Chad score of zero; no more anticoagulants?

[Cigarboxblues]

I’m now in limbo!

As usual I went online, to re-order my prescribed anticoagulant (rivaoxaban) but had disappeared from my Patient Accesss login (a Uk site used for communication to GP etc)

I rang the surgery (prescription secretary) and after a bit of a search thru my data was told that there was a letter from the practice to the cardiologist consultant, to ask if this patient (me) should be taken off his anticoagulant (because a recent Chadvasc score review found (my) score to be zero). The reply from the consultant said “yes, stop them” (note 1)

Whilst on the phone I asked for the emails which were duly sent to me.

Now the fact that I’ve had no interaction with the hospital or GP surgery for well over a year means that the Chad score was at best a ‘guess’ (in my view). But. I’m happy to be off pills. But. Not life saving stroke prevention pills; if I need them obviously.

So I’ve emailed (via the kind receptionist) my GP to ask why…

Why was I not informed of the review?

Why was I not informed of the consultants advice?

Do I stop the beta blockers too?

Can I have confirmation about what’s going on now and any future reviews.

So I anxiously await the reply.

Note1: The consultants reply was on the 24/2/22.

Note 2: my paroxysmal Afib has been steady at 1-3 events every two weeks lasting between 3 and 9 hours.

Note 3: my average heart rate is 53bpm (iWatch data) but dips to under 40 at times when I’m chilling 😎. (2.5mgs Bisoprolol daily)

So when’s the ‘normal’ time for a Chadvasc review and does it include the patient ever?Answers on a postcard 🧐

[BobD Volunteer]

In my view there should be no such thing as a CHADSVASC review. You cannot remove a score once given. So for example if you scored 1 for high blood pressure and went on tablets to control this, you still score1 even though you don't have high bp. Unless you have found a time machine you can't alter age downwards so what the ***** are they thinking about? Stroke risk is not cntrolled by the number or frequency of AF events so somebody is playng with your life. Bang some desks and educate people. If you had a risk before you still have it.

[Cigarboxblues in reply to BobD]

I’d not thought of it that way and you’re right. There’s no time machines and no reversing out of AFib.Thanks for your insight. 👍

[Hidden]

Totally agree with Bob, take a look at the link below from the creator of CHADS and you can see that none of the factors which produce a point(s) are likely to just disappear. I guess it’s possible that hypertension can reduce naturally but reductions due to medication do not count. The risk of getting this wrong is enormous so please have a meaningful discussion with your Doctors……..

mdcalc.com/cha2ds2-vasc-sco...

[Cigarboxblues]

Thank you. I will have a look. 👍

[Kaz747]

I agree with Bob and Flapjack.

I’m a 57 yo woman so I don’t meet the age criteria. I get a point for being a woman and even though my BP has been perfect for a few years, I have had a problem in the past (mainly in my pregnancies). My EP says ANY HISTORY OF HIGH BP gives you a point. So, look at what gave you the score necessary to go on anticoagulants and if that hasn’t changed (and you don’t have a time machine, as Bob says) it shouldn’t change.

[Cigarboxblues in reply to Kaz747]

Will do? And I’ll update this thread if and when I find out. Thanks

[secondtry]

TO DO TODAY: Book a private appointment with your favoured cardiologist to discuss frequency of AF, anticoags, drug options and lifestyle changes. It is costly but I would say well worth it in your case.

[Ascb]

Oh my goodness, that really isn't acceptable is it? My GP took the decision a year or so ago to stop my anticoagulant because my reading 'didnt look like AF' to him. Honestly, you couldn't make it up.

An appointment with the cardiologist put him right and they were restarted.

It's very stressful having to fight for the right health treatment.

Complain to the practice manager, alterations shouldn't be made without involving the patient.

Let us know how you get on.

[Cigarboxblues in reply to Ascb]

I’m sort of glad things like this are happening, though a little weird.

[Ppiman]

You don't give your age, but I think over 60, anticoagulants are always given. I am 68 so stuck with them. It's a pain as it seems even simple ops are made more complicated by my being on them.

Steve

[Cigarboxblues in reply to Ppiman]

Not quite, I’m nearly 58 years young

[Ppiman in reply to Cigarboxblues]

My reply didn’t mean to suggest you were over 60, poor grammar, sorry. I was meaning to say that once a person reaches 60 and has even a single boot of AF, I think anticoagulants are the norm.

Steve

[Cigarboxblues in reply to Ppiman]

No I didn’t think that, I’m happy that you replied and added to my understanding and rehab after this strange twist in my medication.

[Tomred in reply to Ppiman]

hi ppi my ep says i wont be put on anticoags until im 65 im 62 now,and i never thought id say i wish i was on them now.

[Ppiman in reply to Tomred]

It might be 65 and I'm getting mixed up. The problem with them , as I see it, is when an op is needed, then the surgeon has to take special care (mind you, that might not be such a bad thing!).

Steve

[Cigarboxblues]

Yesterday I got lucky and a wonderful GP surgery receptionist got me a booked (call back) appointment PM on Monday to have a word about the prescribed missing drug. She also got the author of the original letter (about the Chad score review) to be the caller. Result 👌

[Jetcat]

I was taken off anticoagulants too after they realised my score of 1 for high blood pressure was actually only high when sat infront of a nurse. (White coat syndrome)All my BP readings in hospital stays and at home are normal. So I was knocked down to zero. I actually told my EP and GP that I wanted to stay on anticoagulants against their advice because I felt safer.

But they both said no because the risks outweighs the benefits.!!!!

So here I am 3 years later wondering wether it’s a good thing or not.????

[Cigarboxblues in reply to Jetcat]

That’s interesting. The risks of taking anticoagulant are few bit serious but so too is not taking them and worrying about a possible stroke.If it’s a medical decision it good, if it’s a matter of financial prudence it’s not ok.

[Jetcat in reply to Cigarboxblues]

That’s true. I’m hoping it’s nothing to do with money. and on my next visit I may ask yet again

[theohappy]

Although you don't have a lot of AFib episodes the ones you do have last for several hours. At the very least I would think you should be on anti-coagulants. I had one very minor stroke and one massive one with paroxysmal AFib. I was not on anti-coagulants, just aspirin, with both of them. Cardiologist thought that was adequate. He was wrong.

[Cigarboxblues in reply to theohappy]

Sorry to hear that theohappy.

Your point and the whole point is that preventing strokes is the reason for the anticoagulant, whatever their type.

I’ll update Monday after my ‘call back’ hopefully with a greater understanding of the situation.

👍

[jimlad2]

Brief response, though I'm sure others have said something similar: if you're still having AF episodes and you're 65 or over you should be on an anticoagulant, or aspirin at a minimum . . . because of the risk of stroke or HA. . . If you're under 65 then you should be on aspirin or possibly an anticoagulant . . .

[Cigarboxblues]

Update. AKA: the 7:30 pm call back 👍

So I got the call and was told that the Chadvasc score needs to be 2 (or more) to prompt the use of anticoagulants. My score is zero.

That said, I mentioned that I had last week had my iWatch warned me that my pulse was below 40 for 10 minutes (lowest 33) while resting watching the tv, that I’ve had (and did so whilst calling) harlequin/prism coloured c shaped eye problems for 3 of the last days (AKA retinal migraine) and lastly that my biweekly AFib event lasted 8 hrs last night until 5am this morning (whilst sleeping some of the time).

This, thankfully, did get the guy sketching down some details and after a bit of cogitation his suggestion went along the lines of a “pill in pocket” prospect for the future. But first to double check what my iWatch reported and my BP values today (100/70) which he said was low considering my age, an ECG and other verbal and diagnostic data should be collected for the heart consultant to review and to advise on a suitable plan.

So there we go.

I shall be poked and prodded a bit then I can update this in a more refined manner.

Sleep well everyone while I work the night shift and relax in the knowledge that something is finally being done. 👍