I was diagnosed with atrial flutter/afib almost two years ago. Currently, it's paroxysmal, mostly presenting as flutter episodes lasting about 30 minutes, occurring roughly three times a year.
I understand atrial flutter/afib can sometimes progress to more frequent or longer episodes over time. I know the management approach may vary because the focus is on long-term control rather than immediate intervention, even with procedures like ablation (stroke prevention).
However, regardless of the number or severity of episodes, or whether I feel well, is it advisable to request regular follow-ups such as ambulatory ECG (holter monitor), echocardiogram, or cardiac stress tests annually or every two years? Paroxysmal flutter/afib can occur without noticeable symptoms making it challenging to monitor heart health without diagnostic tests.
Considering our strained healthcare system and long waitlists, is this realistic? I'm still relatively new to this condition and would appreciate some guidance. Should I wait until symptoms worsen [or intolerable) or advocate for more frequent follow-ups with cardiologist?
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FraserB
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"I understand atrial flutter/afib can sometimes progress to more frequent or longer episodes over time."
AFIB is almost always a progressive condition i.e. much more likely than "sometimes".
You should have tests when first diagnosed with AF to determine the condition of your heart and suitability for treatments options. You should also have follow up tests to monitor any changes, the type and frequency of which would depend on your circumstances - noting we're all different.
As for requesting follow up testing, I suppose it depends on your confidence in your doctor and the system he/she operates in i.e. whether you need to request depends on whether doctor is proactive in your treatment and how frequently or infrequently you see them. If you have concerns then you should discuss with your medical professional i.e. ask him/her about the treatment/monitoring strategy for the way forward given AF is almost always a progressive condition.
My circumstances:
I live in Australia and am under the care of a private cardiologist who I see annually - unless there's a reason to see him sooner. In the 5 years since being diagnosed he has sent me for various tests including a battery of tests when first diagnosed and a repeat echo cardiogram and stress test earlier this year. He also sent me for cardiac MRI after I had covid as it seemed to trigger a heightened level of episodes.
My recent tests were fine i.e. no indications of structural changes from my AF after 4-5 years since diagnosis, noting my AF is reasonably well controlled with medication. I have several episodes a year, which last for up to 14 hours before self-converting back to NSR. I consider my AF to be low burden - episodes are relatively short and although noticeable, do not prevent me from getting on doing whatever I was doing. Note: just because I haven't had any structural changes after 5 years doesn't mean others won't have changes in that timeframe. Again, we're all different.
I own several smart devices to use to monitor for episodes of AF, noting I generally feel it when I am having an AF episode and use my devices to confirm and record details for reporting to my cardiologist during annual checkup. If I believe my AF is getting worse then I will contact my cardiologist's office to see whether I should see him earlier than scheduled and/or whether I should modify my medication dosages.
I have confidence in my cardiologist but I only see him annually. He doesn't know what's happening with my AF between appointments so I have to be proactive about any issues that arise in the meantime and ensure I am able to give him a meaningful update on my AF experiences since I last saw him. His actions will, in part, be triggered by what I tell him. IMO, both parties need to be proactive about your treatment, including periodic testing and treatment strategy.
Great response..sounds like you're getting excellent care. If nothing else Frasier should have an echocardiagram to have to compare later and make sure there are no obvious structural problems..etheral
Your reply bean_counter has definitely helped with my question. I realize I do need to be more proactive since my GP, who would refer me again to the cardiologist, will not do anything unless consistency asked. I was first diagnosed in hospital emerg and referred directly to a cardiologist from there. This cardiologist did the very first and only tests, echo, stress, holter and prescribed the medications but since then nothing more. And thank you for the reminder that flutter/afib do progress. With my three episodes a year I do get complacent inbetween thinking it will always be this way.
"his actions will, in part, be triggered by what I tell him" I was planning to get a smart device and to have on record what has been happening. I wrote my post to see what others do because I definitely don't want to be left in a tail spin when the next flutter/afib episode goes on longer and happens more than what I've previously been use to.
I would contact your cardiologist or Electrophysiologist if you have one, and repeat your message above.I certainly think at least an echocardiogram 1 to 2 years apart gives indication of your AF progress on your heart ( if any of course)
If nhs wait seems hopelessly long consider a private route. I paid for a consultation with an EP initially, then he took me on as an nhs patient.
I also know someone who has booked a private clinic echocardiagram next week(250.00) only waited 4 days for appointment. Then you have a copy to use as you will.
Another echocardiogram in comparison to the first would be wise to get. Going the private route would also be a better option. I have thought of this, because as I mentioned in my above post, my GP can be difficult to move anything forward and is now only part time.
I would ask for an echo or cardiac MRI every two years to report on the condition of the ventricles and general heart health, if I were you. It seems to me, given the lack of understanding of the genesis of these heart arrhythmias, that such investigations, in an ideal world, would be the norm.
Thanks, Steve, for mentioning that having an echo or cardiac MRI every two years would be reasonable. From what I've read personally and from others' questions posted here, it's clear that there is still a lack of full medical understanding about heart arrhythmias. Presentations vary widely in complexity, and the progression of arrhythmias can lead doctors to practice more of an art than a science when it comes to medication.
Atrial fibrillation runs in my family, yet each of us experiences it differently. It's definitely a head scratcher. No wonder I'm asking what to do with heart tests going forward.
You can always ask but considering your ‘burden’ (minimal) I doubt whether you would get. I have much more frequent and longer episodes (up to a week at a time sometimes) and can’t remember when last I had an echocardiogram. I saw a cardiologist about six weeks ago because my ecg had changed and he reluctantly suggested I might need another echo but no sign of an appointment yet! I have to say that if you were offered the regular tests you suggest I would consider it very unfair ☺️
Reading your post Buffafly reminded me of my one and only experience with my first echocardiogram. The technician was a very friendly man, and I felt confident that he would be thorough. Partway through the echo, he asked why I was there. Being new to my own diagnosis and heart tests, I was puzzled as to why he would ask, then realized he did not have my records. I explained that I had been diagnosed with atrial flutter/afib confirmed by a cardiologist using a 12-lead ECG, with rate control and anticoagulant medication prescribed.
His demeanor then shifted to seriousness, and he remarked that it was good that I was getting the echo. He went on to mention that he performs hundreds of echos on patients who do not have ECG confirmation, and many of them show a normal echo result, effectively being, in his words, "rubber stamped" by cardiology without further follow-up. This made me think about those who walk away from tests thinking they are "okay," potentially missing early signs of heart failure or stroke.
I’m in exactly the same boat as you with infrequent half hour episodes of a racing heart (triggered when recovering from stress). It took me 30 years to get a diagnosis of the arrhythmia, and then only thanks to buying a Kardia to take a trace of an episode when it occurred. Once I had had an echocardiogram that showed my heart to be physically in good shape, I stopped bisoprolol (which slowed me down too much) and took an ACE-inhibitor for blood pressure instead (in agreement with cardiology). I’ve now been discharged back into the care of my GP, and NICE guidelines suggest an annual review of stroke and bleeding risk to assess the need for anticoagulation. Although aspirin monotherapy (75mg daily) is not recommended by NICE to mitigate stroke risk in patients with AF (and therefore not prescribed), I currently prefer antiplatelet to anticoagulant therapy, but will review that each year in light of developments (and age). My GP surgery runs an annual stroke review in any event, and I make sure I exercise regularly, keep blood pressure down and take a statin for cholesterol control.
Only you can judge what course you wish to follow for stroke prevention. My own view (not contradicted by cardiology) was that infrequent 30 minute episodes of PAF at 200bpm were unlikely to lead to clot formation in the heart, though I’m as keen as anyone to avoid a stroke. I don’t personally see the need for regular EchoCardiograms to check my heart structure and operation.
That is interesting to read. Like me, you experience infrequent episodes. I was prescribed diltiazem, a calcium channel blocker (CCB). Its similarity to a beta-blocker (BB) such as bisoprolol where it can make me feel a bit 'wasted,' and I'm taking the lowest dose available! You mentioned how the bisoprolol was switched to an ACE inhibitor. This is informative because I've always told my GP that if I experience more frequent episodes, I don't think I could handle an increase in my CCB medication. I also think that my blood pressure being lowered has kept my episodes down. And the switch to an antiplatelet. That does get away from the one size fits all of an anticoagulant especially regarding infrequent episodes. There is currently an ongoing study to determine if anticoagulant can be given after a verified infrequent AF episode and not continuously. Unfortunately it still needs time for results.
Neurologists prescribe antiplatelets after a suspected TIA to prevent clot formation in the vessels serving the brain. Once you’re classified to AF, cardiologists prescribe anticoagulants, so far as I can see in order to guard against clot formation in the heart. The theory that a clot might form and then travel to the brain seems a reasonable hypothesis, but apparently the correlation between AF and stroke doesn’t prove the theory. Unfortunately, once you’re in the AF pigeonhole - even as an outlier like us - NICE guidelines in the UK constrain the physician’s approach to prescribing. So if you want to take aspirin, you need to buy it OTC, and you can’t get any other antiplatelet.
It was my decision to stop the beta blocker because I saw no advantage in rate control, which took my average bpm below 80 and my resting heart rate down into the 40s. It kept my occasional AF episodes to 180bpm instead of 200bpm, but that didn’t have any benefit. I now recognise that my AF occurs during recovery if I raise my heart rate during exercise above 150bpm, so I moderate my exercise accordingly. Have had just one 5 minute AF episode since changing my regime in April.
I was diagnosed just a little before you in April 22, but had symptoms before this. My burden is higher than yours (see my Bio), but I still had to "chase" my hard-to-contact GP to arrange a follow up second echocardiogram after 2 years. I was fortunate in this request as my first echo reported an Atrial Septal Aneurysm (ASA) in passing, and I was appropriately able to argue that it was important to at least monitor it's potential change (size, shape and stroke risk) over 2 years (along with the usual echocardiogram heart measurements). I have no access to either cardiologist or EP. Never seen either in person, and this is not uncommon.
You are not alone in your concerns, and AF patients, according to Forum reports, are receiving greatly varying assistance re AF from their GPs. But don't give up asking, and be as creative as possible with your realistic concerns. And good luck.
I would believe that an Atrial Septal Aneurysm would require further tests, so reading that you had to argue to receive monitoring it makes me wonder about advocating for myself to get another echo.
During my first and only meeting with a cardiologist, who was running an hour late (which I didn't mind), it was the brief 15-minute slot that left me with more unanswered questions. They encounter many patients with varying attitudes and levels of knowledge about their condition, and the cardiologist first started to speak to me as if I didn't understand the basics . I wanted to respond that I've taken the 101 class, but I refrained, knowing it would come off as arrogant. And I also recalled friends with other medical conditions who said bluntly they don't want to know more because there is nothing that can be done.
Glancing at my watch and considering my unanswered questions, I politely pushed the discussion forward. The cardiologist was understanding, and his final words were if you experience more and more episodes, let me know, and I'll refer you to an "electric" doctor. That's a positive sign, BUT in my situation, I would first need my GP to provide a referral –that's the biggest barrier. As my GP said to me directly, they're the 'gatekeeper,' – which has me contemplating a private consult.
Yes, a private consultation, if that's what you feel will help.
Weirdly, the Arrhythmia Nurse I did see (at my Cardiology appt), after displaying my obvious confusion about a suitable way forward for my newly diagnosed AF (also a story of missed questions and unremembered details), did ask if I wanted to see an EP. But I was thinking an EP's time was a very limited resource and better reserved for patients with more urgent needs, and also, having no idea then of what I would ask such a specialist anyway, I declined the offer. Doh! I didn't even manage to get details from the Arrhythmia Nurse of dosages or frequency for the PIP flecainide and PIP bisoprolol I was then prescribed. After that fiasco, not untypical I'm sure, I was on my own and somewhat dependant on this Forum to accumulate the information I felt applied to my individual AF circumstances. In other words, I knew I had to be my own best advocate.
Addendum: Re the ASA, after that second echocardiogram, I think I concluded that no-one was fussing about it after that first echocardiogram because in the second echo it was found to be quite small and not considered actionable by the reviewing cardiologist (after both the first and second echoes). Mind you, my GP didn't know anything at all about my ASA after that first echo, so unless I had chased it, I'm sure no second echo would have followed. Not until my symptoms had deteriorated significantly. A not uncommon situation.
Your mentioning if you had not chased it, your symptoms would have deteriorated, is very true. I agree that we have to be our own best advocate. A combination of advocacy and also self-education helps in the daunting task of getting through the hurdles. And maybe add to that plain luck in meeting the right (medical) person in the the right place and time.
Thanks for your reply that is mainly supporting my thoughts.
However, when you wrote "Your mentioning if you had not chased it, your symptoms would have deteriorated, is very true" is not what I wrote or intended. I actually said my GP treatment wouldn't have changed "until my symptoms had deteriorated significantly" enough to be of concern to my GP. Not that it was inevitable that my "symptoms would have deteriorated" because I hadn't chased my GP. I wouldn't want to exclude my symptoms not changing much over many years, although a periodic non-invasive transthoracic echocardiogram is certainly desirable from my point of view.
I'm sure you didn't mean this misunderstanding. No worries.
Hi, when I was first diagnosed with AF I saw a cardio consultant and then for every year afterwards I had an annual check up at the hospital, and episodes of AF where dealt with by my GP and if necessary my hospital check up was advanced. This was all NHS from 2015 to 2020. It may not happen now but you should expect /ask for something similar or better.
Thanks 2learn describing your experience. I would agree with you that periodic monitoring and screening tests should be recommended.
I'm grateful to read the varied responses here I have had to my question. It has helped. So much goes into getting access for ongoing tests and care. From the availability of healthcare resources (where you live/country), risk factors or severity of AF, individual doctor's judgements and even possible bias due to lack of information.
I will definitely be more proactive and also on my part educate myself more on the condition plus most importantly enjoy life and pick my battles wisely.
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