I was diagnosed with AF last year and it took a few months to find a medication for my high blood pressure to settle that I now take three Verapamil a day , Clopidrogel, Atorvastatin and one Doxazosin at night.I'm awaiting an appointment with the AF doctor.
Recently the fluttering sensation in my chest has started getting worse and I do try to ignore it. I went to see my GP as my pulse rate was going over 100 and never below 90 and she asked me to do a week's blood pressure twice a day recording. Each day either the morning or evening reading was high and my blood pressure monitor indicating irregular heartbeat. I have started feeling really tired and on occasion have had to go to bed to have a nap.
My GP said if my heart rate goes over 100 to ring an ambulance because you can go into heart failure quite quickly. I didn't ring for an ambulance because I knew my heart rate would go back down. Obviously I am worried by her advice to ring an ambulance. I do have moderate LVH this was diagnosed by my cardiologist two years ago after many tests.
Please can anyone advise me how whether or not I should be concerned about the long wait to see an AF specialist and is there anything I can do to help myself apart from losing weight and mindful breathing exercises.
Sorry about the long post.
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Noodlesalad
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Firstly Normal heart rate is between 60 and 100 so it obviously isn't going overly high and I suspect your GP is covering himself by telling you to ring for an ambulance. A and E are unlikely to do much other than observe you and send you home.
I am a little concerned that you are not anticoagulated though as AF does increase our stroke risk. Clopidogrel in not an anticoagulant but an anti platelet and unless you have a specific medical reason to be taking this it seems an odd choice.
Regarding seeing "an AF Doctor" an Electrophyiologist or EP who is a cardiologits who specialaises in AF and other arrhyythmias, I can only recommend that you consider investing a couple of hundred pounds in a private appointment. You can leapfrog the NHS system and then return to that once seen . It will depend on where in UK you live , but AF Association main website has a list of EPs by area in the patient information section. Once you have chosen a hospital get your GP to write a letter of introduction to the shosen EP.
Yes loosing weight (if needed) aiming for a BMI of 26 or better will obviously help as will avoiding any onbious triggers such as stress, alcohol etc.
Thank you for your response I really appreciate your advice it's really helpful.The GP I did see said the same about not being on an anticoagulant she didn't understand why I hadn't been prescribed one to begin with, I was taking aspirin before I was prescribed Clopidrogel and the pharmacist at my GP practice told me to stop the aspirin I should have asked why really.
Thank you again I really appreciate your response.
Your GP can prescribe you an anticoagulant - it’s strange that she didn’t suggest this for you, when she mentioned them. It sounds like you need to have the conversation about them again.
I suspect you were taken off the aspirin because of the clopidogrel.
How long have you been waiting to see a cardiologist for your AF? Have you ever had a heart monitor - one that attaches to you, provided by hospital?
I saw my cardiologist two years ago and I had a heart monitor for a month, there was no evidence then of AF. I have a blood pressure monitor that also does my pulse rate and an a pulse oximeter. I don't take my blood pressure every day and only use the pulse oximeter when I get the fluttering sensation in my chest.I've been waiting about four months for an appointment with the AF specialist , which is the person who advised my GP to put me on the Verapamil.Thank you so much for your response.
A lot of us wear wearable devices to monitor our HR throughout the day, which can be helpful for some people who are in AF/arrythmia a lot, or who are in a similar position as it helps to give a proper indication of how their heart is behaving. If you are only monitoring your HR for a very short time, twice a day, it doesn’t really give you the full picture of what your heart rate is doing.
I would recommend you make an appointment with your Gp as soon as possible to have another discussion about anticoagulants - mention your CHADS vasc score to them? This is your risk of getting a stroke due to AF. They really should be discussing these with you.
As others have said, please consider jumping the queue if you can afford it and see a private electrophysiologist or cardiologist ( preferably an EP) privately. You don’t have to referred by your GP. You can Google their secretaries on line - usually they’re at your local hospital and work for both the NHS and private, you’ll get seen usually in a couple of weeks.
I can't thank you enough for your support. I think one of the problems with my GP is I had an ECG done at the practice a couple of months ago and they said it was normal but I knew when I had it my heartbeat was normal. What's interesting is I had an episode of feeling weak and breathlessness a couple of years ago and my GP referred me to A+E I was fine but my ECG showed up an old myocardial infarction when the doctor saw it he said he wasn't concerned about it and all my other tests were good.Please can I ask you about the wearable devices or is there a website I can look at. I sat with my pulse oximeter on for about ten minutes the other day and my pulse kept jumping between 94 bpm and 110, it was quite erratic.
I've looked online for an electro physiologist within a twenty mile radius of where I live and I will pursue this in more detail today.
The trouble with AF is that it’s often never picked up on an ECG, if it’s one that comes and goes. At least you managed to get it diagnosed last year when it was caught though, on an ecg.
I think you might possibly benefit from having another heart monitor as it sounds like your AF has become more frequent,
Some of us have Apple watches, or Fitbit watches. You could get a Kardia machine too, which is a portable device, easy to set up, where you take your own ECG that you can show to a cardiologist. Lots of info on line search ‘Kardia’. They only monitor for short periods while doing the ECG. But it tells you if in afib.
Thank you. I've been looking online at various body worn heart monitors and also looked into specialist in my area in electrophysiology now just deciding which I should give financial priority to as I can't afford to do both.Thank you again I'm very grateful.
If you are now 66 and you saw your cardiologist 2 years ago then you hadn't reached the magic age of 65 when a point would be added to your CHADsVasc score . That might be why you were not prescribed an anticoagulant then. However if you had high blood pressure that would have given you an extra point to add to the one point you get just for being female so you should have been prescribed one. Now you are 66 your score will be 3 so you really must get this sorted out.
I have spoken with my GP and asked her about an anticoagulant as my father died at the age of 42 heart attack due to embolism, my brother died age 52 aortic aneurysm and I still miss them both very much.Anyway my GP said she didn't want to start me on anticoagulant meds and to wait and see what the cardiologist said I did tell her I've been waiting four months for the appointment.
She's now asked me to do a four day blood pressure monitoring at specific times 10am and 4pm, so that she can get a more precise perspective, she's read the 7 day one I sent in last week at her request, she's also arranging a 24 hour blood pressure monitor.
I've decided I will at the end of July arrange a private cardiologist appointment although I have been referred to an AF specialist.
I am so surprised and quite shocked actually to read what your GP said to you today.
Although the history in your family is already something she has to take notice of, your CHADS vasc score indicates you should be offered them - and at 65.
Rather than wait until the end of July, is there any way you can seek a second opinion at your Surgery and see a different GP?
I decided to contact the hospital I've been waiting for an appointment from to get some idea of when my appointment will be. After three phone calls I was told I'll be getting a letter in the next week or so and my appointment should be the end of July, so I'm relieved to know that.I don't know if seeing a different GP at my surgery will make much difference. I spoke with a different GP about a month ago regarding my heart and blood pressure problems and she reassured me that right now I don't need heart surgery and they are keeping an eye on everything.
I think over the years the two gp's I have seen I have told them about my family history but the GP I've seen recently clearly didn't know it wasn't on my notes.
I'm 66 now and nobody has suggested anticoagulant meds, I'm not very good at speaking up for myself and the last month it's been a financial nightmare car insurance, road tax, mot revealing problems needing attending to, so the money I could have spent on a private cardiologist was sucked up by my car🙄
Everyone on here has been so kind and helpful and I've been reading up on AF so I'm a little wiser, if my GP asked to see my blood pressure monitor she would see how crazy my readings are and even when my blood pressure is ok I'm still getting the irregular heartbeat symbol with my high pulse reading, that said I'm feeling calmer and glad for my new friends on here🙂xx
Oh bless you. I know it’s hard sticking up for yourself when you have all this going on - and you do have a lot. It all suddenly piles up and to top it all, AF makes an appearance.
When or if are in AF, and you have this 24 hr BP monitor on, your BP will be all over the place. I do wonder if she realises that? Hopefully you might not be in it when it’s on, but it sounds like you might be. You’d be better having a heart rate monitor ( in my opinion)
I’m sorry she wasn’t more helpful. I’m hardly one to judge her as she is a GP after all, but she really is wrong to not approach anti coagulants with you. Try not to worry about it, as you need to stay calm. If you are feeling up to it - and I really won’t force it with you, but please do try and consider requesting another gp if you can, purely to discuss anticoagulants relating to your CHADS vasc score. Mention that specifically.
I’m glad you have an appointment through at last for the hospital. . Perhaps once you get enough money together, think about a device you can wear at that point, to check your HR. At least while all this is going on.
Thank you Teresa, a wearable device is on my list.I will also think about seeing a different GP firstly I need to do more reading on CHADS vas so I'm confident in what I'm saying.
Aspirin is not an anticoagulant either and not usually prescribed for someone with Af type risk of stroke. I would ask to be referred to an Electrophysiologist via your GP.
That's odd because many people believe aspirin does act as an anticoagulant at least that's what we're led to believe by the media.Thank you for your response.
Many many years ago, aspirin was all they prescribed for AF. This changed about twenty years ago. It doesn’t prevent AF type stroke. I’m not sure where you read about this in the media, but it’s very out of date unfortunately.
It's strange how GP's can all say different things. I asked my GP if I was out walking the coastal footpath, at what heart rate should I call for help. His answer was 130bpm.
This BHF booklet may help you understand your heart condition more easily:
I can identify with much of what you've said. TBH, my experience is that my GP is the last person I'd go to for a cardiac opinion or advice, or mainstream NHS either - its quite clapped out. Over the last 6 to 9 months I've had an increasing number of weird stuff in my chest. Although I can't really afford it I searched out online for a Cardiac Consultant and paid to go private. Best £800 I've ever spent ( see my earlier post ). The £800 wasn't just the Cardiac guys fee, it included and wide range of tests as well, all done privately.
Was originally diagnosed with AF in Jan 2010 ........... so this check up was just a case of checking and monitoring the current state of play, and well worth it. It has identified three issues that as I've aged I was unaware of ....... more serious or potentially serious is the calcification of the coronary arterys.
Personally, if you can afford it, pay and go and see a Cardiac cons. privately, NOW ! don't wait, if nothing else, apart from denting your savings it will give you a measure of peace of mind. I was in and seeing my guy in a matter of a few weeks. Lets face it £800 is about the cost of a summer holiday away from home. Not that much of a sacrifice where heart health is concerned.
Thank you John for your reply. I did pay to see a cardiologist privately two years ago and has a battery of tests that revealed moderate LVH and his advice was for me to be treated with medication. At that time my blood pressure was high but nowhere near as high as it's been in the last twelve months plus the fluttering and irregular heartbeat.My GP when I flagged this up to them tried me on many different blood pressure medications and finally got one that overtime didn't give me so many side effects that was Doxazosin. However my blood pressure started going up again I did a week's readings for them and told them about the fluttering sensation in my chest and the irregular heartbeat.
They then contacted the community cardiologist who started me on Verapamil three times a day and one Doxazosin at night and referred me to the cardiologist at Liverpool hospital, still waiting for the appointment.
I did alot of research yesterday on going privately again but right now I can't afford it till end of July so I'm going to pay but have to wait till then.
I'm so grateful for the help I'm getting on here and the advice I was beginning to feel like I was worrying about nothing and didn't want to bother my GP or anybody.
When I had my AFib episodes, my heart rate and blood pressure soared and I was told to go to A&E. I was always given an ECG within 15 mins of waiting and when they saw it, I was taken into the Majors Dept and usually given a drip or other medication, to try and stop it. I had less than 10 episodes over 9 years and I’m sure the advice I was given, helped to stop it getting worse. I was offered an ablation in 2020 and was put on a waiting list and I eventually had it last September. I was told it is far more successful, if done while the episodes only happen occasionally. Glenfield Hospital Leicester, where I went , is one of the largest and most technically advanced Cardiac Surgery Units in the country, so I had the best Doctors doing my ablation. Dr Sandilands who did mine, had done over 2000 ablations, so I’m hoping he’s done a good job and it doesn’t return.I had to wait quite a while to see someone at the beginning of all this, but unless it’s urgent, that’s what you have to put up with, unless you pay out to see a Doctor privately and can jump the queue.I believe you can then have your treatment on the NHS. Worth thinking about, if you can afford £200 or £300. Good luck.
So sorry you're having so many problems. My very meagre advice would be to see an electrophysiologist privately as my decision to do this was incredibly beneficial. I had no support from GP practice nor NHS cardiology. Many on here are more experienced than I am and I heed their advice from their vast experience and has been a lifesaver for me. Hope all goes well and you're sorted out very soon. Such a stressful time. Lynne
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