My wife has been diagnosed with atrial fibrillation. The diagnosis was made from pulse-rate readings and one ECG taken when she had to undergo two major emergency operations to clear a blocked bowel/GI tract. We are very concerned that the diagnosis is wrong and that having to take Apixaban is a dangerous option. The reasons for our concerns are as follows...
1. All of the readings were taken when she was under extreme stress and trauma when waiting for or recovering from life-threatening operations.
2. They were taken when she was made to stop taking her beta-blocker medication
3. She had been given ketamine and suffered a severe, traumatic reaction to it. She is still being treated for PTSD from this. The one ECG showing AF positive was taken when she had just been given ketamine. Others showed no evidence of AF
All of these factors would cause an increase/variation in pulse-rate. Moreover, an ECG taken after discharge from hospital showed no evidence of AF. No other tests were done to establish the diagnosis. She has neither seen nor spoken to a heart-specialist. Nevertheless, she was put on a full dose of Apixaban despite the fact that it should not be given to people weighing less that 60kg and she was just 30kg at the time. She had side-effects to this drug and eventually managed to stop the nurses insisting that she take it.
Now, some 18 months after the last operation, a cardiologist has written to our GP saying that she does have AF and should start taking the full dose of Apixaban. In the real world, however, she is still only 35kg and has no symptoms of AF. She is 74 years old and suffers from Ehlers-Danlos or Hypermobility Syndrome which can seriously disturb any medical condition particularly recovery from injury. Having to call an ambulance every time she suffers a minor cut or bruise is simply not an option.
My question to the forum is simple: can an accurate diagnosis be made from diagnostic data taken under the conditions described above? If not, then what other tests should we try to get. We have already asked this question of the NHS people involved. They say that they will not do any further tests because “none of the testing procedures will show anything different from the initial readings”.
Thus, we are quite willing to “go private” because the NHS simply will not do anything.
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Tharg
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Sorry to hear this. Your wife needs an ecg over 24/48 hours to see what is happening. You are correct Re dose of Apixaban and I would ask for a second cardiology consultant opinion. gPs can organise the ecg testing so get this first so a consultant can see what is happening. Your GP also knows Re doseage of Apixaban
Hi Rosy Thanks for reply. Sadly, don't think our GP will fix the test because the Consultant God has said it won't be appropriate. Will ask, though. Will probably Go Private and fix it ourselves.
Although I'm British, I l now live in South Africa, but I do recall the NHS of my youth and our kindly family doctor for whom house visits were routine. Those of us who can, use private specialists here, as the public system is so overwhelmed, and I am quite amazed when I read on this forum of the attitude of some of the Specialists, members encounter in the NHS. Here we are treated with respect and consideration or we would vote with our feet, and the result, no patients, no income ! Your comment reminded me of the old joke 'What's the difference between a Surgeon and God -Answer, God does not think he's a surgeon!'
Very true, pusillanimous. I very much fear that the UK's NHS is soon to come apart completely. The Consultant God's arrogance is only partly to blame. Our governments seem dedicated to dismantling it, little by little, and establishing private healthcare which, of course, will be provided by their mates.
My cardiologist suggested I purchase my own ecg tester at £100 which I did and I use it to take my heart rate when I feel afib or palpitations I send the reading to him via his email address he gave to me he replies and told he'd made appointment fir me at NHS..resulting in me taking a different blokka and blood thinners.
Thanks, Markham. Came to same conclusion as you. We will get out own testing kit and see what it says
Hello Tharg and welcome to this forum although I see you have used a different forum for almost 2 years. The members here will feel for you because you are clearly in a difficult situation. Firstly, you need to understand that most of us are not medically trained but across the membership there is a vast amount of experience.
There are basically two types of AF, one is persistent/permanent which is relatively easy to detect because as the name suggests, it’s there all the time. The other is Paroxysmal AF which is a very different kettle of fish in that it can come and go at anytime and often without warning and can be extremely difficult to detect, especially if the patient is asymptomatic. The chances of having an ECG at the time the patient is having an episode are rare which doesn’t help because an ECG is the only way AF can be effectively diagnosed. The problem is that if AF is diagnosed, then the patient is subject to a significantly higher risk of stroke but given your wife’s weight, you are right that under normal circumstances, the dose should be halved. This is clearly stated in the NICE guidelines and I have included a link for you.
It’s often difficult to determine what may have caused AF but it’s unusual, but not impossible for AF to occur then just disappear, generally it is known to be a progressive condition so in some ways your wife appears to be lucky but that doesn’t really help regarding the stroke risk.
The first thing to do is to find out as much as you can about AF and if you click on the link below, it will enable to scroll through heaps of information, mainly provided by the AF Association, that will give you a better understanding of the condition.
Regarding diagnosis, if you don’t know how, learn how to take your wife’s pulse and immediately she senses anything unusual, you will be able assess whether or not her pulse is irregular, it it is, that’s pointing towards having AF. There are also monitors you can purchase such as Apple watches but the Kardia system, used in conjunction with a smart phone is very effective and the reports are generally acceptable to cardiologists and EP’s (Electrophysiologist is a cardiologist who specialises in arrhythmias). The one lead is perfectly adequate for most people and costs around £100, check out Kardia mobile on Google.
I understand that the circumstances surrounding your wife’s original diagnosis are unusual and you are right to challenge it but until you are absolutely sure that she hasn’t, then please consider the stroke risk because you probably don’t me to tell you that the affect this could have is likely to be life changing.
These are just my views, I’m sure others will offer lots of help and advice, best wishes……..
Hi FlapJack Brilliant info' , sir! Yes, I've been using these forums for my own RLS for some time. Now, Mrs T's condition means I'll use it for hers, as well. Have not yet gone into all the data sources you mention but they will be wonderfully useful. The Kardia mobile route sounds particularly promising.
You’ve had 2 excellent replies outlining AF and next steps.
You have very valid points re:- dose of Apixaban but your GP should be able to sort that for you.
Please be reassured that taking Apixaban does not mean a hospital visit for cuts and bruises. I’ve been on Apixaban since 2014 with no issues and I’ve had surgery & dental work done without stopping, broken 3 bones and also have EDS & neurological condition.
You can neither confirm nor rule out AF with one or two ECGs and Paroxysmal AF can be tricky to capture. That’s why continuous monitoring is advisable.
If you can see a specialist cardiologist Electrophysiologist or EP for short, they will be able to discuss confirmation of diagnosis with you but be aware that waiting times are very long in UK and 18 months+ is not unusual so consider a private consultation circa £200-300.
If AF is confirmed it is usual to have an Echocardiogram and full blood monitoring.
I consider Apixaban my best protection against AF induced stroke so although I’m sorry to hear of your wife’s struggles - it’s very encouraging to hear that she was prescribed Apixaban at diagnosis.
Hi CDreamer Thanks for wonderful prompt reply. Glad that Apixaban is working well. Surprised that it does not mean trips to A&E for cuts/bruises. One of our neighbours is taking it and seems to have an ambulance out very three weeks or so. If Mrs T does need medication, I doubt Apixaban will work. When they made her take it in hospital, she experienced dizziness, nausea and debilitating lack of energy. I must add that she didn't even know she was on it to start with. It was only when she asked what the pill was that she was told - in a most offensive manner: she was "making a fuss" and "causing trouble" by insisting that she was given answer after the nurses had initially refused to tell her. Just one of the many offensive, bullying behaviours of the Worthing Hospital NHS staff which have made us distrust and re-examine everything we are told by that staff.
I have taken apixaban for over a year and have never had a problem with cuts or bruises. The only thing is to get it checked at A and E if you bang your head.
Thank goodness all hospitals are not like that. My elderly Aunt was I. Worthing Hospital a few times years ago and it doesn’t seem to have improved since then.
Hi Desanthony. Sadly true about Worthing. Awful place. Mrs T's mother had to go in there with broken hip some years back (aged 93). Died three weeks later in the place - of pneumonia on a surgical ward. As did three or four others on same ward. Came in for surgery, killed by infection caught on ward. Proving it? No bloody chance. Records change, events cease to exist. Disgrace.
We have a family member and friend who had similar experiences where the notes disappeared. One was lucky enough to have been filmed having a new cancer treatment which happened to be the wrong one for her on the local tv so when it came to sue it didn’t even matter that the notes had mysteriously gone missing!
Hi, desA Nice one! Great to see that once in a while the victims of NHS malice actually get lucky. I'll bet that the perpetrators still managed to cover their @rses though.
Oh my goodness. That is totally unacceptable for your wife to have been treated like that. Not telling someone what medicine they are being given and why sounds like malpractice to me. I would certainly go to a private Dr if you have the means. I live in the USA and I have seen more than one Dr who thinks they have God instead of M.D. after their names. Healthcare is broken everywhere. Best to you and your wife.
Hi, Belinda. Many thanks for your reply. You are perfectly correct to say it is malpractice. Proving it and getting something done about it is near-impossible in the UK. We know from experience that records get changed or disappear to prove that claimants are the Bad Guys. The medical "profession" close ranks and protect themselves no matter what happens to patients.
Oh so true. I declined a nuclear stress test when I was in the hospital awhile back. Allergic to the contrast. Said I'd do the treadmill. Dr wouldn't let me. So he put down that I was noncompliant. No reason put down why I declined. Saying that I was noncompliant made him look good. What a jerk he was. When I followed up with my cardio Dr she said there was no reason for me to have a stress test. She was a little angry about it. Too many women in this day and age are still being ignored. We are hysterical or hostile or it's all in our minds. Some men get treated like that but mostly us women. I get comfort in thinking the devil will have a full house with these bad Drs. 😈😁
Oh so do agree, Belinda. As a sufferer from Ehlers Danlos syndrome, madam must take an active interest in all aspects of her health. It is a rare condition and people, particular GPs/MDs know so little about it. Mis-diagnosis of any other condition and/or prescribing of drugs dangerous to Ehlers Danlos could be fatal. Nevertheless, she is still labelled as "making a fuss".
It's so unacceptable that this happens in this day and age. Makes me wonder what they actually teach in medical schools. Certainly not caring, concern or compassion for the patients. Nor how to listen to the patient with an open mind. My best to you and your wife. And prayers. 🙏
You don't have to be in afib all the time to have afib. Given her age, anticoagulants may be indicated especially is she has other issues. It's all based on her CHADS2 score which you can look up.
Your concern about her weight and dosing has merit. Speak to your doctor about some type of monitoring and if not receptive seek another opinion. Maybe this article will be helpful.
Cheers, mjames. Will check out that article as soon as. Already decided that we'll seek another opinion. Trouble is, finding a cardiologist who is not part of the clique which runs the Worthing Hospital NHS. As stated in reply, above, they have given us every reason to distrust them. In addition to aggressive behaviour, they have made simple basic mistakes: giving the wrong medicine, and on two occasions, giving her a wrong diagnosis in other matters (later corrected without even the hint of apology).
Yes, I've run into that. Doctors are often reluctant to criticize or change treatments/medications from other doctors in their own group or hospital system. So unfortunately you often have to go outside that system to get a true second opinion.
Hi Tharg, you and Mrs Tharg have my sympathy, when you are getting nowhere with the health service it's difficult to get around it. Advice here to go private if you can is sensible but get a quote first, they will charge you £100-200 for just doing an ECG nevermind seeing a consultant. Also you should have no problem seeing a different NHS consultant at a different NHS hospital, this is all allowable.But to the diagnosis and *** warning ***I'm no doctor*** but my understanding is that AF patients (mine is permanent) have a different heart beat structure than normal. That is our heart beats (the zig-zag pattern of peaks and troughs around the 'beat') are different, particularly we are missing one of them, the p-wave. It may be that the ECG your wife took showed this and that's why/how she was diagnosed. This would show up thereafter. Some ECG machines will diagnosis this automatically. You can ask for copies of the ECG graph from the Dr if you are interested. They will have it on record and you (well, your wife) are allowed to see it.
Me, I'd go back and ask them to *explain* what and how they got to this.
Apologies if you've already done all this! Very best of luck, Gary
Thanks, Gary. Good to hear some of the science behind it all, We will go private - only way to get anything done. And will get the readings checked as you suggest. Trouble is, to the NHS people involved, making sure that they have done their jobs properly is seen as "making a fuss" . Thus need to find a private quack with no connection to them.
Hi Tharg,If you are thinking of a private Consultation, consider Dr James Rosengarten who can see your wife in Margate, Kent, not too far from your Worthing home.
He is an excellent Consultant Electrophysiologist / Cardiologist, with an understanding and sympathetic manner.
During the consultation he can perform an ECG as well as a physical examination.
This should all total less than £500 and give you and your wife peace of mind.
Hi there, everyone who has posted your helpful thoughts over the past day or so. I'll get round to personal replies as soon as I can, it'd be impolite not to. Might take a wee while as we are doggedly searching for a suitable Consultant God to check diagnosis.Thanks again, folks.
I had no meds before the stroke in Sept 2019 and found to have AF rapid and persistent.
4 days in hospital later I was given a carotid scan. The lass said that she would give me two for the price of one (ha ha - no cost and check my thyroid.
Ooops "you have a shadow on your thyroid". I will get my boss to look.
St John ambulance was waiting for me to be transferred to Kaitaia.
Meanwhile I was put on Metroprolol x 3 of 27.90mg at one time, (which I said not to as it made me breathless), 10 mg arvostatin, 110mg PRADAXA twice a day.
On the Monday I got a call from Whangarei Northland DHB where I had come from asking is I would consent to a biopsy of my thyroid.
Of course I said "yes".
I had the Drs 4 weeks later as no test done.
Also NO FOLLOW UP for a Stroke.
I struggled with Metroprolol, breathless and tired. Instant sleep at times.
Passed my Driving test 10/10 in December 2019..
November biopsy which proved I had Papillary Thyroid Cancer.
The Triage of group of Drs were an Encrinologist (hormone studied) who was on my Stroke Ward of 4 patients, A Surgeon (with others checking too of scan) and Anaethetist.
I had my Voice Box cjhecked prior to operation.
An argument 'to wait for 6 monyths post stroke.
The surgeon and anethaestist won. It was done in 4 months Feb 2020. They disregarded the AF but there were 2 anaethetists in op room.
Surgeon ordered 1-2 saline bags and a thick blue dye put through (painful).
The thyroid was removed along with 12 lymph nodes. 2 were affected.
I was started on replacement hormones which I take DAILY. Keeping at 2,0-3.0 TSH.
I demanded to see a cardiologist. So in 2021 January I had tests ECG & Echo of Heart done.
I was changed from Metroprolol to Bisoprolol and avge day heart rate went from 186 down to 156. Still not controlled and with AF.
In December 2021 I went privately to a private Heart Specialist.
I was given 180mg Diltiazem. But within 2 hours my rate dropped to 51!
Scared I rung our NZ HEALTHLINE. I was told to cut down on Bisprol which I had put down to 7.5mg.
3 days later another drop so I rung Heart Foundation and got told to separate the CCB and the Bisoprolol.
Also the private specialist was directed to cut down on Diltiazem to 120mg.
So I settled down to 93 avge hbpm day
and
48hbpm stayed there.
Diltiazem 120mg am. and Bisoprolol 2.5mg pm
statin 10mg
PRADAXA was put up to 150mg by Kaitaia x twice a day. I noticed the change from Whangarei to Kaitaia so in December 2021 I asked for my prescription to change. I have a hard rash with it.
I am balanced.
Just taken BP and PULSE
123/72. 77 HRate
Fab.
Question, demand to get your ManageMyHealth for your own responsibility.
I had children concerned with the breathlessness.
cheers JOY 73. NZ
I refused RADIO ACTIVE IODINE which is automaticaaly given.
But I had LOW RISK cancer removed.
Also I tried and it was too difficult to go down to SUPPRESSION. I refused to overdose on SYNTHROID. Well I was on another which never kept the same.
It's the British NHS and you have a right to choose your hospital. So go to your GP and ask to go to a different one. I can recommend Eastbourne where the stroke unit got me back on my feet after I was completely paralyzed when I had a major stroke after not taking the Apixaban I was prescribed even though no consultant or GP had ever seen an AF on their monitors. They were prescribed from my description and age alone. I was 76 when I had the stroke and I'm 78 now. I can never get back the piece of brain I lost during the stroke so wish I had taken them sooner before I had the stroke.
I suspect that you cannot attribute any side affects of Apixaban (other coagulants are available) until you have been on it a while. I initially thought that I had side effects but that proved not to be the case (other medication). I also thought I was to light for the full dose but it was explained at Eastbourne that there are 2 conditions that have to be fulfilled, not just the weight one. I have never been back to hospital after my discharge. So you can quell your fears with regard to being in and out of hospital constantly. My wife was taken to the Eastbourne stroke unit, after she recently had a TIA early in the morning, and she received excellent treatment and was back home 12 hours later.
Hi, Roy. Thanks for all your info - very helpful. I hear what you are saying about switching hospitals but our experience with the whole NHS catalogue of incompetence is too much. Decided to go private and. hopefully, get a competent second opinion.
My wife told our GP that she wanted a second opinion about her long standing stomach problems diagnosed at Kings, and she was given an appointment for one. The NHS has all the best consultants in the UK working for them anyway. All that paying money will do is allow you to jump the queue. Watch "This is Going to Hurt" on the BBC iPlayer. I speak as someone who paid £6500 for a private cataract op. and had the surgical director of Moorfields do it in his private clinic but I was taken into Moorfields for the operation and he used the NHS equipment and staff. I had inherited some money so I could afford to do that at that time.
Would I have gone private for my stroke? No, because I don't think I would have gotten any better treatment than I received at Eastbourne. I went from complete paralyses to walking again in 3 days.
Yup. Known exactly what you mean, Roy. Since the NHS queue is presently some 18 months, quite prepared to pay to jump it. Other factors of madam's health mean that a delay like that could be dangerous. Moreover, will do anything to avoid going to the fatal hellhole that is Worthing hospital.
Wonderful information here so I will just add an additional thought. Years ago when AFIB was first suspected in my case, I wore a holter monitor for a month and it identified that indeed I have AFIB. A month is a considerable time period but it worked for me because my events were infrequent at that time. But if that is not an option or interest, I will add to the others that I use a Kardia monitor and it is very helpful and generally accepted by medical professionals. I also wear an Apple Watch which would pick up on any incidents I might miss. It has its limitations (only identifies AFIB and not other irregular beats) and is costly. While I know if I am in AFIB, I like the extra protection of knowing that I will be alerted if that changes. I also agree with your concerns on the Apixaban dosage, and follow up is needed as you determined. Best of luck in figuring it out.
I am in the US. I would suggest your wife request a ZioPatch or Cam which is a patch you wear for two weeks. It records every single heartbeat and rhythm. It would be definitive for picking up A flutter or A fibrillation as well as other arrhythmias. Wearing it is very easy, you hardly know it on your chest. If she does indeed have AF, then another very good source of information is the website by Steve Ryan a-fib.com
I might be way off but if you can get someone to listen … I’d be looking to get checked for neuroendocrine cells causing the syndrome in turn behind heart and gut issues. Are you UK or USA? If near New York, Dr Jerome Zacks is a GP turned cardiologist who specialises in this area. He’s at 1120 Park AvenueNew York, NY 10128
Cheers, AussieHeart We are in the UK so your chap won't be of much use. Will, however, be looking into the neuroendocrine-cell issues. Had not heard about this before so, our heartfelt thanks for giving us the data
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