Hello everyone, I had a phone call this morning from a GP at the medical centre I am registered with. Apparently I was diagnosed with Atrial fibrillation in 2007, I was the last to know, finding out today, but having had a number of periods of tachycardia over the past few years, I had a week long monitor in March this year. Today I am now told I don't have AF anymore, which is good, what's better is I didn't have any medication for the past 14 years for the AF I don't have. I really despair over the quality of the GPs and consultants in the health service. There are so so many mistakes made by them, and many made concerning myself and my wife, and family, is it any wonder I now have zero trust in any of them.
AF or not AF : Hello everyone, I had a... - Atrial Fibrillati...
AF or not AF
Written by
jointpain
To view profiles and participate in discussions please or .
41 Replies
•
Wow, that's really quite astounding isn't it! Yes, thank goodness you weren't taking pills all those years. Were your periods of tachycardia short when you used to have them?
The tachycardia episodes varied from around 90 minutes to twelve hours. I have been taking a low dose aspirin for a few years, but that was due to being told by nurses that I had "thick" blood, which would often clot before being examined for whatever it was sent away for.
Its astounding. My husband was diagnosed with left ventricular dysfunction twenty years ago by his GP who said from tests he had when he was 23 years old it showed this condition but he was never told about it in a and e or followed up. She only found it from looking at old cardiac results when he presented with extremely high blood pressure.
He has been treated with medication ever since on repeat. Earlier this year he asked his current GP about the LVD and she was surprised he hadnt been followed up over this many years so sent him for and ecg etc. She reported back that he had never had this condition in the first place. He is 60 next year and been labouring under the illusion of having LVD all this time.
Its good news, if its correct, who knows who you can trust. Such vast disparity in diagnosis could have been critical.
I'm 65 tomorrow, when I was twenty, the vascular surgeon in the RAF told me I would be in a wheelchair by the time I was thirty five due to my venous insufficiency, and also tried to have me medically discharged. I still have my legs and my varicose veins, and for the past thirty years my "stockings"
It beggars belief. I didn't find out that my mother in law , who died unexpectedly from a brain haemorrhage , had AF, was taking Amiodarone but no anticoagulant, only aspirin. I found this out from the post mortem report. I'm sure she was completely unaware of this because she used to listen to my tales of woe over AF and hospital admissions.
Truly astounding stories. I have had experience of excellent doctors and nurses who have been sympathetic, listened and supported me and unfortunately - indifferent, arrogant and downright dangerous doctors and nurses.
But how do you tell the difference? My strategy has been to research, to ask probing questions and get second opinions and to self monitor and check all my blood tests and other tests and find out what they mean.
I’ve always believed that I am the expert on me and the doctors on conditions and after a similar experience to the stories above when an orthopaedic consultant told me that I need to see a psychiatrist after a RTA which resulted in a neck injury because he thought I was ‘unduly emotional’ because I burst into tears after he said I would be riddled with arthritis and in a neck brace within 10 years with a fixed spine. The tears were of rage that he could make such a prognosis without examining me nor looking, as far as I know, at my x-rays.
Needless to say I neither saw a psychiatrist nor am I in a neck brace, although I did have to wear one for a while a few years ago when Myasthenia was first diagnosed but that was for muscle weakness.
Bravo 👏
PS - I don’t know whether or not this is true but I recall reading a story in the news a few years ago that hospital deaths were seen to decrease over week-ends. It was posed that the explanation could well be that was because consultants didn’t work week-ends. That was some years ago now and practices have changed.
Not to rain on the parade but I went 12 months between boughts of PAF. It was never caught on 2 - 10 day HR monitors. Diagnosing PAF can be a challenge. It took 2 years to get a PAF diagnosis after having a stroke which was classified initially as a stroke of unknown origin until they caught the PAF on a EKG. Now with Alivecor EKG home recorders it is easier to catch.If you had the original EKG print out it would tell the story.
If that is not the case congratulations and three cheers.
A cardiologist once told me that some cardiologists choose not to tell their patients they have AF as a clinical judgement because it has no cure and why worry people when worry would only exacerbate it? They alluded that this had been fairly common pratice, not so much now, but that it still happens. I was amazed.My experience is more of being dismissed/ fobbed off or even blamed, especially when I was younger. I'm now with a great cardiologist and nursing team and feel privileged. I wish that was everyone's experience.
I can understand why I wasn't told, if there is no cure. I will ask how I was diagnosed in 2007 and on what evidence. It may be too late as the Dr I spoke to wanted to delete the diagnosis off my records. At the time back in 2007 I was experiencing many faints on getting vertical, I put it down to a very low heart rate at rest of 30bpm or below. After my first tachycardia episode my resting BPM rose to 40 though sometimes goes to 38. I don't get the faints when getting up anymore. So maybe my heart fixed itself? Always had low BP too. But that has risen to 120/78 at rest.Thank you all for your answers.
I’m sorry I can’t understand why you weren’t told. Doctor’s do not have the right to withhold information about your health. May I suggest that the faints (syncope) & low BP and heart rate may have triggered the AF - that was certainly my pattern which was caused by Dysautomonia - dysfunction of the Autonomic Nervous System.
There is more information about Dysautomnia these days but many doctors really don’t understand it or even know about it. I was admitted to Acute Cardiac Ward with it but as I was waiting for admission nearly every doctor in the hospital came down to witness it - all saying “Never seen that before” and walked away. I felt like the prize specimen!
I think @SteelHeart posted a link recently?
Considering the possible consequences of Afib, including stroke and heart remodeling, it seemsto me these docs should be disciplined . I can't imagine lying to patients about their conditions is tolerated.
When I was first diagnosed with PAF, I asked the Cardio if it was fatal - his reply was 'It is something you die with not from' and I was prescribed the default Beta Blocker and anti-coagulant!
Our GP now has an online system where we can see all our records and helps us understand and research tests on us. It also helps spot mistakes or information not reported to us. If your surgery offers it its well worth signing up.
That's amazing. It's a shame, in a way, that this example stands out as progressive and unique when this could be a helpful way for all practices to model themselves. Thanks for sharing.
I should also add that the team I'm with now, including the consultant, treat me as a part of the team in making decisions about my health. Its a collaborative process. It's a very different experience to one's I've had in the past where information is withheld and decisions made without demonstrating the rationale.
I can also access my medical records & test results through the NHS App. Many surgeries have now signed up to this.
I also just spent an hour signing up to our local hospital’s new on-line system MyCare so can access information the hospital holds on me, change appointments and avoid the wait for discharge papers after admission. I can record my end of life wishes, details of people who hold Power of Attorney and many other pieces of information which is then available to any approved hospital member of staff. The idea is to reduce the amount of time spent by doctors and nurses on paperwork - which often gets lost as I know to my cost. It remains to be seen how affective this system is as it’s still early doors but I am hopeful.
I think all UK surgeries are heading this way, albeit each at their own pace. Its also linked to the NHS app on my phone so I can see an overview including appointments, allergies, and test results. Our surgery is far from perfect but at least I can see they are trying to embrace IT as an additional link to their patients.
👍👍👍
We have it and it is suprising what notes are not what I actually said. For example I got upset when told the GP dealing with my lost referral for A change in my AF. What I said this has being going on so long I sometimes feels as if I should put myself to bed & stay there as sometimes it is so hard to get through days when my AF is bad. This was Interpreted as I was going to go to bed & make sure I didn't get up again. I could be stuck with permanent notes possibly Suicidal.However the system is good to see referrals & consultants letters ,test results etc.
I became tearful in front of the doctor whilst waiting for tests to find out whether I had an insulinoma or pheochromocytoma tumour. Later I found recorded in my records after that visit 'anxious type'.
You had a right to be anxious
I thought so too! I still get cross when I think about it.
Absolutely appalling, you should make formal complaint
The diagnostic processes may have changed over the years, although I don't really think so for AF.
An ECG is all that is required to clearly show that AF is present, it's not something that can be easily missed or mistaken for something else. I am frankly astonished if this is the case.
I can only assumed it was a mistake or someone had a bad day.
My own experience of the NHS has been largely positive, but I am naturally inquisitive and tend to research any condition I suffer from.
Always ask questions...
Good luck
AF is, and has been for many decades, very easy to diagnose from ECG print out, on which the very distinctive P wave is absent. I therefore doubt very much that you were misdiagnosed.
Furthermore it is not possible to look at a recent ECG result and declare the patient free of AF; only that they were free of AF at the time of monitoring.
It's certainly good news that you are apparently free of AF having had it in the past, as it means a condition thought to be progressive does not appear to have progressed in your case.
However there is a possibility that you have paroxysmal (intermittent) AF which is infrequent or that you are unaware of (many sufferers are asymptomatic) or both.
I personally would advise that you think about buying a Kardia home monitor or similar just to keep an eye on things, as AF may increase your risk of stroke as you get older or develop other conditions and that risk can be minimised using anti-coagulants.
Many on this forum suspect that such devices tend to become an obsession with some sufferers, whose fixation with self-measurement succeeds only in making them more uptight and therefore more prone to the AF they're trying to combat.
But used sparingly, perhaps when you have symptoms or feel unwell, it could help clear up the confusion which led to your post.
Good luck!
My gosh … reading through these comments l now understand the meaning of socialized medicine. I live in the US … you would not believe the SUPERLATIVE medical care we experience. Although, with this new and exceedingly liberal administration, l wonder what is going to happen here. I think that we are heading for a socialist society. Saddens me.
Sadly, not all Americans experience superlative care; some experience practically no care at all.
Really … where do those people live? Our cardiologists and staff are wonderful … l never have to wait for a needed procedure. I am very sorry to hear about this. When we are visiting our home in Europe, we pay for medical care …
I think it has more to do with the level of insurance they have. They struggle to get authorisation for procedures, are limited to which doctors they can have and pay hugely inflated costs for necessary medication. I feel very sorry for them.
Here, in the UK treatment is not based upon a person's ability to pay, thankfully.
They live in your town, though you might not know them. I have great insurance but I have a great job. This is NOT the case for many middle-income and working poor people in the US whose employers refuse or are unable to afford to insure their workers. It’s not the case for many small business owners who can only afford to insure themselves against catastrophic illness or accidents, nor for anyone not fully employed.
Always insist on knowing the detail and get a copy of your ecg(s) and seek to understand them. Diagnoses are not always black & white - i did an ecg treadmill stress test, nurse said she though it was ok, cardiologist said af just started, senior cardiologist said not quite af as not arrhythmic for long enough period. I think none of them were wrong. I bought a Kardia 6L so I can do my own ecg’s, recognising I’m not trained to analyse them but gaining a layman’s understanding all the same. I’ve found the entire NHS team to be highly professional. Above all else the Kardia enables me to retain the hard evidence. I also have the ecg trace from the first incident (500 miles east of Moscow, cardiac intensive care there was quite an experience).
Like you I know longer have any faith in GPs or consultants. They do not want to see you listen to your concerns. Recently my Husband who was in remission from multiple myeloma who had not seen his consultant for 18months who went every month for blood test was told his results were being checked not just by one Doctor but many. This was not the case his MM is back and he is now having to go through intense chemo. I had a heart attack in November 2020had not seen a consultant until a trip to A&E where a doctor said I needed to see him. I would like to send my admiration to all the A&E staff who in my opinion are running the NHS. Well done.
Not what you're looking for?
You may also like...
AF or not AF
After having two possibly three TIA`s I was told by stroke doctor that I have paroxysmal AF (23...
Ablation or not for Persistent AF?
Hi,
I know this has been asked many times, but from my perspective it is a difficult decision. I am...
AF and IBS
Hi everyone, as a long time with AF lady it has over the past year progressed and flecainide no...
AF related or not?
When we have AF we often have complaints that impact our condition, I know I do. So how do you...
AF or not?
I had more or less my first episode of AF *during the day* yesterday- it only lasted for about 15...
Sudden increase in AF episodes - scared and anxious
AF and anxiety
