Interpretations CHADSVASC: I am in the... - Atrial Fibrillati...

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Interpretations CHADSVASC

Sugarlump profile image
15 Replies

I am in the ' won't prescribe anticoagulants ' bracket. I am on Clopidogrel and twice GP says that is good enough as it acts as an anticoagulant.

When I checked on CHADSVASC there is no question regarding family history.

My mother who had 2 DVT and Gmother died from lung clot. Mother also had slow /thick blood, whatever that means and vascular problems. She like me is Rhesus, if that's relevant ....

So, are past generations health not relevant ? If this does predispose me should there not be that question there ?

Currently, based on female and age I have a 1.3 risk. Clearly with family history I am hitting heady heights on the scale.

If it isn't relevant that's fine, but am genuinely anxious if it does because I feel I already feel under protected and this really would put me at huge risk.

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Sugarlump
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15 Replies

I have a CHADS/CHADSVASC score of zero and my EP has had me on aspirin then warfarin for 10 years. Even after a successful ablation resulting in zero AF, zero drugs he stilled kept me on AG's. I simply don't understand CHADS and the new at all and they are both a waste of time for me and, unless my EP is wrong, misleading. Neither even ask if you have AF !!! No way would I take it from a GP that I didn't need anti-coagulants.

Beancounter profile image
BeancounterVolunteer

Hi Sugarlump

I can say quite simply that your doctor is wrong if he describes Clopidogrel as an anti-coagulant, it simply is not it's an anti-platelet drug as I am sure you know, and like aspirin should not be prescribed solely for anti-coagulation in AF patients. Those are the NICE guidelines, and those are what the doctor should be following. Although the guidelines are only empthatic on this with a score of 2 and above.

Personally with a CHADS score of 1 (and that only for the last 4 months I was 0 before) I am very happy to take warfarin, if I had a family history of clotting and DVT then personally I would be hammering down the door of the surgery to get warfarin or similar prescribed if I was not on it already

The problem is that AF begets the worst sort of clots, the ones that cause the most severe strokes, and the ones that really do long term harm, not TIAs but full blown strokes. Aspirin may help prevent from TIAs but it's not the ruddy platelets that will give you problems with AF, it's a part of the heart chambers where the blood is prone to pool due to the poor rhythm and can form clots that then break away into the bloodstream, only a full blown anti-coagulant will help with that.

If you feel underprotected, if you feel at risk, quite simply go back to your GP and ask him why he thinks your drug is suitable. If necessary quote NICE guidelines.

Be well

Ian

Sugarlump profile image
Sugarlump in reply toBeancounter

Thank you Beancounter. Yes I have been to the GP hammering, twice last week, and quoting NICE.

Also at my CT angiogram last week, as my HR plummeted to 37 then BP belted up to 144.... ' we say Clopodrigel is an anticoagulant for the purpose of AF '

I don't know how else to protect myself. Both GP and cardio say Clopodrigel is sufficient. I always come out feeling they must think I am a stupid google groupie and should not question them.

With one hand they accept the NICE report but dispute me saying, no, it's an antiplatlet, I need anticoagulant. They continue to say clopidogrel does the work of an anticoagulant.

Also even if I can get GP to agree they won't change unless directed by Cardio. Getting an appointment with him in the near further will be akin to finding those hen's teeth !

In the meantime I am unprotected, at risk... And could become a statistic.

i think this is one reason why I post here, to read that I am not going mad over dramatic. Only thing keeping me sane at the moment.

Beancounter profile image
BeancounterVolunteer in reply toSugarlump

Hi sugarlump

I find their reaction to your questioning really annoying if I am honest, you at least deserve an explanation as to why they consider NICE guidelines to be wrong in your particular case, and unless there is another underlying heart condition they are trying to deal with by way of an anti-platelet then they are almost certainly not able to give you such a reason.

Wht not ring the AFA helpline tomorrow?, they have come across this many times and will be happy to talk you through it, and also to suggest next steps.

Be well

Ian

Sugarlump profile image
Sugarlump in reply toBeancounter

Thank you.

I have had and medicated for angina for 10 years, with no antiplatlet or aspirin until 18 months ago when they put me on clopidogrel so can't be for that.

Although I remember when they first prescribed that they said " oh you should really of been on some form of prevention all this time "

I am just told not to worry as clopidogrel is what they give to patients who have had cardiac surgery etc so is good for the job...

I shall take your advice and call AFA tomorrow and see what they suggest....

Sugarlump profile image
Sugarlump

Opps forgot sorry.... Can a GP make the decision to put me on anticoagulants of his own back or is it true they need Cardio or EP to initiate this...

Loo53 profile image
Loo53

I think the GP can although my EP automatically assumed I was on an anticoagulant and then stunned when I told him I'd never been offered them at all since my last serious AF attack! The cardiac specialist GP at the surgery said I was CHADS 1 and never offered them then when they were TOLD to give me them by the EP by letter they tried to dodge out of that. You would think with your family history it went without saying.

cat55 profile image
cat55

Hi Yes your G.P can prescribe anti coagulants ,mine did after cardiologist said carry on with Aspirin! I have to say i was happy to carry on with aspirin till I came across this forum and realised my G.P. (who had mentioned warfarin 12 months before, big no from me) was right. Hope you get this sorted. Best wishes .

AnticoagulateNow profile image
AnticoagulateNow

My blood shouldn't clot Sugarlump as I'm on warfarin but, by golly, you've certainly made it boil!

Unless your GP can give you a good reason why you shouldn't be on anticoagulants - and it would have to be really good - I think it's time for some urgent tactics. You should now be telling your GP that having visited the AFA website and this forum you are now terrified, yes terrified, that you are not on an anticoagulant as recommended by NICE for your condition. This fear is becoming all-consuming - you cannot sleep, you have begun to feel symptoms including occasional blurred vision, dizzyness, headache and you cannot understand why you are not receiving the protection of an anticoagulant. This should do the trick, after all GPs are responsible for their patients' wellbeing in all respects, and you are clearly not a happy bear.

If he's not arranging an appointment for you at the warfarin clinic there and then , then this clown of a GP needs exchanging for a better one. Tell him that your husband/wife/partner/other relation is so furious that contrary to NICE guidance you have been left unprotected, that they want you to change your doctor. They are also talking about taking legal action for medical negligence should anything happen to you in the meantime.

This isn't for everyone. Depending on your personality, you may find the above too difficult to perform - and it is a performance - but you really shouldn't be tolerating poor care when the outcomes can be so serious. A speedier tactic is to simply go to A&E and tell them you've just had a strange experience. A little earlier you had a very bad headache and some numbness in the left side of your face. It's gone now but you were concerned that you might be having a stroke. Tell them you have AF and are not on anticoagulants. From that moment on, I promise you, the care you receive will be first class.......

Some on here will say, "You can't do that!". I would say, the end justifies the means with something as important as this. What's the alternative?

CDreamer profile image
CDreamer in reply toAnticoagulateNow

For once, anticoag, I agree! You need some urgent tactics here and if plain reason and logic doesn't do it, then time for the fear tactic.

I think however I would be a little gentler (or maybe just more manipulative?) and ask, very politely, if your GP and/or cardiologist could give you a good reason, in writing, why they think anticoagulants are not indicated as it is contrary to the NICE recommendations and you would like to be reassured that they have your best interests at heart, after all you would need the compensation from a negligence claim if you did have a stroke.

Keep fighting and hope you eventually get the treatment you need. You are definately NOT over-reacting, your doctors are under reacting.

I agree, get them to put it in writing and explain politely that this is for your relatives should they need to take a medical negligence case against the GP/cardio if something should happen to you. That will make him/her think - I'm sure they won't be willing to stick their necks that far out...

Lis

Offcut profile image
Offcut

nhlbi.nih.gov/health/health...

Explains thick blood.

We are all Rhesus it depends what group you are in + - A B O Etc. Rhesus was named from the monkey they tested to find all this out.

Previous family conditions may or may not have an affect but it maybe a good idea for a blood test to confirm it.

Be Well

Sugarlump profile image
Sugarlump in reply toOffcut

Oh my word !! I had no idea offcut, thank you for that link.....I didn't realise ' thick blood ' was a condition in its own right and this is now all very scary.

Don't worry I appreciate the link and honesty, rather that than the fog The NHS has kept me in and I am a very grounded person and rather than throw me into a total panic has totally focused my mind.

This is almost worse than the DVT's in my mind, certainly as important as and indicative of risk.

I was adopted and found her 12 years ago hence finding health history first hand. She is Rhesus Neg ( B I believe ) and I was her first born in the ' blue baby era. She needed a transfusion after I was born and I think I remember her saying I needed blood too ( but could be confused on that )

I am A Rhesus Neg.

Thank you so much for your reply, really.....

Offcut profile image
Offcut

I am O-

Delphetta profile image
Delphetta

Can you change your doctor, or see another in the surgery? NICE recommends Warfarin or rivaroxaban for AF. And if you take one of those and it doesn't suit you should be able to try the other. Sometimes GP's don't want to prescribe because some drugs cost more. Very frustrating, hang on in there and keep pushing. Best of luck.

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