I have had AF I believe for several years but was only diagnosed a couple of years ago last year my AF became permanent
I am on bisoprolol ramipril and apaxiban
Once I got used to the medication the breathlessness and lack of energy improved as did my resting heart rate and lowered blood pressure
In many ways I’m much better since going permanent
But I wonder if I should seek a referral to a cardiologist or ep as I’ve only seen my gp
As things stand do I need a referral but will the symptoms worsen over time
I’m already experiencing kidney problems which gp thought was caused by ramipril but changing to a channel blocker didn’t improve it so he changed me back
Could it be the bisoprolol or apaxiban
He only monitors it and it improved then slipped
Anyway should I carry on as I feel much better or seek a referral
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Not an easy question to answer particularly as we are all different and AF can effect folk in many different ways. We commonly hear that permanent AF tends to be less problematic especially when heart rate is well controlled and blood pressure is good, as this tends to prevent the condition from deteriorating, but it’s impossible to say that your condition will not get worse over time. You say you are in permanent AF which if is the case, then there seems little point in seeking a referral to an EP as other treatments options such as cardioversion, ablation or rhythm medication are not going to achieve very much. However, symptoms such as breathlessness are often associated with Bisoprolol and there are alternative beta blockers which many here find better. Generally, GP’s are limited to prescribing Bisoprolol so if you wanted to consider alternatives, a referral could be helpful. I have no experience of ramipril but it is unlikely Apixaban will be causing symptoms but it is important that your liver and kidney function is within acceptable levels as they are important for enabling Apixaban to leave your system.
Thanks for your reply my pondering regarding a referral was about the bisoprolol though I seem to be much better on it now but mainly the possibility of it worsening to be fair to my gp he says the rate control is working and my blood pressure is normal now so it shouldn’t worsen much
I’ve given up constantly checking it as Bob says it was becoming an obsession and doing more harm than good
I suppose as things are steady and I’m not suffering like some I should wait
No problem, to some degree age plays a part here and the other thing which occurs to me is that without having a cardioversion, how do you know if you are in permanent AF as opposed to persistent. Paul makes a valid point but the problem is you could get “bounced” (forgive the pun) into pursuing a course of treatment which may or may not improve your current symptoms. If you are in permanent AF, these treatments will not work.
Ask for a referral. Your history similar to mine, can take a while to get the meds right. In my case I had an ablation a couple of weeks ago, am back in sinus rhythm and now off all meds except anti coagulants and feeling much better.
My answer would be to seek a referral 100%. My situation sounds similar to yours (in a few ways) and I am back in sinus and have been for a fair bit of time. I'm not saying the same will happen with you BUT get the balling rolling and ask your GP to refer you.
You have nothing to lose and (maybe ) everything to gain.
If you have never been cardioverted and failed to go back into Normal Sinus Rhythm then you don't know it is permanent it is only permanent if you cannot be returned to normal sinus rhythm - even if it is for only a matter of weeks i think I am right in saying this is persistent AF - all Ps and I get mixed up but permanent is where you cannot be put back into Normal Sinus Rhythm. Definitely get a refferral to see an EP.
Definitely worth a referral to a cardiologist and then an EP. I feel so much better after doing that with two CV’s then ablation. The lack of energy and breathlessness have gone. I still take 5mg Bisoprolol and apixaban but have no side effects. I know AF can return but keep my fingers crossed.
Good luck on your AF journey.
I would ask to be referred since-as Paul Bounce has already pointed out-there is nothing to lose but, possibly, a great deal to gain by following this course. The EP would have greater expertise in this area and might be able to adjust/change medication more effectively.
If no joy,write into the surgery or email . Make sure you date it!
I agree with others . Gps are just that General Practitioners not specialists .I'm a little surprised that you have been diagnosed with AF for a while and no referral . Are you anticoagulated?
Nothing to lose by asking for referral and you may wonder for ever if you should have pushed for it !
Also it cost me 150.00 to initially see an EP and then went on his NHS list,just an idea if you get nowhere with GP.
I understand that the definition of persistent and permenent AF is 1) , persistent is AF that's continuing over a period of time and 2) Permenent AF is when YOU and your EP agree and decide not to try and revert you back to NSR irrespective of whether or not you can be reverted back. I have been in Permenent AF by choice for over four years. Cheers Roy
I have permanent AF. Diagnosed in 2014, I was never told what sort of AF I had and was put on meds. I knew little about AF and only when I joined this forum did I begin to understand it better.
I have asked the cardio at my local hospital for a referral to an EP, that was refused, I have enquired about a cardioversion, I was told not necessary. Eventually 3 years later I went privately to see an EP.
He told me I do have permanent AF and only option is meds or pace and ablate. I will never know if in 2014 I had PAF or persistant AF and whether something could have been done.
My current meds are Nebivolol, Diltiazem, Ramipril and Rivaroxaban. I am on Ramipril because I also have mild heart failure.
I do think you need to see a EP to get a clear picture, can you go privately.
Dear Cassie, Just read your post and wanted to say how sorry I am that you weren’t properly informed back in 2014.
I’m so grateful for this forum because I’m learning so much for all the different experiences here.
My AFib road is a new one, but when my GP said “Most people just live with it” I was thinking “Not if I can help it!”
I’m hoping and praying that my cardioversion will work, but I know that sometimes it doesn’t and sometimes it does and then flips back into AFib again.
The meds have brought my blood pressure down to an ok level, but my resting pulse is still too high! (Last night it was 136)
Again I’m sorry and also about your mild heart failure.
What planet does your GP come from? He should live with it if he want his patient to live with it. That attitude from my GP cost me three ablations, a remodelled and fibrotic heart and an extensively ablated one. Plus, I'll probably always be on rhythm meds. All that degree of heart deterioration could have been avoided if my GP had been on the ball and referred me to an electrophysiologist when first diagnosed. I would suggest that if your GP does not change his attitude, change GP.
Dear Cassie, I’ve just been doing some reading up! ( Flapjack has put on lots of useful information on this site) and wanted to ask you when your heart failure began?
I ask because the information would suggest that if it also started in 2014 then this could explain how you were treated.
Hi - Thanks for your reply. I have read most of Flapjacks posts over the six years I have been on this forum - I think he and I joined about the same time. In 2014 when I was in hospital it was because of Heart Failure (although I was not told this only that I had AF, only when I read my discharge letter did I find this out) but this was because of untreated AF. I believe that I have had AF for many years which was always put down to panic attacks ect.
The previous four months to being admitted to hospital I had seen 3 of the GP's at my surgery with fluid retention, breathlessness and feeling unwell. On two of those visits my HR was remarked on as being very high, but I was told by the first GP that I probably had womens problems and had ultra scans and a MRI scan all coming back clear. At the time I knew nothing about AF or HF, but looking back now I cannot believe that my symptoms did not scream at them heart problems. In the December breast cancer came into the mix and it was when I had the results in January that my breast cancer consultant picked up on the fluid retention, HR ect that he had words with my GP, telling them to get it sorted because he could not operate until sorted. I eventually got a apology from one of the GP's not long after I came home from hospital, I did not ask for it or query their treatment.
After the treatment in hospital for fluid retention I have had no problems with HF, no fluid retention or other symptoms, although still on Ramipril which helps the heart to pump more efficiently. I do have a pack of fluroseimide tablets if I do get any fluid retention but this has not really been needed.
My EP has said that he believes that the HF was just due to untreated AF. The cardiac department at my local hospital is not great, no consultant only a senior cardiologist who is not pro ablations, it is a large fairly new hospital but the cardiac department is quite small, probably because we are not far from Papworth, which is where my EP is. I eventually had my breast cancer op in the June, then radio therapy and 3 years of medication.
Oh Cassie, what an awful story. I’m picking up from this site and my own experiences that GPs on the whole don’t seem to know so much about the heart...
I think you should really push on this! My position is a little like yours in that I went into AFib in late September and am still in it (such a weird feeling isn’t it?) My meds have been changed twice because they didn’t agree with me and now I’m waiting for a cardioversion. (Covid willing).
I think that sometimes we have to be politely persistent!
The short answer is yes. Go and see a Cardiologist or EP. The downside is you may not get an appointment as soon as you wish. My GP referred me straight away.
It really saddens me and breaks my heart when I read cases like yours "diagnosed a couple of years ago last year my AF became permanent'" So your GP, like mine, played EP with your health. You have been given good advice on this forum to get referred to an EP for proper treatment. That is the least your GP can do for you at this stage of the game. GPs do not have atrial fibrillation training and accreditation to treat AF properly and they cannot prescribe rhythm control drugs because GPs are not licensed. Your GP is not helping you by keeping you "more years," but I will muzzle my mouth now.
Ask for a referral, GPs are not experts in Atrial Fibrillation. Even if the specialist says that you are on the right treatment , at least you know for sure, that what your GP is doing, is right for you. Good luck .
I have been in permanent AF for over a decade . It feels more comfortable than when I was in intermittent af.
I made a telephone referral to my cardiologist just to discuss my tiredness and lack of drive. He reviewed my meds and altered them. I now feel more like my old self. It was certainly helpful for me to talk to a cardiologist even though there was no urgent need. I would say that you would benefit from contacting your cardiologist just for an update.
Spoke to my GP yesterday he said they no longer do interventions for AF here for people my age (70) unless the rate can’t be controlled
He believes the rate is now under control so we should leave it alone
He did agree to an ECG and blood tests next week as his only concern is the kidney problems which he thinks are caused by the ramipril
Says we will discuss it further after the test
But I’m guessing he will stick with the rate control
I’m on bisoprolol ramipril and apaxiban
Unless your AFib is unacceptably symptomatic, or you can't tolerate your medication, pulmonary vein isolation (PVI) is arguably unlikely to be indicated in your case. It also carries a small risk.However I agree that you should hear this from a cardiac electrophysiologist, face to face. I would pay (£250) for an opinion from an experienced consultant at a teaching hospital, who has ideally performed upwards of 1000 PVIs. Your medication can be optimised, and follow up arranged in the NHS.
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