As I mentioned a while ago when I was first diagnosed with PAF, I was given dabigatran which caused a subconjinctival haemorrhage (the white part of the eye becomes v red). Whilst this condition isn’t serious in itself, I gather the GP might have had worries because it is near the brain. As I am CHADSVASC 1 (borderline for an anticoagulant), it was agreed this decision could be deferred until I was 65 and acquired an extra CHADS point.
However, when I saw the consultant, he said he thought I shoukd be on an anticoagulant now, asked me to consider it, and said he would write to my GP to recommend it. When I saw my GP-the head of the practice and a very competent doctor- he said that “we have already had this conversation” and recommended *not* taking the anticoagulant now. The reason he have was that the risk of “bleeding on the brain” was greater than the risk of stroke. Whose advice to follow?
Well, there's a dilemma. I found taking an anticoagulant very uncomfortable although I was 18 months past my 65th birthday when it was suggested. I had a score of 3. I was quite convinced I'd have a brain haemorrhage right away and it would prove to be a huge mistake. As I'm now five years on from that I have become, paradoxically, more at risk and less ill at ease.
Anticoagulation is a double edged sword. Stroke or bleed? Both rather bad! I felt I'd rather bleed to death than have a major stroke and so I agreed with enormous reluctance to the anticoagulation. I felt it took me away from being a normal person and resented the intrusion in my life quite bitterly. I seemed suddenly to be about fifteen years older than I really was and moribund with it. And very threatened, out of step, unsafe and insecure for a long time.
The general feeling on the forum, I believe, is quite the opposite and far more in favour of early anticoagulation. Many feel it gives a wonderful sense of protection.
in reply to
We hear on the forum of TIA and embolic stroke in members both taking and not taking anticoagulants. I can’t recall hearing here from members on ACs who have had brain bleeds without head trauma. Simply an observation, since I know it happens.
Others have been here much longer though.
in reply to
You are right Hidden and we hear very little about brain bleeds. But two of my second cousins have had spontaneous brain haemorrhages, one of them swiftly fatal at age 47. The other, who was on no medication at all and in her early seventies, was fine after treatment.
You have summed up my feelings exactly , I’m same age and the same thing happened except my score is 2!
All the figures banded about in my opinion, are backed by big pharma to scare everyone into taking the meds! Yes by taking anticoagulants reduces the risk of a stroke ,but when you study the figures they are low anyway so when you read it reduces it by 25% you are alarmed but 25% of 8 in 1000 is actually a very small amount!
The thing is, if you defy your doctor's advice and refuse to take an anticoagulant, there is no peace of mind. You feel damned if you do and damned if you don't. But with two medics offering different advice it is a difficult choice for Hidden .
If you are in the UK the National Institute for Clinical Excellence produced a patient decision aid which should be available to anyone being advised to take anticoagulation for AF. Unfortunately very few Drs bother to tell you about it , either through ignorance or arrogance!
It is a long document but it states quite clearly ,the Dr should give you an informed choice, but the ultimate decision is yours .
I recommend everyone read this before starting any meds for AF as it is very informative and will help YOU make the decion not the Doctor.
This information is intended to help you reach a decision about whether to take an anticoagulant to reduce your risk of stroke, and which one to take if you decide to do so. Your decision depends on several things that this decision aid will help explain. Different people will feel that some of these things are more important to them than others, so it’s important that you make a decision that is right for you personally.
You may have just been diagnosed with atrial fibrillation (AF for short) or may be considering changing anticoagulant treatment. This decision aid is designed for you to work through with the healthcare professional who is helping you make this decision. You might also find it helpful if you want to talk your decision over with your family or friends.
The information is based on the recommendations on anticoagulants in NICE’s guideline on atrial fibrillation. The guideline covers all the care and treatment that you can expect, and is explained in our information for the public about the guideline.
Treatment options to reduce your risk of having a stroke
Many people with AF are asked to think about taking a medicine called an ‘anticoagulant’. This is to reduce their risk of having an ischaemic stroke caused by their AF. Anticoagulants make the blood take longer to clot (sometimes called ‘thinning the blood’). This reduces the risk of a blood vessel in the brain becoming blocked by a clot. Anticoagulants also reduce the risk of blood clots causing problems elsewhere in the body. Treatment with an anticoagulant is usually long term.
You can choose whether to take an anticoagulant or not. If you decide to take one, you will then need to decide which one you want to use. This decision aid is intended to help you weigh up the options and come to a decision that is right for you.
Patient decision aid
Atrial fibrillation: medicines to help reduce your risk of a stroke – what are the options?
I found the graphs explaining the risk statistics very easy to understand. We are bombarded with this dire warning that you are five times more likely to have a stroke with afib. For a CHADSVASC of 2 the number likely to have a stroke in one year is 25 out of 1000. If an anticoagulant is taken by all those people 17 will be saved from having the stroke but 8 will still have it. This is without offsetting any bleeding risk with the HASBLED score. Nor does there seem to be any info available about the nature of the points . Did the people have strokes because their 2 points were for having serious comorbidities such as CHF or diabetes or just age and sex? There are natural differences in clot formation tendency in blood - if this were not the case all women would have blood clots when on the contraceptive pill or in pregnancy.
It is all very well saying everybody with afib should be on an anticoagulant and easy for those who have no side effects. I have already tried an anti vit K inhibitor and Pradaxa. The Préviscan (used here in France far more than Warfarin) gave me pains in the legs all the time I was on it and the Pradaxa horrible indigestion. I have no desire to add a dangerous PPI to counter the latter. Neither my GP nor my cardiologist is pushing me to take an anticoagulant. I was on the pill for 12 years and on a very high level of HRT for several years in my forties. I have never had any worries with clots. BUT I do still worry about having a stroke because of the advice I have found here. I have decided to take Nattokinase and see if I get any side effects from that.
Funny but I have a similar experience in a way. After successful cardioversion last May and still in sinus rhythm at the moment my GP keeps suggesting that I come off anticoagulants - it would help as I could then go back to taking NSAIDs for my chronic back and neck pain. I always wonder if that is because of the cost to the GP surgery as they have cut down on all medication recently and are using cheaper versions of all my medication as the cardiologist has never suggested this. Again I think my CHADS was low but has gone up this year because of my age but is still low.
I think you will be anxious whatever decision you take. Perhaps it comes down to whose opinion you consider more informed. The GP who may know very little about cardiology, or the EP who may know very little about anything else. Most of us definitely know less than either of them.
I am puzzled why your GP stopped the a/c after what seems to me such a trivial event.
It is known that GPs underuse anticoagulants ( even if it may be appropriate) because of their concern re bleeds. My own GP told me a tale of woe re an MP who died from a cerebral bleed on the steps of 10 Downing St when he started me on anti coagulants at Cons. request ( GP now retired! and GP trainee in attendance looked appalled)
On the whole GPs have a more pragmatic approach which is not always to your advantage but often is.
Medication is always your choice and I was the opposite of Rellim and disappointed when in 2011 after my first episode I was given aspirin rather than warfarin. We are all influenced by circumstances and both my parents ( Tho' I was adopted) died of a series of strokes which I don't fancy.
It is a well know fact that GPs fear bleeds and patients fear stroke. Sorry but cynical thought I am I do not accept the big pharma argument in this case. AF Association is an independent charity and we promote anticoagulation purely because here in UK we could save 8000 serious AF related strokes a year alone if we could change the way people view Anticoagulation.
I also have a risk of a bleed to the brain due to cerebral cavernomas so have been advised by consultant neurologist not to take anticoagulants. I was then offered on the NHS a Left atrial appendage occlusion device to be fitted which would stop any clots forming in that area. Although clots can form in other areas the the left atrial is the most common. So hopefully now I'm a little more protected and have some peace of mind.
Only for those who really cannot tolerate anticoagulants for medical reasons. It is a more common procedure in the US. I believe they are currently trialling it in a few of the major cardiac units in the UK. You can ring the AFA or look at their website for more info.
Watchman has been around for several years. There was an earlier Amplatzer that was superseded about three years ago when they did trials at 10 UK hospitals.
I applied and the makers said that I was a suitable candidate but never heard back from the hospital that I had also contacted.
By the time I had it done privately the EP had already done 110 procedures.
Not really an alternative as completely different. It's a device that basically plugs the left atrial appendage so no clots can form in there. It's more of an alternative to anticoagulants if you're unable to take them.
Yes it's very straightforward but not always available due to funding so your consultant will be able to advise you. They fit the device via a vein in the groin but under General anaesthetic as they need to check for any clots already in the atrial appendage with a TOE first. You can Google or watch YouTube video of Dr Mark Earley performing the op with Amplatzer amulet devise.
Very straight forward and takes about an hour as a day surgery case if done in the morning. Mine was done late afternoon so I was kept overnight and went home by train. Had a echocardiogram a month later to check it was well seated.
I was on Plavix for a moth and aspirin for six months after it though some EP have different opinions on what they prescribe.
It's not an alternative to ablation but is well worth having in my opinion to get off Warfarin or NOAC's. In my case with an artificial aortic valve NOAC's were contra indicated and I was never happy with the bleed risks associated with Warfarin.
Neither Watchman or Amplatzer amulet are readily available on the NHS due to cost at the present time. I had my Amplatzer fitted privately in April 2017.
AFA are supporting the trialing and there is a possibility it will be an NHS option in the future. It could be a high bleed risk would qualify to be included in one of the trials? Hidden Worth investigating?
Most definitely worth investigating. I will raise it when I eventually go for my assessment at St Bartholomews. At the moment I have not had notification of a date for the assessment from them (the referral was sent nearly a month ago). I rang the hospital and they said they had not received it, but my local hospital are adamant that it’s been sent twice. I thought hospitals were supposed to respond fairly quickly to referrals, even if the date for the appointment is quite a while ahead.
Frankly I would be a LOT more proactive. Get the info about the trials - see if you meet the criteria - see where they are doing it. Talk to your GP about it & ask his opinion - he may be able to refer you directly. Get the name & no of the specialist you are referred to & their secretary’s no - ask where you are on the waiting list.
Unfortunately I know many people who wait a long time so don’t assume anything, chase it yourself.
Is it Dr Lobo that you see ? I tried to get on one of his hypertension trials some years ago but was too late. I then applied to get on one at Imperial College and they diagnosed my faulty aortic valve so something came out of it as it might not have been diagnosed until too late.
Is that a horse in your rather dark picture? We had a potential Chaser who beat everything on the gallops but when asked for final effort in races slowed right down due to AF so retired as too expensive to fully diagnose and treat..
I have been taking an anticoagulant since I was 57 because at that age my cousin, who has AF as well, had a series of TIAs and I reckoned my risk might be higher because of that. My doctor says that in my shoes he would be doing the same thing. I think you do tend to be very influenced in these decisions by family experience, and yours is of bleeding rather than ischaemic stroke. Where the advice is so conflicting, I think I'd do what I was most happy with.
GP’s worry about bleeds - EPs & Patients worry about strokes. Bob’ already said that but worth repeating.
Even though most competent GP may not be up to date with latest thinking. First line therapy for anyone with AF whatever the frequency is currently - anticoagulation. You need to decide and stay with it.
Yes, but the GPS input is new (from last week). Previously, a different GP had said it wasn’t really necessary given the CVasc 1, but now my own GP says-contrary to the advice of the consultant- that he doesn’t want to prescribe it. I would have to fly flat in the face of the GP’s advice to obtain it.
Your decision - so go against the advice of your GP if you want the anticoagulants. You can do that you know. You can also argue your case armed with NICE guidelines and the information from the AFA.
I really don’t think any GP will go against the written advice of the specialist. If he is refuses to prescribe - ring the AFA fo advice of what to do. They will support you. It is your life.
The GP is extremely able and has been my doctor for around 15 years. On nearly all of the occasions when I have disagreed with an assessment of his, he has turned out to be right. I would be reluctant to jeopardise the relationship with the GP. It’s also the case that he wasn’t the one who originally prescribed the dabigatran, so it’s the view of at least 2 GPs that I should not at present be prescribed anticoagulant. I don’t think they would refuse if I insisted that they reverse the decision.
The key point to me seems to be that there is a significantly high probability of bleeding given that this has already occurred on taking the anticoagulant. This may indeed outweigh the risk of stroke (presently about 1 in 80 per year). So the decision of the GPs may be correct. They are very experienced and I doubt they would have disregarded the advice of the consultant (who didn’t explain his reasoning to me) lightly. My inclination is to wait until I have the assessment for ablation at St Barts and discuss this in depth with the EP there. Presumably, they would have to broach the question then as I think I would have to be anticoagulated to have the ablation.
Come to think of it is that correct? Can they do an ablation without anticoagulation if the patient cannot take it because of the bleeding risk?
Did you check with the practice that they had received a letter of recommendation from the consultant that you should have anticoagulants? It would be a rare GP, I believe who would go against such advice.
I am 64, Birthday in a few months time, and score only 1 on Chadsvasc, but my Cardiologist was incensed to hear I’d been refused on age basis & wanted to know if the GP thought anticoagulation was a Birthday present?!!
I saw a different GP and was prescribed Apixaban, happy to take my word for the Cardiologist’s advice, before receiving his letter.
We have all said many times on here - GPs tend to over estimate the risk of bleeding and underestimate the risk of stroke. I feel confident and protected.now.
You might want to discuss the subconjunctival haemorrhage with an optician - mine was very helpful in explaining the odd visual disturbances I had for a few weeks when first on my anti- arrhythmic drug, Flecainide.
Best wishes
Pat
in reply to
GP doesn’t think that an eye specialist could predict whether there would be bleeding.
The letter was received. It said that I should consider it and let the GP know. When I raised it with the GP he advised against.
Have you read my article above re the NICE GUIDELINES.
If you are in the UK the National Institute for Clinical Excellence produced a patient decision aid which should be available to anyone being advised to take anticoagulation for AF. Unfortunately very few Drs bother to tell you about it , either through ignorance or arrogance!
It is a long document but it states quite clearly ,the Dr should give you an informed choice, but the ultimate decision is yours .
I recommend everyone read this before starting any meds for AF as it is very informative and will help YOU make the decion not the Doctor.
This information is intended to help you reach a decision about whether to take an anticoagulant to reduce your risk of stroke, and which one to take if you decide to do so. Your decision depends on several things that this decision aid will help explain. Different people will feel that some of these things are more important to them than others, so it’s important that you make a decision that is right for you personally.
You may have just been diagnosed with atrial fibrillation (AF for short) or may be considering changing anticoagulant treatment. This decision aid is designed for you to work through with the healthcare professional who is helping you make this decision. You might also find it helpful if you want to talk your decision over with your family or friends.
The information is based on the recommendations on anticoagulants in NICE’s guideline on atrial fibrillation. The guideline covers all the care and treatment that you can expect, and is explained in our information for the public about the guideline.
Treatment options to reduce your risk of having a stroke
Many people with AF are asked to think about taking a medicine called an ‘anticoagulant’. This is to reduce their risk of having an ischaemic stroke caused by their AF. Anticoagulants make the blood take longer to clot (sometimes called ‘thinning the blood’). This reduces the risk of a blood vessel in the brain becoming blocked by a clot. Anticoagulants also reduce the risk of blood clots causing problems elsewhere in the body. Treatment with an anticoagulant is usually long term.
You can choose whether to take an anticoagulant or not. If you decide to take one, you will then need to decide which one you want to use. This decision aid is intended to help you weigh up the options and come to a decision that is right for you.
Patient decision aid
Atrial fibrillation: medicines to help reduce your risk of a stroke – what are the options?
My anticoagulant nurse went through all this with me when I was first prescribed apixaban 2 years ago. It was informative - just wish there were better painkillers I could take with the apixaban. Still you can't have everything!
The following statements refer to the process of the taking of anti coagulants for each CHA2DS2-VASc Score
1. DO NOT offer stroke prevention therapy to people aged under 65 years with atrial fibrillation and no risk factors other than their sex (that is, very low risk of stroke equating to a CHA2DS2-VASc score of 0 for men or 1 for women)
I read this as do not offer as bleeding risk is higher than AF related stroke risk.
2. Anticoagulation
anticoagulation may be with apixaban, dabigatran etexilate, rivaroxaban or a vitamin K antagonist
3.CONSIDER anticoagulation for men with a CHA2DS2-VASc score of 1. Take the bleeding risk into account
I take the term CONSIDER that the consultant retains the authority and will make a judgement in the light of the patient as presented to him. But it is not mandatory to OFFER and therefore the consultant would not drive the patient to take anticoagulants as he has no professional duty to do so. The patients has to choose to say yes.
4. OFFER anticoagulation to people with a CHA2DS2-VASc score of 2 or above, taking bleeding risk into account by discussing the options for anticoagulation with the person and base the choice on their clinical features and preferences.
The consultant has to OFFER anticoagulation and it is for the patient to accept or otherwise and he discharges his professional duty by making the offer. The patient has to refuse.
Coming back to your case your consultant would appear to be getting it right as you are an intermediate risk so your Consultant ask you to CONSIDER. ie in 3 above your choice . Your AF has to be attached to some co morbidity, say High BP, and this is a major cause of strokes (of round 50%).
The CHA2DS2 -VASc score is quite a blunt tool and fails to take into account the amount of time you are in AF. ie the AF burden. If you have AF for most of the time its reasonable to consider that anti coagulation is the way forward if your Score is 1 . However if your AF burden is low say 10% and below then your likelihood of stroke is lower than being in AF most of the time. This factor should be something you should CONSIDER.
In my own case I have a score of 1 due to my age alone and had AF for many years but my consultant in conjunction with me does not CONSIDER I should be taking an anticoagulant. Another discussion will take place as and when my score rises to 2.
I have PAF, with episodes (at the moment) roughly once a month. So it may be that the GP feels that this isn’t yet sufficient to warrant the risk of an anticoagulant given the risk of bleeding. That is, he assesses the bleeding risk as presently being higher than the stroke risk (ie the AF burden is not sufficiently high as you say in your post)
I did have a look at the guidelines. As in my case there has *already* been an occurrence of bleeding, it is felt that this substantially raises the probability of further bleeding on taking an anticoagulant. Hence the decision is difficult.
Hi, GPs tend to be risk averse because they are ultimately responsible for your treatment despite the consultant's advice eg my consultant suggested Bisoprolol even though I have daily treatment for asthma. My GP called me in and asked if I really wanted to take it because she was not happy, the buck stopped with her if I had a fatal asthma attack. I said I felt anxious about taking Bisoprolol and would prefer to take Diltiazem, the alternative choice, so we were both happy. The decision is yours but your GP is someone with whom you have a long term relationship so you may take that into consideration.
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