I gave him a list I had typed of all my questions and he went through them one by one.
He was very happy with the Kardia ecg printouts and didn’t require an ecg there.
We discussed many things Af and heart related.
He also reviewed my cholesterol figures and said I didn’t need statins. (Also said it should have been a fasting blood test to give a true result) . Was excellent he could see previous blood test results not just my latest, on the computer.
Not concerned with my blood pressure.
I am going on the nhs waiting list for an ablation.
I have been referred through the nhs for an echo….about an 8 week wait locally.
In the mean time, until ablation decision time, we discussed my current meds and what could change to……checking for ingredients which I react to. Will be trying metoprolol and flecainide, while still staying on nebivolol, but drop the verapamil pip. His letter will set out dosage etc.
If meds don’t agree, can look at others.
He mentioned ongoing research being done in Australia along the lines of how weight loss can affect af.
So, as I am a little overweight, this is the incentive to knuckle down and loose some. I could find, once I have lost weight (ideally 2stone) I may find I can reduce or even stop the meds (not the anti coags though) and avoid ablation. Worth trying.
overall was very interesting, very informative, and I am happy with the outcome.
I feel that, even though he isn’t an ep, he has a lot of knowledge, and the outcome is what I had hoped for.
I don’t know how long the ablation waiting list is, I didn’t think to ask if he knew.
Best £250 I have ever spent.
now the question is, what are your thoughts on metoprolol an flecainide?
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Tilly1957
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Well, that sounds like real value for money. I have been lucky with my nhs cardiologist even to the point that she picked up on my A and E visit without me telling her and called me in for an echo. and consult so can't complain .She also has a good cardio nurse I can ring any time to ask questions.
I have never had an ablation at the John Radcliffe. i suggest you ring their cardiology dept and ask.You can always ask to go on a cancellation list at any hospital where you are waiting for an ablation or any other treatment.There is a very good chance you will get an earlier opportunity to be seen.
I’m so glad it was so helpful, Tilly! What a relief it must be
Sorry, I’m not on metropolol (I take bisoprolol instead) and I can’t take flecainide (due to a recorded episode of VT) so I can’t share any helpful experience of those meds
Just wanted to celebrate your successful appointment with you 😊 Jx
Sorry, VT is ventricular tachycardia, a type of arrhythmia
Be good to hear how you get on with the metoprolol. My GP wouldn’t swap me to metoprolol or nebivolol instead of Bisoprolol because he said they were ‘all the same’ !! (He’s retired now so maybe I should ask again!)
I have been on nebivolol probably 18 months or so now. I feel much better in it than in bisoprolol. Going to be interesting to see how the new meds added to that pan out …… fingers crossed
Only short, thankfully! I didn’t see it, but the cardiac technician was concerned and sent the reading to the EP. It felt like a short run of arrhythmia, I def counted it in seconds rather than minutes.
I have a wellnue device I don't know if your familiar with it but it is a bit like a holter monitor. After 24 hours it tells you what your heart has been doing and I had 1 second and 2 x 2 seconds of VT I'm going to show it to my cardiologist on Monday to see if it's anything of concern
Oh I’ve heard good things about the Wellue device- and I’m looking for something like that which is on me and records automatically rather than having to wait for me to get attached to it like the Kardia. Do you find it good?
I hope you get some reassurance about your VTs on Monday. My recorded VT was def longer than a couple of seconds and my EP wasn’t bothered about it. He said I didn’t need any other tests or anything. (I asked, as I’ve never had a cardiac MRI or stress test.) The only difference is he now says he wouldn’t want to give me anti arrhythmic medication.
I’d be grateful to hear what your cardiologist says when you’ve seen him. Jx
I'll let you know what he says.The Wellue device can be bought from their website, it comes with everthing you need to do a 24 hour monitor.
It's only small and you put it on your chest at a 45 degree angle from just below the collar bone on the left for 24 hours.
Then the data is uploaded to your computer or laptop and it tells you what type of rhythms your heart has been in along with loads of other stuff about 8 pages long.
It's good in that i can take it to my cardiologist to look at and he can interpret it.
Sorry, you can't take Flecainide for VT. Can you describe to me the symptoms when you had VT. I doubt that I have it, even though the holter that I wore several times did not record VT. Please, can you describe to me your symptoms of VT, how you felt it and how it was recorded for you.
Hi Bilja, I was lucky it got picked up at all, it was only because I had an implanted loop recorder in to try to pick up the arrhythmia symptoms I was experiencing (that turned out to be paroxysmal atrial fibrillation).
As well as the long episodes of AF (over an hour) I was getting, I also had (and have) short bursts of arrhythmia which I was told to ignore, as they are too short to worry about - eg strings of ectopics, short tachycardia etc. Apparently one of those short bursts of what I thought was ectopics was the short episode of VT. I felt the same as I do with the start of AF or ectopics - I feel a strange sensation in my chest and ‘hear’ the pause and jumpy beat in my ears. I feel a bit breathless. It didn’t feel any different from usual (though that’s presumably because it was only short. A sustained event would have a more specific impact, obviously.)
My EP said I could be having lots of these mini episodes, anyone can. He wasn’t bothered!
It’s good your holter didn’t pick up any VT. Worth asking your cardiologist if you’re worried, of course. Hope your heart settles and doesn’t give you any concern xx
Hey Jane Finn, I'm afraid that I have VT, but it wasn't detected because the holter that I wore 24 hours a day is not enough. If you didn't have a built-in loop recorder, you wouldn't have detected VT. I can't get a loop recorder from a doctoral student, because only those who fell unconsciousness etc.
here I am again after a while. I recently had a holter for 7 days and it revealed one short episode of VT in my sleep. I have 14.5. meeting with my cardiologist. We'll see what he tells me. On the holter that I wore for 7 days, it showed about 150 VES and about 100 SVES, one short episode of SPVT about 120 beats and that one VT in sleep 5 beats. Otherwise, I've been working until now a lot of holter and it never showed VT only this time. Here I am sending you below in the attachment that part of VT. I am very confused because I read that VT is dangerous.
Hi Bikica, good to hear from you and thanks for the update… I’m sorry to hear you’ve had this episode of VT, I feel for you, it feels worrying, doesn’t it? Short episodes of VTs CAN sometimes lead to more dangerous arrhythmia, as you say, but they can be nothing too. Several of us on here have had short ‘unsustained’ VTs recorded (such as your 5 beats) and have been reassured by our consultants that so long as they are occasional, they are nothing to worry about. However, the important thing is that you’re able to talk about your circumstances with your cardiologist and it’s great you’ve got an appointment. They may suggest putting in a loop recorder to keep an eye on frequency, or more frequent holter monitoring. They may want to do things like an echo, if you haven’t had one recently.
I have lately had a lot of short episodes of VT (sometimes more than 1 a day) so I am due to have more investigations.
Please do let us know how your appointment goes and what they say xx
Do you know if VT can be treated with Propafenone (antiarrhythmic drug Rytmonorm). Previously, my cardiologist told me when I have VES skips and tachycardia (then it was supraventricular tachycardia) that I can take it as needed. I read that VT can be treated with Propafenone, but how if antiarrhythmics cause arrhythmia in some people... Do you know anything about that, for example about Propafenon (Rytmonorm)?
I’m so sorry, I have no idea. Definitely worth adding it to your list of questions to ask your cardiologist when you see them. I’m compiling my own list too x
The LEGACY trails in Australia a few years ago showed that weight loss was the NO 1 thing a person could do to reduce theirAF burden. Ideally aim for a BMI of less than 26 by which time your ablation may be superfluous.
Suggest no crash diets, read & take good professional advice. I like westonaprice.org/#gsc.tab=0 and have been to their conferences in London in the past, not just food but good lifestyle choices generally and their experts are great eg doctor-natasha.com
Thats excellent news Tilly I am so pleased for you. With regards your question on drugs, we all react in a different ways, your cardio seems to know what he is talking about so go with him, do your diet and put yourself in his hands, in a positive frame of mind you can tackle anything, one step at a time, keep a diary so that you can report back to him with facts and I wish you the best of luck. Well done!
Don’t know where in uk you are, I’m in Devon, and go to Exeter cardiology and have already been waiting over 12 months for an ablation, so best of luck!,
I am in Essex, will be on the list for Basildon hospital. I am hoping meds and weight loss will do the trick, you never know. Luckily I am not in permanent/persistent af, but get an episode about once a week, which is disruptive enough. Hope you don’t have to wait much longer x
What I find is shocking is that you only get the courteous, comprehensive and thoughtful consultation by paying for it, though the NHS was set up to provide treatment for all from the cradle to the grave!
Although I am in France and not the UK, I have had more than enough of arrogant consultants who seem to think the patient has no need or right to know the medication that has just been prescribed, usually written on the prescription as the brand name rather than the generic. I was prescribed Amiodarone without a single word of explanation of what it was, how it worked, the downsides and the advantages. There was no time for more than 'Take this for the next two months and then see me again'. The last cardiologist was even worse and was appallingly rude to me, and wouldn't even tell me what drug he was prescribing and got angry when I kept asking him what it was and what it did. He actually reduced me to tears in the consulting room and kept saying, 'Hurry up! Hurry up! I don't have time for this!'
In the end I paid for an online consultation with a recognised cardiologist at a London hospital and like you, I had a full half an hour's consultation with everything explained in a way which recognised me as a human being with a right to know what the effects of various drugs were and what was best for me. I paid much the same as you and it was certainly worth every penny.
I understand that hospital consultants may be pressed for time, but they are not pressed for courtesy and human understanding.
Luckily, my guy is nhs too, and he is the same across the board. He was like this when I first saw him in 2015. I also told him my opinion of him then and now ( praised him) xx
Sounds exactly like me. I have had all the tests done ie 2 x echo and several ecg’s. My heart at this time is undamaged and is in good working order.
My private consultant has put me on the NHS waiting list for ep app to go forward with ablation. Again like you the waiting time can give me time to think about the procedure AND to try and lose weight. I’m failing at the first post with the weight issue. I’m really struggling with it. Just wish I could get my mind set in to doing it.
I've found that the first two weeks is the key to any diet I've tried. If I can get past that I can lose weight. You have to really want to do it but it's worth it if you can - best of luck.
So two poached eggs, one small toasted wholemeal roll, mushrooms, for breakfast. I admit I used butter., but I can’t stand spreads & margarines, but that is all the butter for the day, my butter is equal to a chocolate/biscuit treat 🤣
I have arthritic knees, and fibro, so mobility is dodgy - I used to walk miles with my dog along the seafront, yoga, swimming - find it really hard to do anything now. But am setting myself small targets, aiming to do some seated exercises, walk around the house more, be more conscious of what I eat. Am reducing carb intake (not just grains, but carbs in veggies) No dramatic changes, slow and steady. I will still have the occasional Chinese as a treat to ( cardiologist said it was fine as we laughed about it) so long as not often. Think I will set myself a target date to have one - oh, tonight looks good 🤣🤣🤣🤣 but I won’t, as usually trips me into af x
Exactly same as me. I’ve had 1 knee replaced which was really good for me. The other was supposed to be done 8 weeks later but I got blood clots again despite being on blood thinners. 3rd time now after surgeries.
Like you, I used to walk every day with the dogs. My knee is so bad now I can barely walk
Tennis was my favourite sport I loved it that’s why I’ve ended up with bad knees
I used to love dancing too, but again that’s taken a back seat.
I’m sat a lot these days. Motivation to do exercise is minimal 😩😩.
I am on crutches to get around since end of last year, drives me mad 🤪 I rode horses, squash, yoga, jogging. I even did a power walk marathon…….just before all this heart stuff and fibro started. I hit ‘the wall’ in the middle of it, thought I was going to die. I would say that was the trigger for both af and fibro. I had good friends with me, I was going to stop, but they supported me and we got through to the end, and I got my medal. We will get another dog, just need to get my knee sorted out first! X
He isn’t an ep, but he has good expert knowledge. Thanks to this group, much of what he was explaining and what we discussed, I could understand easily . I didn’t even get to mention ablation, he did 🥰. I would recommend him 100%. It could be months, maybe a year or so, before I get to the point of ablation - I will get a big surprise if it comes through quickly! 😊
Metoprolol is now on my BAN (allergic) list. Why because it made me breathless and fatigued. My 24-hr monitor showed pauses at night and H/R Day avge 187 bpm.
U need an ECHO to see whether your heart is structurally abnormal (enlarged) because my EP/H/Sp said I could not have one because of the above. Also couldn't have Flec or cardioversion.
I have a balanced regime of BB Bisoprolol (which is better for AFs) and CCB Diltiazem. And without doing any of the above.
Ablations scar your heart. Once done there is no going back.
I can’t take bisoprolol. My heart scans/echos etc from previous years were all clear, no signs of heart disease at all, clear as a bell. I realise the echo will show any changes, which is good. And yes, no going back if have an ablation. Am hoping meds & weight loss will do the trick - fingers crossed. Thank you for the advice x
I saw Dr Alan Harkness, at The Oaks. I rang his secretary direct to book. Memory fog was one of the issues I had with bisoprolol. Much better on nebivolol. Verapamil was a pip that I only ever took one of when af reared it’s head. I know there is a red flag for these two combined as they can make heart rate go way too low, dangerously so. . It is not recommended to combine, all gps//pharmacists who I have dealt with are quite concerned at the combo. . I think a&e prescribed it as they had to check others for ingredients I may react to. ….. I will still be on nebivolol, just no verapamil. It’s safer not to mix the two. I was really glad to get off bisoprolol.
I agree,I found the private initial consultation was worth every single penny!I have no experience of metropolitan but flecanide has been my friend for some years. I used it as a PIP at first then maintainance dose,in conjuction with bisoprolol .
No side effects and was effective for a long time, eventually the AF got the upper hand and ablation last year.
That sounds wonderful and also that you feel relieved by the visit.
An EP, by the way, is no more than a heart specialist (i.e. cardiologist) who has taken a training course in carrying our catheter ablations. Their medical knowledge of the heart and its conditions will be similar as they will both have received identical training. On this forum, some ascribe the terms "plumber" and "electrician" but, in my view and experience of the medical profession, that suggests the two are very different, when they are not as both have a similar training in and understanding of heart arrhythmias.
That’s what I think, re the difference between the two. All cardiologist will have knowledge of all aspects of the heart, and most will specialise in their favourite area. At the moment I am 50/50 about an ablation. I don’t like taking lots of meds ( more than 2 is a lot for me 🤣) but having this done to the heart is irreversible and not guaranteed. I will cross this bridge if/when it comes x
It’s not an easy decision and there’s no truly compelling evidence it seems that an early ablation is all that much more successful. It must depend on symptoms, I think, and personal choice.
As for tablets - I wish I were only taking two a day!
There are two more, atorvastatin , which I refuse to take after 6 days because it made me extremly ill (cardiologist said my cholesterol is fine) , and candesarten which I stopped and now use hibiscus tea instead. 🤣 not that I am non-compliant or anything. Surgery haven’t said anything 🤷♀️. Erm… not that I have told them 🤣. X
I was given losartan, which I think is similar to candesartan, even though I don't have high blood pressure at all. The cardiologist explained that it was a useful cardio-protective drug proven to extend cardiac function over the years, so, who was I to argue!
I had an episode where my bp went sky high, 200 and something over some ridiculous number ! 111 got me into the gp within a few hours, but it had begun to settle done - was still high, 160 on top can’t recall the bottom, but was still 100 and something. When I asked why woujd it do this suddenly, he said it just does. My bp was all over the place in the first week of taking it, going very low x
I am in the US but I tend to disagree with you regarding cardiologist and EP. I started out with a cardiologist which was ok for a while but when it came to AF meds she didn’t really have a clue. She prescribed Flecainide because that’s what an ep would do. Then when I had side effects like other arrhythmias from it she told me to give it time. I stopped it and saw an EP. He told me to use it as a PIP which I did and it worked wonders. I never saw the cardiologist again. So I think the difference in cardiologist knowledge of management of AF vs EP is significant.
I wonder whether your experience might be more to do with the individual doctors rather than their specialities. In the US, I know that the EP is often highly regarded by many people online and seen as an expert on arrhythmias but, looking at the training they go through, it is much the same as in Europe where the learning about arrhythmias is an aspect of medical cardiology speciality taken after the initial medical training. It simply has to be since arrhythmias are met with on a daily basis. What I think you luckily eventually found was an EP who was not only a cardiologist specialising in electrophysiology, but more importantly, a passionate and studious individual.
Yes you could be right. The original cardiologist and I didn’t hit it off from the beginning so it could be a case of individual doctor. But it got me to my EP and that’s the good thing! 😃
I am almost certain my guy is prescribing the flec as a pip. I should have recorded everything or taken notes ……… but I didn’t 🤣. He said it will all be in my letter, setting out a treatment plan specifically for me . And I can email any questions or concerns I have. I will bear your comments in mind, though, thank you.
Yeah it worked great for me as a pip. It was my best friend until I had my MiniMaze. My episodes only lasted two hours tops with it. No way could I take it daily. Good luck!
FWIW, when I saw a private EP 2 weeks ago for a cardioversion I asked about next steps if it failed and she said ablation, and I asked for wait times. 6 months on NHS, one month privately. Self-funding would be £ks for private ablation so we're sticking with our personal BUPA plan for now. This is in Cambridge, if that helps.
I guess my first appointment will be with an EP there, don’t know the waiting list time for that. , it’s a long drive down the a12, so I hope it isn’t in the winter. Self funding is not an option, way out of my price range. Thank you for the information x
When I was first referred to the EP in July it was in my notes that I'd be seen by 31 October, so 2-3 months. I only met the EP 10 minutes before the cardioversion but I would imagine ablations are possibly a bit more considered. Plus my arrythmia was provoked by surgery and apparently fairly typical/standard so perhaps they were hoping for an 'easy' fix. If it helps you plan your life, do ask about wait times - I found the nurses very accommodating with giving me that sort of information. Good luck with it all x
Thank you. We are retired, live next to the sea, don’t go away much, and I have the grandchildren each week (love it) Not really a lot to plan, thank fully. I will know soon enough. X
I had the same as you my bill was 280 but well spent , had atrial flutter, and brattycardia as always had slow pulse as very athletic, he is electrophisasist, consultation February, ablation June just gone had palps for 6 weeks now all OK pulse quite regular 60 to 72 when I exercise, medication, lansaprolol morning, and 20mg atorvastatin at night, 3mg wafarin 5 days and 4mg 2 days , good luck with ablation, 80 years old lol
That is very interesting and informative. I need to lose a bit of weight and now other half has been diagnosed with pre diabetes there will be no more cakes and biscuits around! I am going to ask for a private cardio referral tomorrow at GP appt.
My guy suggested low carbs (including reducing veg like potatoes/sweet potatoes, parsnips, swedes - all the veg that are high carbs) he also mentioned the 5:2 diet, but I struggle with fasting for 24 hours. (Probably poor self control 🤣.
I didn’t ask gp to refer me( can never get through to them in time to get an appointment) I just self referred Good luck x
Apparently, guidelines have changed in the U.K. and it’s no longer deemed necessary, which is what I was told by my surgery. The cardiologist said the blood lipid results would be invalid due to what could have been eaten and shoukd have been a fasting one. . I know for certain that I would have had eggs for breakfast, not long before getting it done. If I have another one, I will tell them I am fasting ! X
Are they trying to save money or making sure everyone has high cholesterol so they can prescribe statins ? - I don't know if it's true but I have read that there is a bonus involved for the number of statin prescriptions written !!!!!!!
My guy say the surgeries work on the results of an algorithm and if it shows you tick certain boxes, including age, they want you to go on it, regardless. But he wasn’t impressed that the used the blood lipid readings as a reason to push statins as wasn’t done as a fasting test, which means it isn’t accurate .
GP surgery complied with the cardiologists request for a fasting blood test re cholesterol blood lipids. Had it done on the 27th just gone, surgery should have results by early next week. His letter said something about my cholesterol levels didn’t warrant any intervention and how the blood lipid levels would be invalid if not a fasting test. Fingers crossed.
I'm sure it will be fine, path lab here in SA has results in a couple of days, sends them through to GP who then phones patient with results and way forward (but it's all private, doctors and lab.)
Hi Tilly, I wish I’d been as well organised as you when I went for my private EP consultation. I did have a list of questions with me, but he talked and talked for most of the hour and I hardly got a word in, and by the end I felt so bamboozled and had so little time left that I couldn’t prioritise which of my many questions to ask him. I did record the session, so I’m hoping when I play it back it might fill in some of the gaps in my understanding. But the upshot was he has put me on his list for NHS ablation next spring, so I guess I ended up in the same situation as you, it just felt a lot less satisfying than your session sounds. However, I had my echo on the NHS less than a month later, and that all seems OK, so that’s one less thing to worry about🙂
yes, sounds similar, glad the echo was ok. I am a retired care manager, and am used to being prepared for meetings and consultations with professionals that may seem daunting 🤣 I forgot to record it, but luckily, this time, I can remember what he says as I re read my list x
Brill. Glad you felt it was well spent snd informative. I’m on the weight loss journey at the mo, AF, diabetes, OA etc. I’ve cut out carbs, increased water intake snd try to eat within an 8 hr period only, I only started about 10 days ago but 2kg gone already….many more to go and unable to do aerobic exercise so not expecting a quick fix. My food is so much more interesting and tasty now there are no potatoes, bread, rice, pasta or cereal, I just give it a bit more thought. Hope you get there and get your ablation soon.
Ooooohhh I like whatever it is in your photo! My carbs are quite low skready (says me who has eaten bread today plus a huge helping of home made apple crumble at tea time 🤣 ….. the apples needed ydingvup and the grandkids love it) I might try the 8 hour window type of fasting. Are cups of tea in the night ruled out?
I have black tea anyway so it would only count as water but I would say an insomniac cuppa is a must, milk, sugar whatever for sure. Black coffee has to be strong but black tea you have to be able to see the bottom of the cup through it! I’m gonna have one now , talking bout it set me off. Spinach, cottage cheese, pomegranate n walnuts, lovely. Take care and any good low carb/high protein tips welcome 🦊x
Thank you. I used to drink my tea black with a splash of lemon, don’t know why I stopped. I like the recipe, although will leave the pomegranate out as I don’t like them. I might try with blueberries.
I've been on 25mg metoprolol BD along with flecainide BD for almost 4 years. I'm also on magnesium tablets (directed by cardiologist) and some other medications unrelated to AFIB. My Flecainide started at 50mg BD but was increased to 100mg fairly quickly and then 150mg before PAF events became infrequent. Was going to trial a reduction to 100mg BD but COVID came along so I stayed on 150mg BD. Ended up contracting COVID and it coincided with several events of PAF when I had COVID and during the months following. It has settled down now and it's been several months since I've had PAF. Starting to think again about trialling a reduction to 100mg BD. I'm not aware of having any negative effects from these medications, except a bit of constipation, which is managed with a daily Coloxyl tablet taken with evening tablets. Prior to starting medications my PAF would last 12 to 18 hours and always involve high HR (resting >120bpm vs normal <60bpm). If I have an event now it can be a short episode - ranging from <30 minutes to a few hours. Everyone's experiences with medications differs but I'm happy with Metoprolol and Flecainide - at least as happy as one can be with having to take medications twice a day.
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Jx
EP consultation and 4 months post ablation report. 
AF starting in the middle of the night again
Ablation update and some good news re our NHS
An update on EP refusing ablation because of obesity.
