Another question for members here. I am interested to find any member who ever had a sensible discussion about anticoagulation with their doctor whether GP or EP . What I am interested in is any chat regarding CHADSVASC which may or may not have used any PDA , fact sheets, CAREAF reference material etc. where you both made the decision together after reading and discussing. In other words I am trying to find out if guidelines are being followed or not.
If you have then please in addition to commenting here PM me with full details.
I don't mean doctors telling you that you are too young by the way! lol
Thank you again.
Bob
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BobD
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Hi Bob - Did not happen for me... I was told there was a Chads and the score I was and told I had to start Warfarin immediately. I was not given a choice of any or meds and I was given no information by the Dr I saw and that I required a very prompt Cardioversion. Both my husband and I were shocked at the time, as up until that hospital appointment, I had been told for 6 years there was not a problem that needed any intervention. The "bedside manner" was non existent. I was given no information at all about my condition and my GP advised me where to look after the event. This occurred in 2014.
The first my husband was aware of having AF was when he was an ambulance job and was admitted to hospital. After four days of fast AF they discovered he had a clot in the atrium and was given a choice of Warfarin or Apixaban and sent home.
Although he hasn't had another episode of AF he's been kept on Apixaban.
I guess the Chadsvasc doesn't apply in his case. It was put to him in a nutshell - anti-coagulate or die, which was probably true.
The hospital cardiologist told me he was prescribing Apixaban as he preferred it to Warfarin as 'my score' was 2. No other explanation was given and I got all my information from the AFA website after I was discharged.
I found my GP practice very supportive when, after no discussion whatsoever, my cardiologist told me I was going to take warfarin. However, all they did was to frighten me, eventually, into submission. I saw various partners - my own GP was not available - and they were patient and very helpful and encouraging, but it was almost a brick wall. At the time (almost 2 years ago) they did not support the NOACs. Warfarin or stroke / death was the choice. In the end I was leaned on and persuaded - by everyone except my husband - along a route I have not found easy.
At no time has anyone suggested that my fear of being a bleeder and putting myself at extra risk with anticoagulation could be rational.
I have been self dosing for over 20 years, and almost from the start it was me who gets to take the decisions. Basically, there is a balance of risks. The consequences of a stroke can be fatal or severe life restrictions. In most people the consequences of bleeding are almost always minor. Therefore I follow the medical strand of opinion which says, better to run your INR higher than lower, ie thinner is less risky than thicker (again, for most people).
Self dosing is not that difficult, if you allow for a wider range and rarely intervene. I have several times in my records seen 2.5 or less then 4.5 or more, and this on the same dosage. Then, following the pattern of 'regression towards the mean' I have a few good results ie 2.5 to 4.5, all without changing the dose.
I have a suspicion that it is in the drug company interests to set 'narrower' acceptable INR ranges, so making it extremely difficult to comply because natural variation is wider, therefore people give up on Warfarin. Therefore I still use the older standards where a wider variation is accepted.
I am more likely to intervene with a low INR than with a high INR. With low INR it takes more warfarin to make a difference. My first step is to test again 5-10 days later: I only take two poor results as a sign I need to do something. Then I would boost my INR by 1mg a day for 2-3 days then go back to normal, thus nudging it up, test 5-10 days later. Only if that fails, I increase the dosage. This mechanism, combined with accepting a wider zone, makes dosing easy.
I would encourage you to accept Warfarin. It is well known, most doctors know it, side effects are few and easy, and if you need surgery it is reversible.
One more thing, I saw somewhere that the first year on Warfarin was more likely to produce minor bruising, but your body gets used to it. I do a lot of DIY and regularly bruise myself and it really is trivial.
Guidelines for INR in AF is 2 to 3 although in 2013 HRC meeting we were told by an expert in INR testing that due to the inaccuracy of the method 2.5 to 3.5 might be safer and that little risk exists up to INR 5. This is not to condone these high readings but to explain how little risk there is.
Can we also stop this "blood thinning " story. Anticoagulants do not change the viscosity of blood in any way. What they do is reduce the clotting ability. Nothing to do with thinning at all. It can be argued that spontaneous bleeds are unlikely without outside intervention ie cuts, burst blood vessels due to high blood pressure or even stomach ulcer. Some people read the term blood thinner and imagine that you can leak through your skin because of this erroneous term.
Anyway we are going well off topic here as I was trying to establish if doctors were following guidelines when discussing and prescribing anticoagulants.
I had a follow up letter from my cardiologist saying he would be speaking to me at my next appointment about anticaogulation as I would be 65 by then. As a note to himself at the bottom of the letter in small print it said CHADSVSC score would then be 3.
My husband googled it to find out what that meant. It was explained at my next appointment and we discussed warfarin and NOAC. I said I wanted a NOAC and was told I needed to ask my GP as they would be funding it. I had already asked my GP who had sent me local guidelines about warfarin and NOACS.
I had no trouble being prescribed Rivaoxaban. However I am very proactive with my heart health, not sure what would have been the outcome had I been a less proactive person.
Incidentally I am on a hospital panel currently devising a decision making aid on anticoagulation for GP's to use locally with their patients.
Hi Bob, this particular decision making aid is in the process of being finalised here for our local GP's. I was asked to join the panel by a local GP who came to our forum about a year ago to help put this idea together, he had funding from somewhere for it (dont recall where).
I wonder if it is a duplication. I have seen the final draft but I understand more funding is being awaited before it is launched here.
I've posted this before so sorry to repeat myself but, for the record, the Cardiologist did mention there was a 'score' chart and as I was over 65 and female I needed to be on an anticoagulant. He said the new ones had a good success rate (or words to that effect) and he'd been prescribing Apixaban for patients for a while. However, I was to make the decision on which one I would rather be on. When I queried it further he said to discuss it with my GP which I did. She simply said that Apixaban wouldn't require a monthly test so that's what I'm on. To this day I've no idea why it doesn't need a test or in what way it differs from Warfarin but that's for another day!
I, also, was very fearful of taking any anticoagulant but there was no discussion and basically it was 'do or die' which may be true but it's not particularly helpful for the patient.
I think I've probably covered this before but here goes.
I was discharged after valve replacement three years ago with AF, a CHADS score of 0 and on warfarin and meds for AF. Had to find out for myself what CHADS was when I noticed it on the discharge summary. CHADSVASC score was 1 (for being female, so didn't count).
GP subsequently allowed me to change back to aspirin (which I had been on pre-op for many years at cardiologist's advice). All at GP surgery were under the impression that warfarin was only temporary for me - standard procedure for the type of operation and valve that I had. The AF barely got a mention, other than to continue with betablockers.
Current cardiologist said that neither CHADS nor CHADSVASC applied in my case due to structural condition of my heart and wanted me back on anticoagulation for life. Now on Rivaroxaban. GP was still dubious, kept saying "but your CHADS score is 0", but complied.
Never seen any reference material etc.
Pat
Bob;
I've discussed my CHADSVASC with two EPs this year, giving scores of 1 and between 1 and 2. In neither case was literature used. The EP who scored me at one didn't mention anticoagulation medication; he'd previously prescribed dronedarone for my PAF that caused pulmonary toxicity, so that may have been an influence. The second EP preferred warfarin as an anticoagulant as vitamin K could be IV'd to arrest a bleed. I should add that I'm a bleed risk. Discussions with GPs at the local Health Centre indicate that they are told to "aggressively" investigate AF and anticoagulation is part of that. They didn't discuss or show me literature, but they know that I'm a bit OCD when it comes to health issues. When I was in hospital I was given 100ml clexane injection each day whilst the dose for the rest of the ward was 25ml. The discharge letter after the second admission made a point of saying that I "was not keen for anticoagulation despite multiple discussions re risk/benefit"; there was no literature or any meaningful discussion.
A forthcoming booklet on anticoagulation guidance for AF patients is being prepared. Any material or web site calculator will need to illustrating the risk of stroke in an accessible way without medical jargon. It's not clear to me how stroke risk changes over time as I understand that studies have only considered the risk for one year. That has implications if the patient is 80 rather than 40.
Hi Bob, After many year since diagnosis I was suffering with days that seemed to be filled with ectopics and query bouts of AF. After a very unsatisfactory consultation with cardiologist who told me to carry on with Aspirin( this was April last year), I went to see my G.P who said I should be anti coagulated after she did CHADS score of 2. I am 59 female and had hypertension well controlled. She offered me Warfarin or Dagabitran. talked things through with her went home to think about it and then chose Warfarin.What bothered me most was when I went to see another cardiologist he asked why I had been put on Warfarin. Hey ho, as stated on here I take it reluctantly ( tummy never settled) but reluctant to change as after many months of yo-yo INR I seem to have settled down. Best wishes Kath
Hi, when I'm was discharged from hospital last December with a diagnosis of AF, the cardiologist said I had to take Bisoprolol and anticoagulants as I was at risk of stroke, didnt mention there was a score system or gives me leaflets etc. Because I worry a lot I decided to find out things for myself and paid privately to see an EP at Wythenshaw Hospital, then I found this site thankfully, so it looks like we have to find out things for ourselves!
In my case, my EP ignores the CHADS system. In truth I have not asked him in any great detail because I'm not that sort anyhow and wouldn't take it all in. As I've said before, I've been anti-coaged for a long time, will be probably for life and my score has only just gone up to 1 as I have reached 65. I have no other condition, or family history indicating a higher risk of stroke than the average person.
I have asked him many times whether I should be on Warfarin, and he has never changed position.
Thank you all so very much for taking the time to share your experiences. My principal appreciated it greatly even though it only proves what we feared. We have a very long way to go yet.
I saw Ep about my PAF was put on Bisoprol and aspirin that was 2 yrs ago still on . He did the CHADs score said I was 0 even thou female as they don't add 1 anymore for that reason said don't need to be on warfarin as only 50 and low risk I have asked since but still says not needed ! Risk of bleed same as stroke 1.3%
Dear Bob, my EP talked about CHAD score and even though my score was low, he said given the changes within my heart he thought I was high risk so started me on Rivaroxaban. This discussion took place about six months after I was first seen by him, and about 9 months after I was first diagnosed with AF. Please let me know if you would like any more details.
My G.P. Followed NICE guidelines on my first visit.I only found this out when I read the guidelines later.I was completely ignorant of AF,and had a discussion about the way forward for me with my GP and was invited to use anticoagulant,as recommended. I discussed which one,and left with a prescription for my choice. I had already researched on line.
My EP has discussed the risk assessment used for AF and stroke risk each and every time I have asked. He is ver patient with this constant worry I have. I have explained to him all of the information I read on this forum from volunteers and AF sufferers including the very frightening statements that AF strokes can leave you 'drooling in a corner if you are lucky' and how we are 5 times greater risk than others to have a stroke. My EP stands by NICE guidelines as he says my risk of bleed is also there and I am such a low risk of stroke and this has to be weighed up. I also spoke to an arrythmia nurse who felt I should listen to my EP and that maybe some of the advice on this forum is scaremongering and not helpful for me. I also spoke to the therpaist I am seeing and showed him the info I have read on this and he too feels it is scaremongering and while there is a place for raising awareness, subjective advice can be put out to the majority when it is based on personal fears and this has been extremely anxiety provoking for me since I am relatively new to AF and just learning. Scaremongering or not, it worked, as I worry about stroke on a daily basis now. But in answer to your query...my EP has always discussed and explained up to date research wih me and I accept that from a clinical governance perspective, these decisions have been correct in my case and based on evidence.
Hi Vony, interesting and thought provoking as your comments are, my question, which was some four months ago related to some research for an outside body to see if guidelines were being followed and not anything to do with the relative merits of not of anticoagulation. The point is that under current guidelines these decisions should be made after due discussion and explanation WITH THE PATIENT and not imposed in any way shape or form. There are those who even after such discussion wish to continue on anticoagulation even with low scores and that is their right There should be no scaremongering other than trying to make sure that everybody understands both the risk of anticoagulation and also of not taking such drugs. If you read any of my recent posts on the subject you will see that I mention both CHADSVASC and HASBLED which assesses your risk of serious bleed on anticoagulation. Whatever my personal feeling I think it correct to put both sides.
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