Unable to take anticoagulants

Hi

I recently been told by gp that I have AF following an ecg.

I am unable to take anticoagulants due to other health issues.

At the moment I am on beta blockers and aspirin. I had a heart attack in 97.

I can't understand it, for the past 3 years I have had ecg,s and was told I have ectopic heart beats and nothing to worry about. Now all of a sudden I have AF, my pulse is exactly the same as it was 3 years ago. It is irregular as it misses a beat quite frequently, but it never races or flutters and I feel fine. I do get short of breath if I overdo things but I have copd. The gp wrote me a script for anticoagulants but I phoned the cardiovascular unit at my hospital and they said not to take them until I have a full evaluation by the cardiologist as I also had a evar stent fitted for a AAA (abdominal aortic aneurysm).

To say I am worried is an understatement

Thanks

Rogers

P's, sorry about the double post I tried to copy and paste without success

25 Replies

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  • Hi Roger, firstly welcome to the AF club and commiserations on your membership.

    I can understand your concern about your diagnosis and anticoagulants but don't quite get your question about not understanding? what exactly is worrying you most?

    With regard to the anticoagulants, it sounds like the sooner you have that evaluation from your cardiologist the better so I do hope that happens soon for you.

    Apart from the increased risk of stroke for AF patients, AF is a relatively benign arrythmia compared to the AAA and many people are, like you, relatively asymptomatic but it can be progressive over time. There are good treatments available - I would suggest you look at the main AFA website and download their information leaflets and just learn as much as you can about AF so that when you see your consultant you can ask informed questions.

    AF has a particular pattern on an ECG which is very different to one showing ectopic beats and is easily identifiable i.e.:- there is an absence of 'P' wave and a 'saw tooth' pattern to the trace with irregular, irregularities. I would say that many people mistake ectopics for AF and vice versa as they can feel quite similar but ectopics are a missed beat - that is why an ECG is so important for diagnosis.

    EP's (Electrophysiologists) are the specialists in arrythmias as cardiologists tend to look after the 'plumbing' i.e. Vascular whilst EP's are the electricians of the heart so it may be you will be referred to an EP for a consultation.

    Don't hesitate to ask questions, this forum has been an excellent support for all of us with many helpful and interesting posts.

    Best wishes CD.

  • I am worried about having a stroke. To be honest I'm terrified. I scored 2 on the chd test or what ever it's called.

    You see I also suffer from severe treatment depression, gad, anxiety andI panick attacks plus ocd which mainly focuses on my health.

    thank you very much for your reply. I really appreciate it

    Roger

  • That should of said. Severe treatment resistant depression..

  • OK, that obviously will make this situation very difficult for you. 2 on the CHADS score is significant but not high. Probably nothing I nor anyone else can say to you is going to reassure you so I am not going to even try.

    You say you have severe, treatment resistance depression which I interprete as you are always going to worry - unless you amend your thought patterns and if you are treatment resistance I guess you have already tried CBT.

    A thought to hang onto - CHADS is a general risk assessment tool for the whole population - i.e.:- a herd risk scale. Statistics only predict the risk factor in the total population, never the individual so it compares individual factors against the herd average. There are many with a low score who have suffered strokes and many with a high risk factor who don't take anticoagulants who have not - no one can predict what is going to happen to you.

    There is also a balancing statistical risk benefit scale called HASBLED which calculates risk of bleeding if you are given an anticoagulant - this is why the assessment from the cardiac team is important but it is difficult when you have been given two opposing opinions.

    So in some ways you are doomed if you do and doomed if you don't - but that is only one set of lens you could look at it from.

    No matter what you do or don't do or what the doctors do or don't do - we cannot predict what will or will not happen to us or when - that is uncertaintity. Many people struggle to cope with uncertaintity and feel very insecure when they consider it but that is part of the human experience and finding ways of coping with that is sometimes the best we can do. Distraction works for many - especially doing something you love, enjoy, gives you a high or fulfills you. For some that is extreme exercise whilst others it is art, music or history - doesn't matter what it is - what matters is appreciation.

    What do enjoy? What do you appreciate?

  • Hello again Roger. I'm so glad that you decided to post here. CDreamer's comments to you are so much better than I could have offered.

    The last paragraph in the post above is so important. The most important element in getting to deal with this is you. I know that there are others on here who are learning to cope AF and with worries like yours and I'm sure that they will offer good advice.

    As I said on the other forum......DON'T PANIC!.....and if you haven't yet read The Hitch Hiker's Guide to The Galaxy may I offer that as a great distraction?!

  • Roger. The key in my view is to get to see an EP as soon as you can. If you can afford it I would suggest the initial consultation is private because you will get it quicker.

    As said above EPs are the electricians of the heart (and veins!!!) and are therefore much more informed than the majority of cardiologists about AF. EPs have to be cardiologists. The reason I say this is from my experience and from what I have heard and read EPs are much more knowledgeable about the heart's electrics (and hence AF). Also more up to date and informed on anticoagulation because almost all of their patients are/will be/have been on anticoagulants. Yes different EPs have different opinions about the different anticoagulants but that is life!!! Some of the NOACs can be prescribed at lower doses if there are other medical conditions (or where someone is small). My GP was keen on NOAC but left it to EP to decide which. However some GPs (and CCGs) will fight tooth and nail not to have patients taking NOACs (many cases in these posts). However some of that may be down to money and some to old bias about Warfarin. However it is your right to have them if appropriate. I have heard that in a few cases where EPs or Cardiologists have said about NOACs then GPs have been quite happy to prescribe them probably because they can say to their GP Practice budget or the CCG budget - it was the consultant who decided / prescribed!!!

    In my case I was initially was prescribed Apixaban because it was twice a day and therefore more gradual than some of the other NOACs. No on warfarin because on waiting list for second ablation. I have leaking valves as well.

  • Thanks for all your replies.

    I know for a fact I have a high risk of bleeding as I pass blood in my urine constantly, I can't see it but it shows up on the test strip's at the doctors. They have sent me to the urologist 3 times over the years and they can't find anything wrong. They said it was probably due to the aspirin I take. I bruise very easily and have the odd small red blood spot bruises on the backs of my hands. The urologist said it was nothing to worry about. What other options are there available to me. Should I exercise in moderation such as walking.

    Thank you

    Roger

  • Moderate exercise is good - as long as you don't have symptoms. Rule of thumb - brisk waking - you should be able to talk and walk - if y get breathless - slow down or stop. As little as 15mins day will help as it will energize you, help your circulation and therefor your heart but also may help your mood and build muscle and resilience. Whilst you are walking look around you and enjoy, even in the city you can find something to appreciate. Focusing on something other than yourself is really important. If you are unsure then ask your GP for guidelines. Trust signals from your body to let you know when to slow down or stop. Start with small steps and just increase very gradually each day.

    I have had depression and worked through it and worked with sufferers for 20 years, only you can choose to to live, as soon as you stop living you start dying, in every sense of the word. I say that with heart and compassion my friend.

    Best wishes.

  • That should read walking not waking....

  • PS - in my town we have a variety of walking groups and my sugery is starting walking groups with an accompanying nurse for those with chronic conditions who find it scary to go out on their own - you really are not on your own. Perhaps try see if there are any such groups near you?

  • What a great idea!

  • Thanks for your replies.

    Today my gp phoned me and was not at all happy that I phoned the hospital for their advice, he said he had discussed my case with another doctor at the practice and he said it would be OK for me to take the tablets. He was a head cardiovascular consultant at the hospital, he is now the head of the surgery (the top man).

    They have prescribed me 20mg of rivaroxaban daily (xarelto).

    I'm scared stiff to take them as it states on the info sheet that they can cause serious bleeding that could result in death. And not to take if you have a bleeding disorder (which I have, micro hematutra in my urinre)

    So I don't know what to do.

    I was going to start taking them on Sunday as my wife will be home for two days, she works nights so is either at work or in bed other times. I am not comfortable to start taking them when I'm a!one.

    I know I should take them but am scared stiff. What would you guys do.

    Thank you

    Roger

  • I would (did) do my own research and then make a choice of what I was more scared of - stroke or bleed?

    All drugs carry warnings simply to inform as in the US there were a lot of litigation because some of the NOACS were prescribed inappropriately and at the wrong dosage but since that has been known the dosage was changed and if you examine the litigation you will see there were very few serious, life threatening bleeds. Y will find the same warnings on the aspirin packet.

    Aspirin and anticoagulants do different jobs by the way, aspirin is no good at preventing strokes but does have a role in other heart conditions and for people with stents etc.

    One comment - aspirin, as I understand it, has more bleed risks than the NOACs which in turn have an decreased risk of bleeds, especially in the brain, than Wafarin.

    Your GP sounds really proactive and I suspect, concerned for you rather than angry with you. I think you also need to decide whether or not you trust his judgement. If you do - take his advice - if not find another doctor who you might trust. He has obviously consulted appropriately and done a risk/benefit profile sounds good to me.

    There are no guarantees here but all any of us can do is do the research so we are informed, talk to your doctors and if you have faith in them, listen to them and decide whether or not to follow their advice.

    Doing nothing or dithering is not an option as you will only continue to worry it - make the decision one way or the other then live with it.

  • Roger. I would add that you and he should have a face to face discussion and not just a phone call and that he should explain his actions and steps and why he came to the conclusion he did. You then should put to him things you have found out about and any questions you have. Also (at the end) ask him why he was not happy that you had phoned the hospital. If appropriate you could also say you actually think that it is good to get different opinions and options (like many things in life there is no single perfect solution or option).

    Let us all know what you decide and how you get on.

  • Roger I too was prescribed apixaban last week I I'm so scared of bleeding no matter how small.im also terrified of the side effects common ones like nose bleeds and bleeding behind the eyes are they joking and all this for life!I'm a chronic anxiety sufferer and dread taking them.the thought of no antidote is awful.my quality of life since I was told ur 65 now no more aspirin and onto these well ...im constantly checking my nose dont know how long I can go on like this and yes I've had lots of cbt etc I'm scared and miserable I know how u feel

  • Hi, I have put off starting the tablets until I see my doctors on Tuesday as I am concerned about my microscopic heamatura ( blood in my urine that I cannot see) I am freaking out with worry in case I have a stroke before I see him. My score on the chd is 2, what are my chances.

    Thanks

    Roger

  • I think your chances of having a stroke before Tuesday are very, very slim, Roger.

  • Hi

    Went to see my gp today, after a lengthy discussion it was decided not to put me on anticoagulants. Apparently I have a peptic ulcer hence the microscopic heamatura. Also if I were to go on anticoagulants the chances of my evar stent (triple AAA) developing an endo leak would increase to 45%.

    He put me on low dose bisoprolol 1.25mg daily. I have to go back in one month to have my bp checked.

    Also as I only scored 2 on the chd scale my gp said at the moment my risk of developing a bleed would be far higher if I were to go on anticoagulants.

    It appears I am in permanent AF, but to be honest I have no symptoms at all. I do get a bit breathless if I overdo things but then again I have copd which of course doesn't help. My doctors and I had a lengthy discussion today and he pointed out that my pulse became irregular after they changed me from bisoprolol to metoporol. So I'm back on bisoporal again. My pulse is weird, it beats perfectly normal for about 40 beats then it will skip a beat and so on. Another thing I pointed out was that I read you had to have a 13 lead ecg but as far as I can remember my ecg only had about 8 or 9 leads.

    Thanks

    Roger

  • Hi

    Is anybody at all with AF on here unable to take anticoagulants please

  • Roger I had a chads score of one as im female no heart disease had af for 3yr.i was on tabs plus aspirin then at 65 chads went to two cos of age.my anticoagulant which I've taken a week are giving me headache and pressure im nose my cardiologist who is brilliant said come off them for a wk see if ur headaches go if they do dont take anything till my appointment end of Dec he's the boss nut I was scared and said what if I have as stroke before Dec? He said I'll be fine but I still worry my last tab will b Friday.Saturday I will be of course be nervous.i believe all he says but don't trust these nasty tabs.its awful being worried I wish u all the best

  • Thank you for your reply I really appreciate it

    Roger

  • Hi Andy50

    What anticoagulant have they put you on?

    Roger

  • Hi roger my cardiologist took me off aspirin as I've reached 65 and my chads is now 2.1 for female 1 for 65 so I'm on apaxaban 5mg twice day.had headache since I'm supposed to go off ot tomorrow for a week to see if they go

    Too scared to stay on it too scared to go off it!!

  • Thanks for your reply. I really appreciate it.

    Roger

  • I did what CDreamer did.

    I weighed up my options and I decided I'm more afraid of a stroke than a bleed.

    Saw the top man at my doctors (cardiologist) and he said I made the right choice.

    He is arranging an appointment with a EP but said it could be quite a wait.

    However he has put me on rivaroxaban (Xarelto) 20mg daily) one of the newer NOAC,S

    Is anyone else on this? Can anyone tell me what to expect in the way of side effects etc.

    Thank you for your time

    Roger

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