I did have AF despite no one believing me

I was admitted to hospital recently with suspected heart failure.  Whilst in the hospital the cardiologist responded to my concern about that I could feel my heart skipping a beat and then fluttering, that this was just an ectopic beat.  Nothing to worry about.  However, my wonderful GP booked me in to see another cardiologist, who arranged for an 72 hour monitor to be worn.  I could only wear the monitor for a day as I was allergic to the plasters used.  However, the monitor recorded the ectopic beats lasting 13-14 beats plus an atrial run exceeding 30 beats, so I officially have atrial fibrillation and I'm on anticoalugents .  My grouse is why do hospital doctors never take you seriously.  When I was discharged from hospital, a junior doctor wrote on my notes that I was suffering from anxiety!!!  Of course, I wrote to the hospital and complained and have received an apology.  My health has now deteriorated, severe breathlessness, fluid retention, atrial fibrillation and my doctor tells me I, indeed, have heart failure.  I have lost all confidence in hospital doctors preferring, instead, to stick with my own competent GP.

15 Replies

  • Hi Caprice - I'm glad the medical profession have finally realised that you do indeed have a heart problem. I can only guess that perhaps some people exaggerate their symptoms and they have to explore what is really fact. It's annoying not to have been believed isn't it! Also I do wonder as the older we get whether we are not considered quite as important as someone younger.

    I'm so sorry to hear how your health has deteriorated and am pleased to hear you have such a competent GP.

    Wishing you well.


  • You are not alone in despairing about this. I shall never get over a nurse recording that I suffered from lightheadedness. The implications for my driving licence are awful. Yet this was never discussed and remains on my records along with my denials. Then there was the arrogant doctor who insisted that I take aspirin for my AF, and that upset my stomach very badly. It does worry me that there's rubbish recorded that I don't know about.

    Keep a diary in which you record all relevant information.

    You are so lucky to have a good GP.

  • If it could be done in a way that didn't make doctors feel threatened, I would love to see an honest debate about why there is so much distrust between doctors and patients.  I believe that their training in doctor-patient relationships has been given more focus but sometimes it doesn't feel like it.

    We can't always be sure that our comments and opinions are recorded in our notes, especially where the doctor disagrees or diagnoses otherwise, likewise any complaint made or apology given.  

  • I totally agree Mrspat and often find that the worst are the older doctors who seem to have been born without a charisma gland. My old GP who was not from this part of the world misdiagnosed me for ten years before I moved house and doctors. Young(er) lady doctor spotted it on the first visit!  I think we all should be proactive about our health and seek second opinions where appropriate but also note that there seems to be some evidence that ladies get misdiagnosed or ignored more often than men. allegedly because they wear make-up and don't arrive at the doctors looking like death's door.

  • I was admitted to hospital 2years ago with congestive heart failure and now have AF but with care and medication my enlarged heart has improved although AF has got worse and I am waiting an ablation

  • Doctors are learning to listen to patients but it's slow

    I had a brilliant a and e doc but helped by being with my daughter who is a doc.  It's a lottery like many professions and situations   Obviously it shouldn't be. Patients know more about themselves than anyone else. 

  • "When I was discharged from hospital, a junior doctor wrote on my notes that I was suffering from anxiety!!! "

    In June 2014 I was sent home from A&E with atrial flutter because the doctors thought I was just panicking, and I had to call out another ambulance later in the day. It was one of the subjects I complained about, but they arrogantly stuck to their guns and insisted that two consultants have confirmed that my ECG was NSR on discharge. So I asked a private EP for a second opinion, and surprise surprise, he confirmed atrial flutter. I'm still waiting for the NHS to respond to his letter........

  • I say again, one must be one's own doctor.  The medical specialists can render opinions but each of us must make his or her own decisions.

    My GP told me one does not get diarrhea from giardia - contradicting an established medical fact.

    The same GP told me not to get a PSA test and certainly not to take a supplement (Cernitin) that was supported by what he called "garbage science."  Well, I got the PSA test, took the supplement, and a year later the PSA was 14% lower.  Yup, my prostate shrank despite his conventional advice.

    My neurologist says I have a drug-induced autoimmune disorder (caused by flecainide).  He refuses to consider fMRI or any other diagnostic avenue besides standard MRI and some blood tests.  I'm now learning about brain inflammation and a few supplements that might reduce it.

    So much for doctors.

  • Can you please tell us more about your drug induced autoimmune disorder? 

    How do you know it was caused by Flecainide (which many of us take)?

  • I posted the story last fall, and nothing has changed since then.


  • One GP told me that it was an old wives tale that you can pick up verrucas at a swimming pool.

    Another told me that blood pressure goes down not up whilst exercising.

    Another told me to see an optician about my ocular migraines. As the optician pointed out, OM is a brain problem not an eye problem.

    Another offered me meds for the headaches when I told her I get ocular migraines. There are no headaches with OM.

    Another told me that passing blood is a symptom of IBS, not bowel cancer.

    Another told me that overtraining syndrome goes away with rest. According to Prof. Meeusen at the European College of Sports Science, the defining characteristic of OTS is that it doesn't go away when you rest.

    Another told me that it's possible to exercise continuously above your anaerobic threshold without lactate build up.

    Another told me that I would have been unconscious if my HR had been over 200bpm.

    My EP told me that AF is harmless when he stopped my medication.

    I have no faith in them at all. None.

  • Wow ... the scope of ignorance is amazing.  What's worse, is that making these kinds of statements reveals unwarranted confidence rather than curiosity.  Someone once said that the first step toward learning is recognition of one's own ignorance.  I suppose that being in the role of expert insulates one from one's own ignorance.

  • I was first diagnosed with AF in Jan 214, had been to the gp surgery four time im 2 weeks compaining of fluid retention ( I had put in 2 stone in those 2 weeks an high HR and breating problems , they seem to think I female probs re the other sympoms or was worring about the cancer results.  This all started in October 2013 with fluid retention, they thought it was womens problems!  Has scans and mri scan and nothing found.  Then found lump in breast, that then took priority.

    Saw the breast cancer consultant for my results on the 9th jan and the answer was yes I did have.   He asked about my health as he wanted to book me for an op, then looked at me as sai you do not lookwell.   I explained all the problems.   He offered to examine me and he did.   He was really cross, it said it acites and should be controlled medically.   He wrote a very strong email to my GP saying get something sorted today and me to ring the surgery when I got back as it would be there by the time I got home.   My gp arranged for me to into womens unit at 8 am the next morning to the emegency gyni and see a doctor she got a favour from.   

    Had all the gyni test again, came back negative but she could see I was unwell.   She rang my breast cancer consultant and he said admit me to the womens ward this was not the usual process but as I would be a patient soon, So I was admmited.

    Had tests all afternoon was put on flursimide drip and catheter fitted.  Next morning I was addmitted to Cariac ward and into a special care room.  I was in hospitol for 12 days.   Had loads of test, xrays, scans, echo etc.   By the way my hr was 160/200 for many days.  I think I saw the consultant only once with his entourage and he told me I had AF .   He explained so quickly that I could not take it all in, told me I woul be on drugs and that was it.   When I saw my discharge papers I noted first on the list was heart failure the reason for admittance.  I felt that he talked a me and I was not given time to ask questions, at that time I had never heard of af so would not have known what to ask anyway.     

    All my outpatient appointments have been with the arrythmia nurse (not seen a cardiac consultant at all) and a community heart failure nurse ( she has been vey good).

    In may 2015 I was addmitted to A & E after agin retaining fluid and fluid on my lungs.  GP said at firs it was a chest infection, antibiotics given went back a week later and he sent to A & E.     Overheard conversation between ttwo doctors, saying why did GP not send me for a xray when I first saw him knowing my background.  Tests show that I did not have a chest infection.     Saw consultant a few days later and he wanted to increase my biso dose to 7.5.   He was also displeased that I had stopped takin digoxin, but it did not agree with and my doctor wanted me off.   I was also taking Ramipril as well.   I explained I had several times taked the extra biso and it made me very poorly, I seem to be able to tolerate 5mg but no more.   He then left.  A few hours later his young lady sidekick came back and said I had to either take the extra biso or the lower biso and the digoxin.    She said this is how the hospitol treat AF.

    I said well there are other drugs can we consider some of them.  Her reply, but it would mean that I have to go and find a consulant who may do this.   So I said find go find one.  

    A few hours a new consultant came to see me (no one I had seen before, I think he may have been a visiting EP from Papworth) and prescribed me Diltiazem, still had to take the 5 mg of biso but this has seemed to work.

    Also when you show some knowledge of AF they seem to recoil from you do not want to hear what you have to say.   Another they never warn you or tell you of the side effects of these drugs, it's if you take these all will be well.   But I do feel that too many doctors do not listen to you and do not like it if you appear to know a lot about AF.  The look on their face is I am the doctor I tell you what to do.

    Sorry for long rant.

  • "Also when you show some knowledge of AF they seem to recoil from you do not want to hear what you have to say."

    A comment made by my advocate as she was helping me prepare my complaint letter:

    "They don't like it because you're intelligent."

  • Wow, you've been through the wringer.  I guess though that many of those on this forum have been through similar.  It's such a shame that doctors don't actually talk to each other.  They might write a referral, but don't seem to actually talk and discuss options for your health.  I love the looks I get when I mention Dr Google.  Maybe if doctors worked out that people go to Google because they can't get current info from the medicos and that they want to be informed and assist in their own health crisis. 

    PS ... feel free to rant.

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