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Follow up appointment has left me more confused!!!!

Jans5 profile image
10 Replies

I've just been for my follow up appt and have seen yet another cardiologist. The 1st (in a&e) said I didn't have to take anything if the symptoms didn't bother me and I was at no more risk of stroke at this time so didn't need anticoagulant. The 2nd one said I had a slightly enlarged left atrium, gave me 100mg as a pill in pocket and referred to the Cha2ds2vasc score and said I didn't need anticoagulants yet. The 3rd said that I need to take anticoagulants as the cha2ds2vasc score is for people with permanent AF not for people with PAF as they are at higher risk of stroke. I've never heard or seen anywhere that states that and was wondering if anyone else had. He also said I was having to many episodes to be on a pip. Currently my episodes can be around 3 weeks apart for several months but then I have periods where I have none for a few months. This has not change between seeing these doctors so why such a difference? And how do you decide who to believe? The last one also said he thought my left atrium was normal. It has all left me very confused!!

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Jans5
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10 Replies

I'm not surprised you're confused. It's frustrating when you see different people everytime. Maybe speak to the department now and ask for your next appointment to be with a certain one. I have a similar amount of episodes (if not more) as you and I take PIPs and score 0 so I'm not on anti coagulations either.

Jans5 profile image
Jans5 in reply to

That's reassuring and having read as much as I can on the subject, seems right to me and what I was happy with.

Right first of all read around your queries to make informed decisions and ask informed questions. Read relevant parts on AF website look at latest NICE guidelines check your CHAD score . Also have you seen someone who specialises in the electrics of your heart?

Jans5 profile image
Jans5 in reply to

I had done that and taken in a sheet of questions I had spent time researching and put together. What threw me was him saying that the Cha2ds2vasc score wasn't for paroxysmal afib as the stroke risk was much higher than for permanent afib and that I should be on anticoagulants (I'm 58 with no other issues).

BobD profile image
BobDVolunteer in reply toJans5

Balderdash. It s for people with AF regardless of how often or not.

Jans5 profile image
Jans5 in reply toBobD

Thanks Bob. I'm going to try and see if I can get referred to an EP, don't trust anything the last cardiologist told me!

Jan

Finvola profile image
Finvola in reply toJans5

My cardiologist on diagnosing paroxysmal AF referred to my score being 2 and therefore he recommended Apixaban.

Never have read that PAF doesn't carry a stroke risk and that CHADS is not relevant.

in reply toJans5

Agree totally with Bob

Rellim296 profile image
Rellim296

Like you I have occasional episodes. They might be a month apart or longer or I might have one a couple of weeks after the last one. I have been taking flecainide as a PIP for the last two and a half years and that suits me fine. I'm frugal with it and only take it if I really need to. At my last appointment my EP suggested taking it daily and I wasn't keen and he was OK with that. However he wants to see me in only four months and my recent appointment was six months after the last one.

The thing is, if you take flecainide every day how do you know how much AF you would be getting if you weren't taking it?

The anticoagulant thing is very personal. As you have found, doctors don't all sing from the same bit of music and really to make an informed choice you need either a crystal ball or hindsight.

Jans5 profile image
Jans5

I had thought long and hard about what treatment I wanted and at this time I was happy with the PIP as were the first 2 cardiologists (the 1st one offered it if my symptoms were bothering me). My feeling on the anticoagulants at the moment is that the cha2ds2vasc and also Has-bled have presumably been put together by experts and reasonably up to date research so I'm reasonably happy at the point the benefits from anticoagulants outweigh the negatives is when I'll start taking it. There's no guarantees but I'm comfortable with that decision. I'm just going to ignore the last cardiologist because I know some of the information he gave me was inaccurate. Thanks.

Jan

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