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is it normal not to see a cardiologist with AF?

TickityBoo profile image
10 Replies

Sorry, folks, I keep coming back with more questions!

8 weeks ago I ended up in A&E with a self limiting episode of AF. I think it lasted about 45 mins. It was the weekend and I saw the A&E docotor and the on call consultant from the medical side (who wasn’t a cardiologist). I was started on Bisoprolol 5mg and Edoxaban 60mg and told to see my GP and discharged without follow up. To be fair, though GP hasn’t actually seen me, via econsult he referred me for an echo and a 24 ECG (both apparently fine) and practice nurse did a 24 hour BP and a couple of 12 lead ECGs.

Is this all normal these days? It feels to me as if I’ve had this big life changing diagnosis with heavy duty medication for life yet it all feels very casual. I’ve been left not sure even what I do with further events, what should trigger intervention, when I should worry about ectopics etc etc. Also my last ECG had atrial flutter printed on it (by the machine) but it was signed off manually as sinus which has also got me in a flap. If I feel as much as a little bump in my chest I’m worrying about it now

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TickityBoo
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10 Replies
Teresa156 profile image
Teresa156

Hi TickityBoo,

I’ve just had a quick read of your previous couple of posts and see you were diagnosed with Afib a few weeks ago and since then have had various tests including an echo and ECGs and have had the results. You were then discharged from cardiology, you mentioned, with no follow up. A cardiologist would have viewed and written up your results.

Did they ( a cardiologist) actually say you had been discharged?

Everything you’ve said above about what you’ve had so far, is I’m afraid pretty normal unfortunately. Yes, it does feel like a big life changing thing and yes, it’s the heart and you’d think there was more but with the NHS now we are left to ‘get on with it’ if generally they can’t find very much going on.

They always say that AF in itself isn’t life threatening. Ideally ( and if you’d known) you could have pushed for a follow up, but you weren’t to know and it was probably all a bit much. However, saying that, I should have had a follow up in November and it didn’t happen so you just end up having to chase and chase these days ( and usually end up getting nowhere).

You could try calling the cardiologist’s secretary ( name will be in letter) if you have a problem. Did they assign you an arrythmia nurse? If not ask the cardiologist secretary about those…they can sometimes help with questions on the phone. If you do run into any heart problems and need to be seen quickly you can also always go private which some of us resort to as well ( approx £200 for a consultation)

I just read your last line about your flutter and then being signed off as sinus. This might have been because you have since gone back into sinus after reverting back to normal rythm? So you are paroxysmal ? This might be what they are saying do you think?

Good luck,

Teresa

Jalia profile image
Jalia

I think Teresa156 has pretty much said it all. I understand how you are feeling . You are on anticoagulants and your Echo presumably showed nothing untoward so that is good.

If you are able, possibly a private consultation may be the way forward to reassure and answer your questions and hopefully put your mind at rest.

BobD profile image
BobDVolunteer

The most important things to understand are a) AF won't kill you and b) any and all treatment (apart from anticoagulation for stroke prevention) is only about quality of life and symptom control .

It is also important to accept that AF is a chronic condition not an accident nor emergency so treatment should be via your GP or cardiologist UNLESS you have chest pain or feel faint or are passing out. In that case call emergency services.

Here in UK, NICE guidlines are that if your GP is unable to satisfactorily control your symptoms in a month then you can demand to be seen by an arrhythmia specialist who could be a cardiologist or even an arrhythmia nurse attached to an electrophysiology team. Electrophsyologists (EPs) are the cardiac electricians to the normal cardiolgist's plumber.

The reality, especially since Covid, is that the latter may take some time so many people will pay privately for an initial consultation with an EP.

Be aware that AF is a long journey but at least here you have some great travelling companions.

The only thing I would add to the helpful replies already received is that if episodes recur more frequently, you consider buying a monitor so that you can keep a record of episodes. One of the problems with Paroxysmal AF (the type which comes and goes) is that it rarely happens when you see a GP or specialist and trips to A&E soon become a bit un-productive.

There are several types of monitor available but I invested around £100 in a single lead Kardia Mobile several years ago. Almost all medics will accept the reports as a record of your episodes. Check out via Google and they are frequently advertised on the TV. As long as they don’t become addictive, they can be extremely helpful……..

javo123j profile image
javo123j

I've had known afib for over 5 years and also have heart failure and I've never met my cardiologist. I know he tells the nurse what treatment to give but as the other answers say this can be normal. I have now been discharged. I have asked to be referred to an EP but I have heard nothing for 6 months. I think over time you get to accept the condition and that it is probably never going to go away.

Engineer46 profile image
Engineer46

Hello TickityBoo,

You've had several helpful responses here recently but I can offer a further few observations from someone who has permanent but symptom-free AF and was prescribed Apixaban (anticoagulant) and Bisoprolol (beta-blocker). Edoxaban is similar to Apixaban but is preferred today because it is taken once a day instead of twice a day (Edoxaban lasts longer in the bloodstream).

To answer your question - it is certainly common for someone who isn't suffering any AF symptoms not to see a cardiologist.

It is also common practice for someone who has suffered an episode of AF to be offered an anticoagulant to reduce clotting risk and a beta-blocker to limit the heart rate if it is high. Unfortunately, in clinical situations (eg in hospital) it is natural to be anxious and therefore have a high heart rate and high blood pressure and be prescribed a beta-blocker!

You appear to have Paroxysmal AF and only one episode so far (at least only one that you noticed). Stroke risk is linked to the stagnation of blood in the atria during periods of atrial fibrillation, so if you are in sinus rhythm the majority of the time your stroke risk due to AF is probably extremely low. This means that there is little risk in stopping the Edoxaban for several days before your hip surgery, in fact it would be worth discussing with your GP whether you need to take an anticoagulant at all, given the single short episode of AF that you have so far experienced.

Your GP will probably use the "Cha2ds2-vasc" online risk calculator to estimate your AF stroke risk and, unless you have other risk factors such as diabetes, you will be told that you have a stroke risk of about 2% per year (female, over 65). Try the calculator yourself:

mdcalc.com/calc/801/cha2ds2...

As others have said, the Bisoprolol dose does appear higher than many of us with permanent AF require and may be limiting your heart rate more than is necessary. I'm taking 1.25mg per day and it is sufficient to keep my resting heart rate below 100 (usually between 80 and 90 bpm).

When I was first diagnosed with AF it was already permanent but, as I was not suffering any symptoms, no interventions (ablation or cardioversion) were proposed. I was prescribed Apixaban and 1.25mg Bisoprolol (the smallest dose) and I told my GP that I was going to take the Apixaban for a few weeks before starting the Bisoprolol - that way, if there were any side effects I would know which drug was the culprit. I didn't suffer any side effects from either drug.

I would discuss your prescription with your GP. Given the circumstances that you have outlined and the unwanted side effects you are suffering, it would seem reasonable to start again: stop taking the drugs for a week and check your resting BP and HR at home. Depending upon the results, ask your GP whether you need to take any Bisoprolol or whether you should reduce the dose. Whatever drug regime you agree with your GP (and it's your decision), start with one drug and only add the second after you are happy that you don't have side effects with the first.

So please stop worrying and have a discussion with your GP. As a tip, I've found that the best way to communicate with my GP is to send an email to the practice secretary asking for it to be forwarded to my GP. Ask your questions in the email and you should get a reply from your GP in a few days. That way, everything is in writing and you don't come away from a face to face appointment remembering everything you forgot to say!

Best wishes,

Paul

wilsond profile image
wilsond

Its a bit of a lottery to be honest! My friend,in the same village but different GP surgery,has never met or spoken to her cardiologist,even after having cardioversion. The Cardiac Nurse ( not designated Arrthymia specialist nurse) even prescribed Amiadarone for her. It was me who told friend to query it ,as she is on thyroid meds.Friend is more trusting of drs than me and quite happy to accept status quo.

I have been described as ' forthright' ie bolshie.

I was referred to a cardiologist but had a 15 week wait. I was very symptomatic and trying to work a demanding job etc.

Like others have said,I paid to see an EP privately,and transferred to nhs list.

I can contact him directly through Kadia,email,and through his secretary.

I think I would want to talk to someone with specialist knowledge,especially as you are a new member of the Crazy Heart club. Knowledge is power and you will feel more confident of living with AF.

Gps do not necessarily have cardio experience and make mistakes ,as mine did recently.

As others have said,AF is a damn nuisance but can be tamed!.

This forum is excellent.

Best wishes xxx

mjames1 profile image
mjames1

"It feels to me as if I’ve had this big life changing diagnosis with heavy duty medication for life yet it all feels very casual. "

------------------------

It sure does. And not only "casual", but the meds you are on may or not even be necessary, long term, if that's what the plan is. Try and get to see at least a cardiologist well versed in afib and equally important, start educating yourself. This is a great place but the opinions are from non professionals. Some of the advice is excellent, some is plain wrong. Very hard to tell the difference if this is new to you, because most of us sound like we know what we're talking about which often isn't the case :) I include myself here. So always cross check everything you read here with other sources, be it your doctor and/or medical literature. Especially before making an important decision or get lulled into inaction.

Jim

secondtry profile image
secondtry

Suggest you book a private appointment with a cardiologist (around £300) and take it from there.

7473 profile image
7473

Hi Tickety Boo,Lots of advice already given after much experience. I was on Bisoporodol for eight months and felt dreadful on it.

Did to an error between consultant and surgery this was,nt stopped as soon as planned. During this period my pulse rate seldom reached Sixty which was why I felt dreadful. Once stopped I. Felt better but my pulse rate has not improved Bradycardia has been my norm for many years so I just accept it.. Proximal A F appears my norm with passing symptoms but no real problems and relaxation the best controller. My EP has said if I have no further problems this spring he will discharge me back to my GP.

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