I've been under investigation for AF for a couple of months now. (A previous post goes into the details a bit, but TL;DR: I'm a mid-life crisis endurance runner with no-symptom atrial fibrillation and flutter.) Since that post, the echocardiogram ordered by my GP was conducted. The cardiologist who conducted it said that my heart was basically normal on all things he looked at. All parts of the heart are normal; flow is normal; no sign of enlarged atrium; no sign of athlete’s heart. He said I could exercise 'as normal', but my exercise regime prior to now was the 'medically excessive/calm down lad' category and it's not clear I can go back to running as I have been (i.e. as if pursued by a bear). I'd like to talk to a cardiologist about this in detail but there's no sign as yet that my referral via the GP has gone through (i.e. I've not received an appointment letter).
I'm still experiencing a bit of flutter (I think it's happened twice in the past month, a few minutes each time). Basically, since this all started, I'm a few kilos heavier, slightly stiffer, and I'm annoying my wife by hanging around the house instead of leaving it at speed occasionally. I'm now thinking about getting a private consultation with a cardiologist who can assess all the tests and tell me what the science says (and what it doesn't say, or is agnostic about). Does anyone have experience of the private route? Is there a ballpark figure I could expect for a consultation?
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The cardiologist who conducted it said that my heart was basically normal on all things he looked at. All parts of the heart are normal; flow is normal; no sign of enlarged atrium; no sign of athlete’s heart
That's good news all round.
I'm annoying my wife by hanging around the house
Nothing unusual about that (sorry ladies;-)).
Does anyone have experience of the private route?
Yes - me.
Is there a ballpark figure I could expect for a consultation
Around £250 give or take £50. It's well worth doing. I can see you are from the UK so I would go for it. I did the same for my first consultation with my cardio - they offered me an appointment on the same day! I wasn't able to take that but saw him a few days later - the wait on the NHS might have been months. I explained that I didn't have healthcare so would need to have treatment through the NHS. This was arranged and now I see him without having to pay. It's well worth paying for the first private consultation privately as you should get to see your cardio quickly and not have months to wait. Explain you don't have health insurance and that should fast-track it. You'll get your questions answered without the wait. Well worth the money in my opinion.
Just your luck with your area for NHS. I'm with Tayside NHS. Diagnosed by GP pescribed beta blockers. Ended up in a and e for a night. Cardiology came round and wanted echocardiogram next day. Unable due to emergency elsewhere. Got one in 3 days. Put under care of dedicated arythmia nurse. Tried 2 other meds. Now due consultation for possible ablation. All since 9 September. Sounds great however it's because I'm very symptomatic with episodes that can be every day last up to 22 hours.. Good luck.
Sure Tommy. That's another way of getting seen quickly if you are in afib and have a high HR. Call 111 and I'll guarantee they will tell you to go to A&E. Turn up and say 111 advised you go. I did this once with a HR of around 145 and I had an ecg and a cardoversion on the same day. The cardioversion was just done under sedation but you don't remember anything about it. I was back home about midnight and it saved waiting around for months for my CV. I live in the Staffs area and they only do 12 once a month on the same day. There's a waiting list and it will be next year now when I have mine.
Thanks, Paul, that's super helpful! One thing I was concerned about is that it doesn't seem very easy to transfer notes between private hospitals and the NHS, and I don't want to spend too much time explaining in simple/erroneous terms things like my ECG traces when it would be easier for him/her to see them. Did you have that issue?
It's a good few years ago now but from what I remember there weren't any problems regarding this. The clinic was private but they also took NHS patients who were referred there due to any backlog for tests etc via the NHS. As far as I can recall the cardio had access to my medical records on his computer.
Another way to do it is to sign up for PatientAccess. This is a free service and allows you to book GP appointments etc. You can also access all of your medical records. Simply do it on a tablet and show that to the cardio. If you have a printer do it on your laptop and just print out all of your medical history to take with you.
Thanks, Paul - I do actually have the NHS app on my phone showing my records but it often just shows header info. I'll check out the Patient Access service (I was using it a few years ago before the NHS app, I think)
As I feared, PatientAccess is accessing the same info as the NHS app - an entry might say 'ECG', and when you click on it, it contains nothing but the text. All those lovely graphs are somewhere else!
OK, Jason. It might not be much good for you then. The next time you have an ECG it's a good idea to ask for a copy of it - they will be happy to do this. At least that way you'll have a record of it. Your cardio will be able to tell if you are in afib and what your HR is any way by just checking your pulse. They can pick things up from this and point you in the right direction.
Yes private consultation well worth it. Running & other lifestyle changes need to be made until you have reduced the AF risk. You can then build it back but will probably be happier with a quieter life and won't risk it...my experience.
Thanks, secondtry - wise words. I just hope there are some change I can make that will reduce the risk. (The sensation I now know to be flutter is something I remember having forever, since I was a teenager at least - it may be impossible to eradicate in my case, though maybe surgery of some kind could help).
Yes interesting how long some of us have had it in some format and what caused it. You mentioning 'teenager' reminded me when I played in a Rugby Sevens tournament at school, over exerted and spent sometime afterwards with my arms raised high to alleviate an issue, can't remember what it was 🤣. Then all my life I have had the occasional ectopic, which I ignored and then AF stated in the 50's and properly diagnosed aged 60. Hope you work something out.
.I've started to do parkrun this year, and have asked two GPs about it, one in passing, one specifically. and they said as long as you feel ok (I have permanent af btw) it would be ok. Now I have, in the past run like a nutter, which may be why I have AF now, Currently I am nowhere near this, and think apart from shaving a few minutes off I'm as good as I can be. I have started to do a build up routine which you will recognise (speed play, (gentle) hills, but I'm taking that steady, but I'm also older of course, for which there is no cure. My 5k time is now exactly the same as what my10k time used to be, but I'm glad I'm getting round. If I could cure anything it'd be lack of flexibility as well.Have fun, Gary
Thanks, Gary - part of me is sad that I'd be running more slowly, but it had to happen eventually, plus the alternative is worse! Glad you're back into a routine and enjoying it.
Hi! Yes, you basically have the same story as me, even the running approach! I saw a private sports cardiologist. The cost was the same mentioned above around £250 although it is important to stress that this was because I could provide all of my data (blood tests, ecg, stress test, holter, etc etc). If you don’t have access to the data they may want to run tests which could hike the price up a lot more.
I was really reassured and relived after the meeting and had a clear direction to return to training with (but possibly because I don’t live in the UK currently and all previous consultations had been in second language/bad translations which is never reassuring!). I got full background on my condition and what considerations I needed to give in returning to running.
Thanks, RG72 - yes, I'm a bit worried that I won't have enough data for the cardiologist to make a decision, and I'm not really prepared for tests that I've already done! I'll probably end up asking my GP about getting hold of my data.
Yes, many of us went the private route, worth it for the consultation alone but know that the paperwork swopping to and fro between private and NHS can be a faff and the records are not transferable but you can often ask for them, may not always be given them though. My suggestion would be to avoid all and any drugs, other than anticoagulants if indicated by your CHADSVaSC score. Beta blockers are often first line treatment to control Heart Rate but if you are asymptomatic and heart good structurally do your research as the drugs can make you symptomatic. Were you advised by anticoagulation and assessed?
2 books I would recommend which give you options - one written by an endurance cyclist who is also a cardiologist (endurance athletes are a category of people who are very susceptible to AF so your GP is exactly on the ball when they said calm the exercise).
And The AFib Cure - Dr John Day - drjohnday.com/get-rid-atria... Who is a specialist cardiologist - EP - which Electrophysiologist Cardiogist specialising in electrical arrythmias.
There is no ‘cure’ for AFib and as you are asymptomatic not much will happen with the NHS as treatment is mainly for symptom control but good to get as much information as possible as to what can lighten the AF burden and losing weight is top of the list, although I find it almost impossible theses days.
Find your nearest Centre of Excellence for arrythmias - find a doctor who practices privately and in NHS if you can, be prepared to travel to consult and go for it.
Thanks, CD - that's super helpful! My CHADSVaSC score (and a couple of others) are 0, and I haven't been advised to take any medication. I'd be very reluctant (I'm not a big meds taker in general, though old schoolfriend of mine, who is a neuroanatomist, told me to start taking aspirin daily, which I've been doing). Great tip on the Centre of Excellence - never heard of that. I'll probably get around to losing some weight (I was eating a lot to compensate for the calories burned during runs, and the habit is hard to break)...
I've had a look for these Centres of Excellence - found a report or two with case studies, etc., but do you know of anywhere that presents a simple list of them?
Hi, think about getting a kardiamobile 6 lead(6L). You can then use it when you get the feeling. I bought 1 when I was in afib and the machine detected it until I stopped the attack. Used it about 3 times a day during that period.
The app stores results and I took them to a private Dr for review. The consultations were around £250 each time. The difference here is that I already had been diagnosed with afib.
Thanks, VinnyR - that's a good tip. I've got an ECG on my Apple Watch (one-lead equivalent, I believe) that isn't as good but seems able to detect the flutter, at least should give me a sense of when it's stopped (though I can feel it).
Hi, personal experience take what you can from it, good luck.
I got Afib during gym workout. Always thought I was fit and healthy. No obvious reason, but sleep apnoea and leaking heart valve probably contributed. Now had it for 10yrs. Tried private consultations but it was same cardiologist as I saw on NHS so opinion same, so better if at different hospital and completely different cardio team.
I was told by cardiologists that apart from leak my heart worked well as a pump, however when I had my valve repaired Dec 21, it turned out that was all a mistake and my ejection fraction rate was below normal so heart not pumping well and became a risk for op. Normal heart scans don't show my problem so you may need a TOE and angiogram for a proper dagnosis.
Thanks, 2learn - do you happen to know the risk factors for your issue? Presumably my GP didn't think a TOE (what be that?) /angiogram were necessary... Did you manage to have the op done?
Not sure what you mean about risk factors. TOE is a trans-oesophageal echocardiogram (TOE - also called an echo) is a procedure to look at your heart chambers and valves using a flexible telescope placed down your oesophagus (gullet). You swallow a hose with a camera on it.
Op was done but needed pacemaker afterwards because heart beat too low.
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Glad you're back into a routine and enjoying it.
Mitral valve prolapse with moderate mitral regurgitation 
Potential AF when I relax
Long wait for appointment. 
Trembling when I go to bed - Bisoprolol/Riveroxaban?
Please could anyone advise 
