I was diagnosed with AF around four years ago now, by a cardiologist in a major teaching hospital. I was put on anticoagulants and referred back to my GP. The local surgery check my meds yearly and I have an annual blood test, but that’s it.
I am wondering whether I should ask to be referred back to see a cardiologist at my local hospital - my AF is perfectly stable and most of the time I don’t know I have it and I’m happy on APIXABAN.
But I just feel I should perhaps be seen again by a specialist to … I don’t know! - monitor the situation?
Does anyone else see a cardiologist regularly for an annual check up or even less frequently than that?
Just curious as to what other people do to manage their condition.
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AstroFish
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How very lucky you are! If you are asymptomatic and anticoagaulated for stroke prevention and your rate is well controlled you are in a pretty good place. No doubt your annual blood tests check liver, kidney function etc. and look for any changes which might suggest something sinister going on so you sound well covered.
I was diagnosed 7 years ago PAF. I Saw a Cardiolagist once and have never been called In for a yearly check ither. Episodes average 2 a year , pretty lucky I guess, seems I just have to get on with it .
I have the impression that if you’re doing OK and your symptoms and quality of life are OK, then they tend to pass you back to your GP. It’s only if there’s been any changes or new symptoms that they tend to refer you back, but usually your GP would be required to order some tests beforehand which they can do directly eg 24h ECG, 12 lead ECG, 24h BP etc. It’s really good that you’re doing OK and I hope you stay well.
Thank you. I’ve been absolutely fine as long as I stay off the caffeine and alcohol and too much sugar. It works for me. A friend who also has AF is seen annually by a cardiologist and this made me wonder whether this is the norm. I gather it isn’t having read a few replies. Thanks for your reply.
Your comments on what might be expected of a GP are very interesting. I was dumped by my cardiologist a few months ago out of the blue with no explanation. Just a "I don't want to see you again and I'm returning you to your GP ". I have an incomplete diagnosis, no care plan or prognosis. The response from my GP has been total silence.
Good luck with that Brother Thomas, GPs don't seem to respond to letters from Consultants anymore, they leave it up to the patient to make contact which is a nightmare in itself, hope all goes well.
That’s not good at all. A lot of people are having trouble getting proper GP appointments at the moment which isn’t helping. You have to keep prodding them unfortunately. GPs do have the remit to order many non-invasive tests including 24h ECG and echocardiograms and the way things are going, you probably wouldn’t get a re-referral without these anyway. I am half-expecting to be referred back to the GP after my next appointment but we’re pretty much expected to self manage once we’re diagnosed and have settled on medication or have had a successful ablation, or that sort of thing. It’s only if there are changes that might justify a re referral. It’s not ideal by any means.
Thanks so much for your kind comments. We have no alternative but to put up with such an appalling attitude. I'm OK with self management but knowing what it is that I'm managing would help. It would also help to have a prognosis and what I can do to help with the outcome.
GP annual checks, 6 monthly bloods - that’s pretty much it unless exacerbation of symptoms or test markers. No need to see a specialist if you are stable and ok on the meds you take.
I have a Pacemaker so regular checks via App on my phone + annual check.
Cardiologist twice a year, EP yearly..EKG and blood work 2x yearly..Echocardiagram yearly, and that's if all is stable. No wonder the cost of Healthcareis so high in the states..
My situation is almost identical to yours and I also wonder whether seeing a specialist would be beneficial.
I think I've decided this is as good as it can be and I need to get on with my new normal. However, it doesn't stop me worrying about everything and trying to link everything together, tiredness, migraines, strange feelings!
I have a Garmin watch but I think I might put it an a drawer for a while. Too much analysis.
Hi - I agree about the Garmin, I had to stop using an Apple Watch as it made me far more aware of my ectopic beats and AF bouts, this was before I was diagnosed. I am personally very sold on the link between a state of high anxiety and AF and now don’t monitor my heart rate if I can avoid it. Thanks for your reply - I’m pleased to know others are in a similar situation. 😊
Husband had AF for years and it was only every monitored by his GP. It happened after a heart attack. They fitted a stent and after post op checks he was not seen by a cardiologist again.
I pay £ 250 a year to see a cardiologist who saved my life 23 years ago. .If I suddenly feel unwell ( after Covid for example) I phone his secretary and get am appointment within the week. This does not often happen . I am under a cardio consultant at my local teaching hospital, he is fine but i hsve not seen him in 3 years, only a yearly telephone appointment. Not his fault, but as he says “you treat heart patients down the phone!”.
Key word from my cardiologist was to carry on with what I was on until my paroxysmal AF became "intrusive". I was never quite sure of that definition and it was down to me to initiate contact. 3 years later I saw GP to ask about a PIP to get me back in sinus for my episodes which happen every 6- 8 weeks, lasting up to 48 hrs each time. That was apparently deemed as intrusive, and things have happened quite quickly, now on waiting list for an ablation. Could or should it have happened sooner? My attitude is let the cake bake (my wife says I should be more proactive).
At least when you needed intervention it’s all progressed quickly. I think I’m like your wife - perhaps women are hard wired to act before the cake bakes?
Your Dr can always refer you to a Heart Specialist and she/he can ask for ECHO, ECG and have a 24-Heart monitor.
I understand you have no AF meds. Lucky you.
I would still be interested in your BP and H/Rate at rest.
I bought a BP macine a Microlife. The cuff is not as big as a O... also it takes smaller batteries.
Ask your Dr about your BP and AF H/R as the type of AF greatly depends whether meds are necessary.
I had a stroke in 2019 with AF and a carotid arteries showed a shadow on my thyroid. A Biopsy diagnosed me with Papillary Cancer.
It is presumed that the thyroid cancer caused Af which caused the stroke. I was on no meds. It was a worrying time with Johnson & Johnson messh was travelling to a vital organ and up here in Northland were not allowed to remove it.
On the day I got a letter from N/Shore hospital declining my operation and that I was out of their area, that I had the stroke at 2am.
No follow up.
I had the thyroidectomy and 12 right lymph nodules removed in Feb 2020 amongst the scare of COVID.
I would approach your Dr and take an interest in your condition. I would ask for tests to be done.
As you will find AF can change and I like you can't feel AF but symptoms when not controlled were excessive sweating, fatigue and loss of energy. But the ECHO shows that I have an abnormal structural changes to my heart.
I'm glad that you are interested in your health, The least meds you need for controlling are important.
It is advised that AFers should abstain from alcohol and smoking.
I pay privately to see my cardiologist once a year. I have been fine for 10 years with Lone PAF in remission. He tried to sign me off a couple of years ago but I said I value the visits for a check-up, update and to ask some new questions. I find this works well as a long relationship generates trust and more personal response, which could be more than valuable if things go wrong and you need an urgent solution.
This makes absolute sense. I’m minded to do the same - it would just help my reassurance levels which are quite important in anxiety avoidance. Thanks for this reply - I’ll speak to my GP.
I have identically the same situation and medication. My cardiologist said I would probably need a pacemaker at some stage and that was it. I've not had any problems, thankfully. A friend of mine has the same condition and he takes nothing. His attitude is Que Sera Sera. And he is fine too. So, we all just get on with life in our different ways, don't we?
I see an EP every 6 months. Then again when I have an episode I am very symptomatic with fast, irregular heart rate for up to 36 hours. On apixaban and sotalol, waiting for an ablation
About 12y since diagnosis. Asymptomatic, no meds yet. My cardio discharged me back to the GP early on. About 3 y later I went back and asked for another referral, same cardio said nope he's not worth operating on. So that's it. I've had the odd ECG since but mainly when my surgery think they should check.
Anxiety is a natural part of any heart problem and, yes, I think a regular check is a good idea, although I suspect a GP is just as capable given the right tests being performed. What is needed is a stethoscope, a12-lead ECG and an echocardiogram (or, if paid privately, a cardiac stress MRI). Armed with this, the GP will know whether a cardiologist's expertise is required.
Give the current state of the NHS and that you are generally well, the chances are you'll need t pay privately for the diagnostic tests. If so, expect to part with around £800 for the ECG / Echo and £1500 for the MRI.
Reassured that others are being treated the same as me. Had AF turn and went to A&E. Asked what I should do if ,I had another told to go back to A&E. Have been fine since and take Apixaban. Very reassured reading others experience and prefer the idea of staying calm at home and not going to A&E.Jenny
My AF has been controlled by Flecainide for over 9 years but I have a cardiologist appointment every 6 months (via phone since COVID) for a hospital ECG and occasional heart monitoring blood tests. As I also take Apixaban, my GP arranges a blood test annually for liver function.
I’m in permanent AF and have been for a few years now. I take apixaban, small dose of bisoprolol, statin and sertraline. I asked my GP to refer me to a cardiologist two months ago and I saw a AF nurse last week. The appointment lasted less than 10 minutes and I went away with a prescription for dioxin to take along with my other meds. She said there was nothing more she could do as I’ve had 3 ablations with no success. Oh well carry on regardless
When I was first diagnosed with PAF some 10 years ago, I was referred to a GP with special interest in cardiology. Had various tests and put on Warfarin and increased dosage of Diltiazem but as still happening, was then referred to EP cardiologist at hospital. He offered ablation immediately but I was unwilling at that stage so he did all manner of tests right up to angiogram and said heart all normal so probably caused by stress etc. He put me on Flecainide as pill in the pocket, 200mg then another 100mg if not gone within an hour. He told me that AF was progressive, would get worse year on year, eventually I would be in permanent AF and would need cardioversions and eventually it would kill me. I was so upset I cried. He was horrible but luckily he left and I had a new EP who was lovely. He reassured me and so I was able to calm down and accept the AF episodes. He reduced my Flecainide to 100mg. He also offered ablation and I said I would be willing to have this when the time came. At that point, my episodes were occurring between 9 months to a year and I had 12-18 month appointments. One year, I heard nothing and contacted the hospital appointments only to be told I had been discharged. I was very surprised as I had no knowledge of this. I contacted the EP's secretary and was given another appointment at which he told me that he would never discharge me all the while I was taking Flecainide so didn't know why I was told I had been discharged. I continued to see him, then came Covid and got telephone appointments. By December 2021, my episodes were becoming very frequent - every week so during my telephone appointment, I asked to go on the waiting list for an ablation. Was sent all the information I needed and given another telephone appointment with the arrhythmia nurse to go through all the questions I had. Finally had my ablation in August this year and although not totally AF free ( had 1 episode day after ablation and another after nearly 11 weeks) do not regret it and would have another if proves necessary. Having 24hr holter monitor next week and then hopefully follow-up appointment with EP to discuss next steps, if any. He doesn't want me to go back to Flecainide and I don't plan to even through I didn't have any issues with it. Good luck with your AF - just realise that it may not stay as it is and intervention may be necessary before it becomes permanent so really you should have a cardiologist I feel but every trust seems to work differently. I suspect it's a cost thing
I have paroxysmal A Fib plus microvascular angina. I was blue lighted to A&E with a fast AFib attack which left me in respiratory failure so I got into the hospital system that way (not to be recommended). Since then I've seen a consultant cardiologist first every six months and then every year. I'm due to see him next week and I've got a feeling he may suggest it's time to be cut off from the mother ship. I can always see him privately if I need to get back into the system, so I would be OK if he wants to say goodbye.
hi, I usually get an annual check with cardiologist. If I'm concerned I see my GP who arranges ECG at surgery and we take it from there. As BobD says blood tests should include a wide range, mine are annual with blood count, PSA, liver, kidney, cholesterol all included. All NHS local hospital or GP.
I think I understand your circumstances and I resonate with the dilemma.My experience was without a loop recorder I really had no idea exactly what my AFIB load was.
Thus without a proven analytical tool providing understanding of AFIB load EP decisions will be poorly informed.
My appreciation of AFIB load over time, proved to be way short of actual load.
Unless anything changes and you continue in this way then there is not necessarily a need to see the cardiologist again. If/When something does change then go to your GP and ask to be referred back.
I can only speak of my own experience. I experienced an ischemic stroke due to undiagnosed AF. In addition to Apixaban, I was prescribed beta blockers and Digoxin. Since my IA I have had two ablations (which seem successful) hence, they have stopped my beta blockers and I now attend my cardiology unit every six months.
Are you in the UK Astrofish? My EP saw me at diagnosis privately, then under the NHS 6 months later. He then discharged me back to the GP with a letter I should contact him directly if anything changes.
Thanks for the relevant reply. Yes, I am in the UK. I think if anything changes I’d be able to ask to be referred back and would definitely do that. I think I’m ok as I am but just was curious as to what other people do. Seemingly in the main it’s much the same as my experience. That is reassuring in itself.
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