Concerned

[Deb1838]

Hi all I have been lurking recently trying not to be a nuisance.

Went to hospital today for results of 72 hour ecg, saw the cardiologist who said I had not had a heart attack despite my gp saying I had. As I am in Nsr at the moment he said I just need to continue with bisopolol and rampiril but stop Rivaroxaban. I was surprised at this as I had been told I was on it for life.

He admitted that it will happen again but the beta blocker should help to prevent this.

I know I am a stress head but I am now worried that if I go af again I don’t have the protection of an anticoagulant.

Your opinions would be gratefully received.

Many thanks in advance Newbie Deb

[BobD Volunteer]

You need to go to AF Association website and do you CHADSVASC score to see if you need anticoagulation or google CHADS2VASC2 and work it out. Remember that you may not discount any score so for example high blood pressure counts even if you are on medication for it.

Most of us who are at risk prefer life anticoagulation yes even with a score of 1.

[Deb1838 in reply to BobD]

Thank you bob this is my concern as I am female, hypertension and diabetic. I don’t understand why he is stopping anticoagulant.

[Hidden in reply to Deb1838]

Was your cardio aware of your diabetes? With a score of 2 and arguably 3 for being a woman, AC is usually advised. Perhaps ask your GP how the Cardio justified stopping AC in his letter, or ask GP to ring the consultant.

Or discuss restarting AC pending second opinion, with an EP, maybe by the private route for the opinion only, tests are costly if privately funded.

A Kardia device might help to confirm recurrence of AF, something again to discuss with your GP. The Medtronic linq looks very promising in situations comparable to yours, if AC is not restarted.

[Deb1838 in reply to Hidden]

Thank you for your response oyster. He was very aware of my diabetes because I asked about the affect it could have on AF. Stupidly I didn’t question him on his decision I was quite flustered. I think I will make an appointment with my gp for a week or so when they will have a report back and see what his reason for this is. If not I will go the private route. Thank you

[BobD Volunteer in reply to Deb1838]

Neither do I. Fight your corner!

[wilsond in reply to Deb1838]

Deb!please query this.I was assured by my gP that I was only a chad 1 but was actually a 2 because of hypertension,even tho medicated.I eventually had a tIA ..mini stroke...I saw my new cardiologist as a new patient yesterday(6 months post TIA) and to be honest he was horrified that I had not been anticoagulated prior to the tia,said "You were very lucky it wasnt a full stroke,especially with your strong family history)

There are many,Bob for one,and definetly me now who believe anyone with AF woukd benefit from anticoagulants.

I am considering a formal complaint because the cholesterol consultant had written to my GP 6 weeks before i had the tia,advising anticoagulation,which he persuaded me was unecessary.

Think itis well worth checking this out

[Deb1838 in reply to wilsond]

Thank you Wilsond I am definitely going to question this as the anticoagulant gave me a level of confidence which has left me now feeling vulnerable 😩

[wilsond in reply to Deb1838]

Let us know how you get on!

[meadfoot]

Check it out Deb a second opinion would be valuable, best wishes.

[Deb1838 in reply to meadfoot]

Thank you meadfoot

[doodle68]

Hi Deb here you are, I find this AFA stroke risk calculator easier to follow than some. Press the purple 'Calculate' button when you reach the end for an instant result...

preventaf-strokecrisis.org/...

You can also press 'print' to print a report to take to your GP .

[Deb1838 in reply to doodle68]

Thank you doodle that link was very useful. I will print this and take it to gp. I have quite a stock of Rivaroxaban so will keep taking it till I have a reason for stopping

[Hidden in reply to Deb1838]

Also, point them in the general direction of the NICE guidance for AF if you are in the UK

[CDreamer in reply to Deb1838]

Good advice above - it’s sometimes hard to stand up to doctors because you assume there is a level of competence but I have learned that I need to question everything and explore for myself.

[Deb1838 in reply to CDreamer]

Thank you very good advice

[Polski]

I don't understand what may be happening here. 'Cardiologist said I had not had a heart attack, but GP said I had'. Is the cardiologist more concerned about possible bleeding, than about stroke from a blood clot (and why?)

Or did he say the wrong thing - actually meaning you to stop one of the other drugs? He should send your doctor a letter with details, or you could phone his secretary, and ask her to confirm with him . . .

(I wonder how the diabetes plays into all this?)

[Deb1838 in reply to Polski]

Sorry Polska I had stated in a previous post that after having an ecg at Doctors that she stated I had had a heart attack. But according to cardiologist I have not. No he definitely said I was to continue with bisopolol and rampiril as they would help prevent further Af events. Yes I will wait to see if his report gives any enlightenment

[Meeko]

I have a score of one but insisted on anti coagulant. My family has a history of stoke and heat problems. I pointed out to my resistant gp that a clot going from the heart hits the brain stem. Whereas a clot from your leg hits your lung first. She changed her mind and authorised rivaroxaban.

[Deb1838 in reply to Meeko]

Thank you meeko I will go forearmed with information

[BobD Volunteer]

There is still huge resistance to anticoagulation by many GPs here in UK . I recall a talk given by an expert on A/c where he stated that if a GP had one patient who had a GI bleed then he was far less likely to prescribe A/c in the next six months , but one patient with an AF related stroke had no effect on the doctor' s attitude.

AF Association has been pushing for years to change this situation but in the mean time we all need to fight own own corners. My solution would be to put in writing to the doctor that you want his reasons in writing so that when or if you have a stroke you or your family can sue him . That usually focusses the mind.

[Deb1838 in reply to BobD]

Thank you Bob I like that, I think I might try that!!

[kjjan]

My cardiologist has taken me of rivaroxoban because my risk of bleed and stroke balance each other out even though my CHAD score is 2 this is because I have had a brain haemorrhage 15 years ago. I live near you do you go to Maidstone hospital???

[Deb1838 in reply to kjjan]

Hi Johan no I go to Medway maritime do you have an EP at Maidstone we don’t have one at Medway. I still don’t know the reason I am waiting for the report to come, hoping this might explain.

[kjjan in reply to Deb1838]

There is an ep at Maidstone and he is good.