by 1 person

    2. It isn’t just women being made fun of, although I agree, it isn’t ok no matter who it happens to. I have been made fun of for my heart problem and told that, “my head would explode, if what (I) was saying was true. My doctor friend in the room had just been made fun of by this doctor also, he was a male also. I’m not saying women don’t have it happen more, I don’t know. It isn’t a gender issue though, it is a monetary issue. If you have money, you are worth helping, if you don’t have money, you are not worth helping. No matter what you did or do for a living, when you get sick, of you don’t have good insurance, you will not be listened to as closely, tested as thoroughly, or treated like a decent human being, in most cases.


      1. Scott, nobody is implying that women are the only ones whose symptoms are misdiagnosed or disrespected or minimized. It feels terrible to encounter any of that, ever. I agree that these experiences may also be driven by monetary issues, but they are known to be a significantly more common gender issue for women compared to our male counterparts. I’m not making this stuff up, honest…


  14. It really is a nightmare. Here’s my story. My heart travails began in my late 30s. The first time I ended up in the ER with severe MI-like pain, the notes read “possible anxiety” and the MD told me that his elderly mother in law could feel every swallow of water, every bit of food as it travelled down. Some people are just super-feelers, he said. I was released. After consulting with a gastro (I was referred for reflux), I ended up with a gall bladder removal (stones), upper and lower endoscopy, etc. It did help but something was still wrong. Click, next picture.

    From 40 onward, I had constant recurrent pain around my heart, back, etc., complained for 2 years or so to GP. Sent to cardiologist for suspected Mitral Valve, etc. Cleared of heart issues. Two more internists, two more cardiologists, one a well respected female who sent me for a calcium scan. Zero calcium, more GI investigation round 2, continuing pain. On PPI (reflux) meds for a number of years. Still pain.

    By this time, was in a HMO where my husband worked. The female internist would look at me with “this woman is a nut” look when I would break down in tears. She was much nicer when I brought my husband to the appointment with me. There were probably 5 ER visits over the years, all negative for signs.

    I realized that if we stayed in the HMO, I might die since they thought it was anxiety. I had been diagnosed with a mild to moderate sleep disorder, but they didn’t think it was super important to successfully establish the CPAP. I got new Insurance, an expensive PPO that costs us $19,000 a year before one dollar of reimbursement. Around this time, 2 female cousins in their 40s died suddenly of heart issues. My Dad had CHF for a decade or two. I was now 52.

    In 2005, I saw a newspaper ad about a Stanford talk about unexplained chest pain in women. I attended this and knew immediately I had to see this MD. I called and had an appointment in a couple of days. Two days later, I was having a provocative angiogram (at last!) and was diagnosed with mild to moderate endothelial dysfunction – later, with LP(a), a genetic lipid glitch with higher risk of MI/stroke. Fortunately, I have not had an MI or stroke – though for years, I have felt as though I was in the middle of one – all day and a good portion of the night.

    The 15 years or so without diagnosis, being minimized, patronized and disbelieved were hideous. How would you feel if you felt EVERY DAY, EVERY HOUR, “is this IT? Do I die today?”

    25% of my life was lost, stolen and missing. Science, research and society owes 50% of the population more than second class citizenship.

    It has to STOP. NOW.

    PS. I am now 60 and have a much better quality of life thanks to treatment and additional modalities I have found NOT through the medical system. I am happy to be alive and have a moderately good quality of life, but grieve the pain and lost years. It cost me a fortune in my retirement security, and still does.

    Liked by 1 person

    1. Oh, Mary. What a hideous experience indeed – being “minimized, patronized and disbelieved” for 15 frickety frackin’ years?!?! That is soul-destroying.

      I’d like to think that these days women like you presenting with textbook cardiac symptoms but “normal” routine tests would now be automatically referred for more specific testing (for microvascular, vasospasm, endothelial dysfunction disorders) because we know now that these conditions are more frequently seen in women yet do not show up using conventional diagnostics. I’d LIKE to think that, but almost every day I hear reports like yours – how can it possibly be that these misdiagnoses are still happening in 2015? You are 100% correct – this kind of misdiagnosis has to STOP. NOW.

      Thank you so much for sharing your story here.


  15. Hi Carolyn,
    I realize that no tests are perfect, but am wondering what tests are the best for ruling out cardiac disease?

    I’m 45 years old and have been having chest pain/heaviness off and on (even at rest), palps (I gave up all caffeine and diet drinks)… initial tests have been negative. My father had a heart attack and quadruple bypass at 55.

    I also understand that there might be a link to peri-menopause?



    Liked by 1 person

  16. Yes – prior to my Spontaneous Coronary Artery Dissection, a young doctor in A&E (Emergency) was trying to convince me I had indigestion!

    My story here.

    Liked by 1 person

    1. Your story is absolutely gripping, flowerpowerlife! A rather rude young doctor was advising me it was probably indigestion and that I should sleep with raised pillows! Too bad raised pillows have not yet been scientifically proven to stop heart attack . . . I think your late mum (a cardiac nurse for 40 years) was looking out for you that day!


  17. I too was misdiagnosed with acid reflux on Christmas morning last year. I had all of the signs and even an abnormal EKG. As a result of this misdiagnosis, at 34, I now have to have a defibrillator put in tomorrow. I am pissed off, sad, and more pissed off. While I am thankful to be alive, this common mistake has now affected the rest of my life.

    Liked by 1 person

    1. So sorry – and also pissed off! – to hear this, Kimberly. I simply cannot believe that ER docs would send a male patient home with an acid reflux misdiagnosis if he were presenting with “all of the signs and even an abnormal EKG”. It just would not happen.

      Best of luck to you tomorrow…


  18. I am curious about something. Do the misdiagnosing doctors ever find out about their mistakes?

    I too have experienced these dismissive, flawed responses. But do they ever find out? Is there any sort of consequence? Do male patients respond to misdiagnoses differently than females? And trust me, I have plenty of experience with dismissive doctors. I think some doctors leap to the first and most likely diagnosis that might fit instead of considering all possibilities and then ruling out what doesn’t fit.

    Helen Akinc

    “Be like a flower and turn your face to the sun.” ~ Kahlil Gibran

    Liked by 1 person

    1. Hi Helen – such good questions! Emergency physician Dr. Brian Goldman once said that the worst thing he and his colleagues can possibly hear is the question: “Remember that patient you sent home the other night?” – because it usually means their patient had to return to Emerg because they’d misdiagnosed the problem the first time. Following up on misdiagnoses would be an effective teaching tool, but I’m guessing there are few if any official follow-up policies simply due to the hectic pace of the work.* There are many reasons docs pick the diagnosis they do, correct or otherwise, as I’ve written about here and here.
      * UPDATE: The Institute of Medicine’s 2015 report Improving Diagnosis in Healthcare did NOT recommend making it compulsory for all health care professionals to officially report such cases of diagnostic error, explaining that “now is not the right time for mandatory reporting of diagnostic errors.”


      1. Carolyn has read about my issues before, but maybe this little tale will help others…

        I suffered with Atrial Fibrillation for 10 years before the condition got so bad I could almost trigger it at will. During this time, two primary care docs repeatedly told me that my frequent three-day-long bouts of palpitations, periodic light-headedness, and weakness in extremities were due to generalized anxiety disorder. A cardiologist dismissed my initial complaints.

        Several months after the correct diagnosis, I obtained a copy of my charts and found that the first PCP had noted my mythical and magical thinking about my health. No wonder the heart doc’s brush-off. I was able to find out where this PCP was working (as a hospitalist, probably due to poor diagnostic skills) and sent her a letter pointing out the error of her ways. With it, I included her insulting chart notes and my correct diagnosis.

        It’s been six years since I sent that letter and sometimes I consider sending a follow-up, just to reiterate her professional shortcomings.

        Liked by 1 person

        1. Hi Genevieve! There’s another reason you might want to pursue that follow-up contact (and contact with the patient relations office of that hospital) besides pointing out her professional shortcomings – and that is to GET THAT CHART NOTE DELETED from your medical records. That “mythical and magical” comment is not just insulting, it can and will affect future treatment decisions (as demonstrated by that cardiologist’s dismissive non-response to you. I wrote more about this in When Your Doctor Mislabels You as an Anxious Female – in case you missed this, read Kathleen’s story of successfully getting her own mislabel of anxiety removed from her chart after her brain tumour was diagnosed.

          Liked by 1 person

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