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Misdiagnosis

Maglyn profile image
50 Replies

I am reasonably new to this site and have found it incredibly useful and informative. However, I recently received a bombshell, in that I have possibly been misdiagnosed with AF. I visited my GP at the end of September in 2023 with severe palpitations and given three ECGs. Two of these were viewed by a GP in the Practice and one by a Clinician. I was prescribed Abixaban and basically sent away with the proviso of a "follow up" appointment with a cardiologist. I returned to my surgery still with severe palpitations only to be told they could do nothing about them and therefore started treating me for anxiety, which I knew it wasn't.

About a week later I was admitted to hospital with a heart attack having experienced BP of 209/106. I called an ambulance because of this elevated BP and the paramedic who viewed my ECG said "the good news is that you no longer have AF"! I was in hospital for 5 days and treated for a heart attack and I presumed AF. Not once during the four days I was hospitalised did anyone mention AF. I had an angiogram and was diagnosed with Acute Coronary Syndrome. Again, no mention of AF. I have experienced horrendous side effects from the AF medication since October and it has had a detrimental effect on my life and my husband's.

I will cut this story short as it is a long one! I have had no response from my GP, even though they have been advised by the Cardiac Rehabilitation team that I have been suffering serious medication side effects having written to them to this effect on 12 December.

I have now gone down the private cardiologist/electrophysiologist route, against all my principles, and he has informed me that I am a "puzzle". He told me that, as an expert, he was unable to detect AF on any of my ECGs (and there were many), including the ones from my GP surgery. This private cardiologist did actually visit me when I was admitted into A&E and at no time did he mention AF or even a heart attack. Apparently, there was a team of cardiologists studying my results and, reading between the lines, scratching their heads!! He has told me that as my Troponin levels (blood test for suspected heart attacks) were elevated, I had to be admitted, even though the markers were only in the 100s and not the 10000s as they would be for a heart attack. My husband's Troponin levels were in the 1000s when he had his heart attack. This is why there is even a question mark over whether or not I did have a heart attack.

The private cardiologist said that I had definitely had an "event" but cannot put a label on it and this is why he is still monitoring me. He told me that there was a computer error in reading my ECGs. I find it hard to believe that there was a computer error on all of them, as they were all performed in different areas.

I am now considering submitting a complaint about my GP practice, as have had many prior issues with them, as I think there has been a dereliction of duty on their part but not sure where else I can find answers. Have asked the cardiologist if the responsibility lies with the GP practice but he obviously, won't commit to that. The "computer error" of arrhythmia is also mentioned on my discharge papers from hospital.

I am just asking anyone if they have had a similar experience? Would be very grateful for any help. Many thanks in advance.

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Maglyn
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jeanjeannie50 profile image
jeanjeannie50

Hi Maglyn

Let me say that when AF first kicks off it's usually paroxysmal, that word meaning it comes and goes. So unless you are actually having an attack when your ECG is carried out, then the result will be normal and show no evidence of atrial fibrillation. From what I can remember mine started with a few attacks a year and then progressed to every 5-6 weeks. At one point I was told that my rogue beats were coming from an unusual source, perhaps yours were too.

How did you feel when you had your suspected severe AF episodes? Most people feel drained of energy and breathless on exertion but of course there are those who have no symptoms whatsoever. Catching an episode on an ECG is not always easy. Do you have any equipment (like a Kardia or Apple watch) that can record your heart rate. If you could give members of this forum a little more information then we could possibly form a better opinion of your GP.

A GP is not always allowed to prescribe stronger medication for AF. Did yours say he would send you to a Cardiologist or Electrophysiologist?

Jean

Maglyn profile image
Maglyn in reply to jeanjeannie50

Thanks JeanJeannie. It's the Cardiologist/Electrophysiologist who has told me that I probably do not have AF. I did state that in my message that I had seen one privately. I was given an ECG at the time I was experiencing high BP, severe palpitations and feeling very unwell and the paramedic saw no signs of AF, nor did any of the cardiologists who studied my ECGs when I was taken into A&E. I was monitored throughout the night and all the next day and no signs at all of AF according to the Electrophysiologist and I had severe palpitations the whole time and felt unwell. I would have thought if the Electrophysiologist studied my ECGs on being admitted with high BP and high heart rate and feeling unwell with presumably what resembled an AF attack, that would have shown up on an ECG in A&E? The cardiologist/electrophysiologist was also on duty when I was admitted to A&E with palpitations and high BP and he and other cardiologists on the team studied all my observations and could not see AF. He also stated in his report that "what is particularly important is that the initial referral ECG that had come in was labelled as atrial fibrillation but did not actually show this, and even at the time when you were complaining of palpitations in the emergency department, your bedside monitoring definitely did not show atrial fibrillation, as this was something I specifically checked". This is stated by an experienced Cardiologist/Electrophysiologist so I can only go on his expert diagnosis. When I went to the GP surgery with severe palpitations and they did 3 ECGs, all three were studied by two GPs and a Clinician and they all said that my ECG revealed AF which means that according to them I was having an AF attack but the private cardiologist/electrophysiologist stated that when he viewed the same ECGs I had at the GP surgery, he said that they did NOT reveal AF. Therefore, either the GPs read the printouts incorrectly or the electrophysiologist! When I was having palpitations, which indicate a possible AF episode, there was no heart "flutter" just plain straightforward heart beat. the private electrophysiologist has sent his report to me and to my GP with the diagnosis of "ECGs showing atrial ectopics and incorrect computer interpretation as atrial fibrillation" therefore he does not think I have AF. He is monitoring me closely and I do have a Kardiamobile as he has taken me of bisoprolol and flecainide and requested that I send in ECGs if and when I have palpitations. Other than that I cannot give you any more information. At no time when I was in hospital did anyone refer to AF. I had an echocardiagram, following my discharge, which the cardiologist/electrophysiologist states does not show any abnormalities. He also told me that a team of cardiologists at the hospital were flummoxed by my symptoms as there was no conclusive evidence of a heart attack even though my Troponin levels were elevated (only slightly) but not really enough to diagnose a full blown heart attack. That's really all the information I can give you as not very experienced with AF as this has only happened recently. All I can say, is that I do not have a high heart rate as two of my friends do with AF and absolutely no "flutter". Obviously, I am listening to my electrophysiologist but cannot really question him as he is the expert! Do you think therefore from what you have suggested, that I should look for a top cardiologist (as the one I am seeing is the best qualified in our area) to get a second or even third opinion? I would value your comments as I am just a novice here. Many thanks

jeanjeannie50 profile image
jeanjeannie50 in reply to Maglyn

Well you're certainly a mystery. If an EP has looked at all your ECG's and can't see AF then I would take his opinion as the truth but what on earth is making you feel like you're having palpitations? I guess it could be stress/anxiety. Our minds are so powerful and I've proved many times in the past that thinking about my heart rate has triggered AF. I once got into bed and thought how calm my heart was, decided to get my machine to test if it was in normal rhythm, walked to a dressing table to get it and by the time I got back into bed my heart was hammering away abnormally fast. If I hear a noise in the night my heart starts hammering that's how good I am at promoting a fast heart rate. It took me years to realise that my thoughts could cause that. Anxiety is like fuel to AF.

Now if anyone had told me this in the early days of my AF attacks I would have given them a piece of my mind and it wouldn't have been nice! I'm not saying the mind is the cause of AF but what I do believe is that our anxiety can keep an attack going. Try to distract your mind in any way you can if you feel your heart doing an abnormal beat. Perhaps watch something on TV, read or ask a friend around and don't mention your heart.

It will certainly be interesting to hear how you get on, never before have I heard a story like yours.

Artificial additives in food or drink can also have an effect on our heart rates. Artificial sweeteners were a sure trigger for my AF.

It will be interesting to hear what other members of this forum have to say. Please keep in contact.

Wishing you a calm heart.

Jean

Peacefulneedshelp profile image
Peacefulneedshelp in reply to jeanjeannie50

I want to piggy back on what Jean is saying. Our bodies are such fine tuned machines that a lot of things sets them off. I recommend a book by Dr. William Davis, he is the Dr that wrote Wheat Belly. His current book, is Super Gut. I also listen to his podcast called Defiant Health. The episode on "How to stop treating health conditions". is very interesting toward the second half he mentions if we don't have the right microbiome, and many of us don't, we end will have cardio issues including AFIB. My ears perked up when I heard that and then of course I purchased his Ebook. I am just starting my journey down that rabbit hole. I learned from his Wheat Belly book that I am sensitive to grains and once I stopped eating grains my inflammation all went away including Migraines. I figure there is something more to learn from Super Gut. He talks of so many food additives that are harmful, one example is carrageenan how it causes inflammation. The other is Polysorbate 80 which keeps things from separating like peanut butter and ice cream. He goes into several others.

As Jean mentioned food additives trigger some of us off, so unless we are paying really close attention we don't know what we are getting into our bodies. that itself can be exhausting.

Maglyn profile image
Maglyn in reply to jeanjeannie50

Thanks Jean. I realise that anxiety can cause heart palpitations only too well. However, when I was having palpitations over a period of 2 weeks, I wasn't anxious or stressed about anything. I'm 77 and retired and really have nothing to be stressed about. These just came on out of nowhere. What is interesting, having read many responses, is that Covid or Covid vaccinations might trigger heart issues. I noted that I had a Covid vaccination on 27 September and on 29th was at my GPs having an ECG and diagnosed with AFib. Although the palpitations were occurring prior to the vaccination, my condition may well have been exacerbated by the vaccination. It was a Pfizer one, so not sure. There is a lot of research into long Covid and vaccinations. I also had a very bad bout of Covid in July, so all in all, there could be a connection. Will let you know how I get on and so many thanks for your kind words. Maglyn

mjames1 profile image
mjames1

If I understand things correctly, your GP looked at an EKG and said you had afib and then treated you. Later, other doctors, including an ep, looked at those same EKGs, and said they do not show afib. Nor in fact, do any of your EKG's show a fib.

If this is correct, it's apparent that you do not have a fib, nor did you ever have a fib and you were misdiagnosed by your GP.

In general, GPs are terrible at reading ekg's, so while disturbing, this is not shocking. And ironically, the EKG machines automatic readings are also not accurate, so if these are the "computer error" you were talking about, they are very common.

The best person to read an EKG and confirm a fib is an electrophysiologist (ep). A good EP always disregards the computer analysis and bases their ekg reading and diagnosis on their training and experience.

Jim

Maglyn profile image
Maglyn in reply to mjames1

Many thanks mjames1. My initial diagnosis was by two GPs and a clinician. When I was in A&E, I had several ECGs and none of them either revealed AF even though I had high BP and also severe palpitations. The EP also stated that when I was admitted and on a monitor 24 hours, there was absolutely no sign of AF even though I was suffering high BP, severe palpitations and feeling very unwell. I do know that GPs are notorious for misreading ECGs but my point here is that I was suffering very badly from medication side effects. This has been ongoing for three months and I have been extremely ill. If it wasn't for me seeking a private consultation with an electrophysiologist, I would never have known that I do not have AF, or possibly don't and would have been on that medication for the rest of my life. I don't understand that if GPs regularly misread ECGs why there isn't a system whereby they can submit their ECGs to an experienced cardiologist/electrophysiologist. With all the technology we have, this should be simple! Thanks again for your input, always useful to have other people's opinions.

mjames1 profile image
mjames1 in reply to Maglyn

The problem you point out is a terrible one and unfortunately not uncommon.

Who knows how many people are taking medication's for atrial fibrillation who don't even have it?

And this problem is not just limited to atrial fibrillation and that's why we have to take it upon ourselves to get involved and oversee our own medical care and not just take at face value what doctor's tell us.

Jim

in reply to Maglyn

Is there anything that you could link the palpitations to? Such as a particular food, body position, med, phone call situation, TV programme even, which could have triggered them? You don't say how old you are, and if this was the first time ever you have experienced the palpitations-the 'flight or fight' adrenalin surge could possibly be the cause? Sometimes it is spontaneous others they can be triggered by all sorts of things, as above! GP's are not trained in specifics, -why they are 'general' physicians, and only if they have a particular interest in something will they actually bother to find out more! Good luck!

Rambler398 profile image
Rambler398

Hi Maglyn

If I understood you correctly, you had side effects from the Bisoprolol?

I would be surprised if your GP prescribed Flecainide unless he had taken advice from a cardiologist after submitting an ECG

Maglyn profile image
Maglyn in reply to Rambler398

Hello Rambler398. No, sorry, do not have side effects from Bisoprolol on its own. I have been on bisoprolol for over 25 years but had side effects from new medication following my admission to hospital with severe palpitations and suspected heart attack. I may have suffered side effects from bisoprolol when it was taken alongside several new medications prescribed by the hospital. The GP only prescribed Apixaban for AF when they possibly misdiagnosed from ECGs. If you read my (sorry) long synopsis, I say that that I have been possibly misdiagnosed with AF by GP practice following 3 ECGs. Consulted an electrophysiologist who suggested that I did NOT have AF after he viewed all my ECGs from GP practice and also the many I had in A&E and hospital. He could not see any AF when I was hooked up to a monitor 24 hours in hospital. The hospital prescribed flecainide for the palpitations. Also Losartan for high BP and increased my statin dosage from 10 mg to 40 mg. Hope that's a bit clearer! Thanks again

Rambler398 profile image
Rambler398 in reply to Maglyn

Hello again

This is a conundrum. The hospital wouldn’t have sent you home on Flecainide for “palpitations”. They would have prescribed it for paroxysmal atrial fibrillation. And yet they said you did not have AFib.

I’m not clear whether you want ultimately to complain about a specific GP. The GMC puts said GP through the wringer, the process is generally very stressful. (My son is a medic).

From the information I think you have given, it doesn’t seem to me that the GP has acted unreasonably. He has to be judged against what the majority of his/her peers would have done.

What are you hoping to achieve by complaining about the GP? If anything, you might have a complaint against the the cardiologist for discharging you on Flecainide.

Unless there is something I am missing, I think the GMC would dismiss your complaint, assuming you take it that far. That might have unforeseen consequences in terms of your registration with that practice.

Have you sat down with this GP and the practice manager to let them know how you feel?

Maglyn profile image
Maglyn in reply to Rambler398

Hello Rambler398. Many thanks for your input. I think our wires are crossed. I didn't actually say that the hospital sent me away with flecainide. I am not obviously describing my situation very well. Initially, I went to my GP practice, three times with horrendous palpitations. They performed three ECGs which were viewed by two GPs and one by a clinician. On all 3 occasions they all said I had AFib. I was sent away from the GP surgery with apixaban and basically told that was it. A few days later I had to call an ambulance for very high BP 209/106 and still with palpitations. After a consultation in A&E I was admitted with a suspected heart attack. I was then hospitalised for 4 days. I was only seen my two doctors for about 5 minutes each and they were only interested in my suspected heart attack, nothing was mentioned about AFib. I had an angiogram to analyse what, if anything, was causing my so called heart atttack. The diagnosis was Acute Coronary Syndrome but nothing about AFib or anything else and was told that I would just have to take medication. I was released from hospital with medication Apixaban, Flecainide, Losartan, Statins and my ongoing prescription for Bisoprolol. I was then told that a follow up appointment would be made with a cardiologist and this was 5 months away. When I started all the medication I had horrendous side effects and couldn't understand why I felt so ill. I was being seen by the Cardiac Rehabilitation unit who were brilliant and they sent a notification to my GP that I was suffering horrendous side effects, but I had no follow up from my GP and I continued to have problems. This is when I took the decision to make an appointment privately with an EP and this is when he told me that he saw me in A&E and he couldn't understand why I'd been diagnosed with AFib as he couldn't see on any ECGs (and that included the three I had at the GP surgery) that I had AFib. He told me that I was a "puzzle" as there was also a question mark over the heart attack for which I'd been admitted to hospital. My Troponin levels were elevated but not by much, which is why the Cardiologist/EP questioned whether or not I had had a heart attack as my levels were only in the 100s, not the 1000s as would be expected with a heart attack. He also told me that he had studied my 24 hour monitor whilst in hospital and at no time, when I was suffering horrendous palpitations and high BP, did he see AFib. This is all I can tell you and that is why I think the GP surgery are somewhat at fault. They are abysmal in any case to say the least as many of my contemporaries have had dreadful treatment from the same surgery. I realise that complaining is stressful as I too have many medical people in my family but they encourage me to complain as this is not good enough. Sorry this is so long winded, but I have tried to explain as succinctly as possible. Hope this clarifies things for you?

Rambler398 profile image
Rambler398 in reply to Maglyn

Thanks Maglyn, I had read the whole thread 🙂

From your reply to me immediately above you said ….

“I didn't actually say that the hospital sent me away with flecainide”

“I was released from hospital with medication Apixaban, Flecainide, Losartan, Statins and my ongoing prescription for Bisoprolol”

When I mentioned the stress associated with complaints, I was talking about stress for the GP, whether or not there was any poor practice.

Anyway we are getting off track and the key thing is to find out whether you have AFib. It can be extremely difficult to diagnose and many patients are sent away and labelled as anxious.

An implantable loop recorder is sometimes justified

bhf.org.uk/informationsuppo...

Maglyn profile image
Maglyn in reply to Rambler398

Many thanks for that. What I find difficult to understand is if it's so difficult to diagnose AFib, do you think that a cardiologist/electrophysiologist can't detect it from several ECGs? How come so many people are diagnosed with AFib? I have several friends who have it and they say that their pulse does a "flutter" even though they are not having an AFib episode. They also tell me that even during normal time, without an AFib episode, their heart rate is quite high, in the 70s and 80s. Mine never passes 64 and is often just in the high 50s but always stable. My heart rate has never done a "flutter" and even when I was having the horrendous palpitations and feeling very unwell, my EP asked me whether or not I detected a "flutter" as he demonstrated what an AFib pulse rate was and mine definitely didn't do that! I am very confused if AFib cannot be detected either on ECGs or 24 hour monitors? How do they detect it and why was I told that definitely I had AFib by my GP surgery after reading the three I had and yet the Electrophysiologist told me he could not detect it on these ECGs? This seems to me to be a minefield. Who do I believe?

wilsond profile image
wilsond in reply to Maglyn

Because paroxysmal AFib is just that,it comes and goes . To catch it can very difficult. A 7 day Holter monitor is good. It isn't there all the time, inconveniently!.

If not going on at the time of the ecg,no evidence 🙄 annoying

Rambler398 profile image
Rambler398 in reply to Maglyn

“What I find difficult to understand is if it's so difficult to diagnose AFib, do you think that a cardiologist /electrophysiologist can't detect it from several ECGs? “

Yes absolutely.

First,your EP in this case was eliminating AFib, not detecting it.

And second, because episodes of symptomatic and asymptomatic AFib can be very infrequent, years apart even, tools including Kardia, 24 hour and seven day ECG recordings can be helpful, implantable loop recorders as referenced in my post above, even better,

I would strongly advise against stopping your Apixaban during this period of uncertainty. There are alternatives and your GP or cardiologist/EP can advise.

BenHall1 profile image
BenHall1

Hi,

Re your paragraph dealing with .... "I am now considering submitting a complaint about my GP practice" .....I am at a similar point with my surgery who, the Care Quality Commission (CQC ) rate as good ! The CQC have four grades .... Inadequate, Requires improvement, Good and finally, Outstanding.

Research I have undertaken suggests that a normal process of complaint is first complain to surgery, depending on the response then complain to Integrated Care Systems ( ICSs ) formerly, Clinical Commissioning Group (CCG), then depending on response to the Care Quality Commission (CQC ). I regard this as a deliberate convoluted process with one objective in mind ....... to put the would be complainant off complaining.

My plan is to complain direct to the CQC. I will then send a copy of my complaint to my MP in Westminster with a request that my complaint also be referred to the Secretary of State for Health.

But still be prepared to be put off, to receive a lack of cooperation. I hope you have some degree of strength to go through all this. It isn't easy. Personally, I regard GP's practices as little fiefdoms aided and abetted by both their professional body, the British Medical Association (BMA) and their regulatory body, the General Medical Council (GMC ). And don't get me started on Jnr. Doctors.

Meanwhile I wish you well in your pursuit of medical excellence and a return to a healthy lifestyle.

John

Maglyn profile image
Maglyn in reply to BenHall1

Hello John. Many thanks for your suggestions and very sensible response and also the correct procedures. I realise that complaining is a stressful business, but I think it is necessary. I know it will be a long road, but am prepared to go there. I wish you well also and hopefully a successful outcome. Maglyn

Popepaul profile image
Popepaul

Many people are misdiagnosed on a daily basis in all countries which have a good health system. Medicine is not an exact science and I have never met a medic to date who would claim that it is. An initial diagnosis is often balanced by differential diagnoses. My modest understanding of afib is that diagnosis is usually confirmed by the absence of a P wave on an ECG.

Your experience has clearly been distressing. The good news is that a specialist has stated that you do not have Afib. Something to celebrate for sure. If I was in a similar position to you I think that I would not make a formal complaint unless I thought that the GP was an incompetent clinician with a potential to harm others.

Regards.

Maglyn profile image
Maglyn in reply to Popepaul

Thank you Popepaul for your contribution and advice. I am very aware that it is a good thing to have discovered that I possibly no longer have AFib, but I feel that when a misdiagnosis is uncovered, that the patient has a right to ask why? I feel complacency is not valid in medical situations. The only reason I feel there should be a complaint is to stop it happening to others. That way, we reduce the number of misdiagnoses. You wouldn't constantly return to a restaurant that served terrible food, you would either complain or not revisit. My GP practice is abysmal and has an extremely bad reputation. I have complained, justifiably before, and had a profuse apology, but very little seems to change. When I first moved to this area, 10 years ago, the GP practice I'm still with, was brilliant. It has deteriorated dramatically over the last few years. It's impossible to change practices as most of them have been closed within a radius of 5 miles and therefore we have no option. Many of my contemporaries have similar issues with the practice. It has failed on many occasions. I would just add that although I have been possibly been midsidagnosed, the specialist still maintains that I had an "event" which he is still trying to figure out. Therefore, I am not out of the woods yet. However, I will still complain to my GP as I said before, it is to protect others from this happening to them. I would also point out that my GP practice has literally one star in its review which speaks volumes!

Popepaul profile image
Popepaul in reply to Maglyn

Fair enough. You appear to have a cardio problem and the diagnosis, causation and prognosis are all as yet unknown. Your EP has discounted the diagnosis of Afib at this point in time. It may take while before you have some clarity on this issue. It may require the emergence of further symptoms together with further investigations to achieve this.Best either for your health.

wilsond profile image
wilsond

So you do not have AFIB. A GP is not an expert in all medical matters ,more of a gatekeeper/ referral portal for conditions abovectheir paygrade/expertise, so they made a suggested diagnosis based on their interpretation of ECgs, but referred you on to people more experienced to confirm?

They found that you do not have AFib,based on their field of specialism.

If you have had an Electrophysiologist look at your readings and diagnostics say no AFIB,why are you asking if you should look for ' a top Cardiologist?' Not sure why? EPs are the experts in arrhythmia.

So celebrate and be thankful!

Maglyn profile image
Maglyn in reply to wilsond

Hello Wisond. Many thanks for your input, very grateful. Two GPs and a clinician at my surgery told me emphatically that I had AFib, it wasn't a "suggestion", nor did they say I would be referred to any further experts such as a cardiologist or EP at the time. They simply gave me a prescription for apixaban and basically said "go away"! I mentioned looking for a "top cardiologist" as I think someone, when replying to my post, suggested that possibly I might still have AFib, even though I had already consulted a cardiologist/EP. Perhaps they hadn't read that in my rather long synopsis. I am very happy with the EP I am seeing and he is monitoring me carefully. Maglyn

secondtry profile image
secondtry

I understand raised troponin levels also indicate an issue arising from either Covid or the C-jab; you are unlikely however to get any medic to agree the cause was the jab but the issue is slowly being dribbled out in MSM.

mesally profile image
mesally in reply to secondtry

My ep says covid or the jab is responsible for a lot of heart issues, especially afib

secondtry profile image
secondtry in reply to mesally

You have got an ethical EP, my understanding is the jab has more serious consequences than C itself depending on the batch you were given. The good news is there are many good medics/scientists around the world working on neutralising these issues.

Ppiman profile image
Ppiman in reply to mesally

Would you please confirm that your EP (i.e. a cardiology consultant trained in electrophysiology) told you, unequivocally, that the Covid-19 vaccine is causing " a lot of heart issues"?

I was shocked when I read this statement, to be frank.

Steve

mesally profile image
mesally in reply to Ppiman

Yes, he said covid is a cause, and the vaccine. Latest research seems to support his view

Ppiman profile image
Ppiman in reply to mesally

Could you give me a link to that, please? I’ve tried hard to stay abreast of the latest research partly thanks to my medical interest and background in the industry and have drawn a very different conclusion from that.

Steve

wilsond profile image
wilsond in reply to Ppiman

Me too Steve. Very dodgy

Ppiman profile image
Ppiman in reply to wilsond

You mean the vaccine is dodgy? Surely not.

The latest - thatI have read - is that the Covid-19 virus’s spike protein is “the pathogen”, able as it is to cross the brain barrier and to latch onto ACE2 expressing cells (prolific in the type of fat some people have lots of, surrounding their major organs).

The spike protein introduced (or produced) by the body in response to the vaccines has not been shown to be pathogenic. And, it’s highly unlikely indeed that it ever could be.

Or have I missed an important piece of the jigsaw puzzle? 😳

Steve

mesally profile image
mesally in reply to secondtry

Yes, current and future research will certainly make for interesting reading

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

I'm in NZ a NZder.

I was mishandled even though the high heart rate was clear. Also I said no to BB Metaprolol but still got 3 x 27.7 pills to take daily.

No follow up for Stroke in which I could have had a H/Specialist to have a ECHO, ECG, and 24-H/monitor to show the 186bpm. Breathless, no energy with any exertion. Pauses at night.

At 1 year 5 months Dr wouldn't change BB so I asked for H/Specialist.

She changed me to Bisoprolol but Dr moved me up to 10mg daily.

Another 24-Hr H/Monitor. H/Rate 156 . Nothing was done. Some improvement but not controlled with my Rapid, Persistent AF H/Rate.

Then a Locum said go private to see Dr W..... I did, he was interested and started me on CCB Calcium Channel Blocker.

The 180mg dropped my H/Rate to 51! So talking to our NZ Healthline Dr and a Nurse at NZ Heart foundation and had worked with Mr W... explained that a CCB must be separated with BB. CCB reduced to 120mg and reduce Bisoprolol to 2.5mg. Bingo.

Now controlled, I feel really good. Walking further without stopping. Night Avge H/Rate 47 stays there. Always low when asleep.

I have additional diagnosis, such as found with shadow on thyroid which was biopsied to discover thyroid papillary cancer. Under control with TSH levels @ 1.8.

Unfortunately my 4 year Neck Scan showed a 'thing' so recalled. I had a CT scan today as surgeon wants a clearer picture of it.

That's life but I have my fingers crossed.

I'm at 4.1/2 years from Stroke but at sometime I want to write about it. I refuse that certain folks will not be a want to see. I don't trust them. The 24-hr Heart Monitor is favourable with my latest regime of meds for 2 years plus now.

Cheri JOY. 75. (NZ)

Singwell profile image
Singwell

Goodness - thats really quite awful. And for you too. Firstly I hope you get ti the bottom of what is going on physically for you and have treatment or management options to move forward. That's the most important thing. As far as I know, you can make separate complaints to hospital if you think that's warranted, and to the NHS or other trust that runs your GP practice. I've had to do thus. Research who runs the practice - when I did it here it was Powys Health Board. You need to find put who your GP and their practice is answerable to.

I'm so sorry you've had to go through this.

Maglyn profile image
Maglyn in reply to Singwell

Many thanks for your king words and advice. I have already complained to my GP practice about a prior problem and I had a profuse apology as they knew they were in the wrong, but nothing has changed. I know some of the procedures of complaints and that the first step is to complain to the surgery. I have medical people in the family who have advised me which bodies to report to but many thanks for your advice. I do hope your situation has been resolved.

Singwell profile image
Singwell in reply to Maglyn

Thank you. Yes, the lead GP was furious about it and shouted at me when I had an appointment- outrageous really. But things did improve and I like to think my complaining helped towards that.

Genesini profile image
Genesini

I had the same back in 2020, the paramedics who attended said they had never seen a reading like it, I was flipping between 300 bpm and 70 bpm...the student para asked my permission to keep my reading to show her tutor for discussion. Admitted to hospital for 5 days, returned to NSR eventually after several medications. Follow up 4 months later, no further episodes during that time, a cardiologist said it may not have been, AF but an adverse immune response to AZ jab. I have never had another episode thankfully, so I assume that's what it was. Wonder if you've had anything recently that may have caused a similar immune response? Wishing you all the very best.

Tapanac profile image
Tapanac

Hello

In 1998 I had exactly the same as you and I was sent from my local hospital to St Georges Tooting where I was diagnosed with Syndrome X and gave me an angiogram to check and yes Syndrome X which was involuntary coronary spasms

This went on for years. I was given bisoprolol to try and halt the spasms, but didn't really work.

I had an 11 1/2 hour brain surgery for a brain tumour, again in St Georges in 2016 and they found during the anaesthetic I had no sign of a heart problem as I asked specifically to make sure it didn't happen during surgery.

The upshot was in 2017 I was admitted to hospital in 2017 eleven times with palpitations and ectopic beats. They then thought I had atrial flutter. Had an ablation which was partially successful.

Put on flecainide and bisoprolol and apixaban and was good for ages, but this year I had a pacemaker hoping to help the atrial fibrillation which had developed and been very good until now. I had covid 3 days after the vaccination and it has given me a few acrobats

So after this long message, please try not to worry too much and just wait and see what your cardiologist or EP has to say.

By the way afib or flutter if paroxysmal does not always show up on an ecg unless it is happening at the time.

I think I must have had afib or flutter since way before 1998 not syndrome X which I think was yes you have something, but don't know what it is!!!!!

Hope you feel better soon.

Vonnegut profile image
Vonnegut

All I can offer is Good Luck!!

My surgery is fairly useless too but I have high hopes of a new young woman doc though she’s pregnant and will be off soon!!

Maglyn profile image
Maglyn in reply to Vonnegut

Many thanks for your response and sorry to hear you also have problems with your surgery. I do hope the new GP is better and even though she's pregnant, she may well just have maternity leave and return. It's so rare to hear anyone these days say their GP is brilliant. There are some, but they are few and far between these days. Good luck.

Vonnegut profile image
Vonnegut in reply to Maglyn

Thank you- I asked the doc if she was going to breast feed and she said she planned to, so she might not be back quite so soon. I stopped teaching when I had my children as I breastfed and just gave a few private sessions to a few children at home and later visited kids who had been excluded when my children were older.

Ppiman profile image
Ppiman

My, you've had a lot of replies. I became a bit confused over the timeline of events and treatments and which had caused so many problems but had a few other thoughts that I haven't read from others (I haven't read all replies, though, so apologise if these have been covered).

Having had experience of this, those three initial ECGs might have been hard to read. Your high BP, heart rate and palpitations could have caused the traces to be "noisy". The PACs you had, if they occurred in runs, might have given the appearance of the "irregular irregularity" typical of AF and the electrical noise might have hidden the tiny "P" wave that signifies normal atrial contraction.

I am not sure that GPs are all necessarily poor at reading ECG traces. The word is relative, too, given their training and experience, so may be a touch unhelpful since all see large numbers of cardiac patients, including many with AF, and many will have years of experience.

The term "EP" can be confusing, in the UK, at least. As far as I understand it, an electro-physiologist is a consultant cardiologist who has taken additional training in the procedure of cardiac catheter ablations. Usually, they will be part of a cardiology team at a teaching or main hospital where their cardiologist colleagues might also be "expert" in treating cardiac arrhythmias, and in deciding whether a cardiac ablation would be the best treatment for one (and, if so, handing over to an EP for a final decision on a treatment plan).

I was wondering, too, whether your GP prescribed apixaban as a precautionary move awaiting your cardiology appointment given the chance that AF (and thus the increased stroke risk) was present?

Finally, whatever caused the heart attack (poor you, by the way, how truly awful this must have been, I can't begin to imagine), seems to be a complex issue that hasn't been fully elucidated by the echocardiogram. I was wondering if you had thought about asking for a cardiac stress MRI? I had one and it was said to be the "gold standard". They are expensive when done privately, of course, at up to £2000 so far as I can see online.

Steve

Maglyn profile image
Maglyn in reply to Ppiman

Many thanks for your input and advice. I realise that my story is a long and complicated one. I will just say that I went to my surgery 3 times with palpitations and on each occasion they performed an ECG. Two GPs and a clinician read them and quite definitely diagnosed AFib. When the same three ECGs were viewed by my cardiologist/electrophysiologist I saw recently, he told me he didn't see any sign of AFib even though the three people in my surgery adamantly diagnosed AFib. I was given a prescription of Apixaban by my GP and basically told to "go away"! I have since had a diagnosis by the expert EP which states "ECG showing atrial ectopics and incorrect computer interpretation as atrial fibrillation". It appears to be a computer error, although I wonder if that's a bit of an escape clause for the GPs who definitely diagnosed AFib from my first three ECGs. Following my three visits to the GP surgery, I had a suspected heart attack and was hospitalised for 4 days and that is where my story continues as I needed answers and therefore went down the private route with an EP and thank goodness I did as I would still be on all the unnecessary medication.

Ppiman profile image
Ppiman in reply to Maglyn

How complex and what hard work for you, and during such a massively stressful time. You were certainly put through it. The computer analysis is "AI" interpretation and is likely, most of the time, very accurate and might well even stop the errors that the human mind can sometimes bring in. Sadly, it's still far from perfect as you have found.

I do wonder whether GPs "don't know what to do" with AF or, at least, with patients who have it. The reason is that there's not that much "to be done" apart from rate control, anticoagulation and a letter to a specialist. That is all they can initially "do".

AF in itself is the upstairs in chaos while the downstairs essentially puts two fingers up to it and gets on as best it can with life. And it does that very well much of the time. An elderly friend of mine has had permanent AF for very many years and celebrated 90 years of rather a good life last August. Of course, the downstairs often does need a bit of medical intervention, but in my friend's case it's only ever been a "blood thinner". When more is needed - which is when symptoms cannot be coped with - rhythm control drugs or ablation can be offered, but only by a specialist.

I do hope you get to the bottom of things soon. There is so much to be anxious about when we are made aware of the [mal]functioning the heart. I wish it were otherwise. My own AF is a small part of everyday arrhythmias and they worry me far more than AF does.

Steve

Singwell profile image
Singwell in reply to Maglyn

I've just picked up on this and wondered if the original ECG that was misinterpreted might have been a supraventricular contraction extopics. My understanding that these are extra beats in the atrial chamber and I did read that they might be a precursor to AF. Just a thought.

Maglyn profile image
Maglyn in reply to Singwell

Thanks for that piece of information. Sounds interesting. Perhaps I will mention this to the EP next time. However, not sure whether an expert cardiologist/electrophysiologist values these sort of inputs. I would have thought that perhaps he would have mentioned this when he viewed all my ECGs, monitors, etc. but one never knows! Thanks again

Singwell profile image
Singwell in reply to Maglyn

True. I was thinking more of the GPs error or even mechanical misinterpretation of the ECG. I guess you could ask- was there any reason for the incorrect interpretation?

Maglyn profile image
Maglyn in reply to Singwell

Many thanks for your input. Possibly GPs should be able to send an ECG straight through to an EP but unfortunately we don't live in a perfect world! I did find it a little odd that the GPs definitely diagnosed me with AFib and never once said they would have to have it confirmed by an expert. I have since been advised that my ECGs had an "incorrect computer analysis labelling them as AF". Which is exactly as you say. However, where does that leave the patient?

Singwell profile image
Singwell in reply to Maglyn

It leave us quite rightly questioning and not giving up.

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