Trust your doctors, but also don't hesitate to double check them if you feel you should

[ChasMartin]

When my previous EP had suggested flecainide, I was hesitant immediately. Primarily because I did not feel listened to, as though he was just applying the broad brush to me when he needed to be more careful. Then I did some research on it, and I felt I confirmed I should be hesitant, so I refused flecainide, twice.

Fast forward a year or so, when I asked my new EP if I should try flecainide just this past week, he told me absolutely not.

His notes from the mychart website:

Assessment

1. PAF. Very rapid rates but burden overall low. Based on history, appears to be primarily vagally triggered. Could try low dose sotalol but would also address vagal triggers incl GI, possible OSA. Given low burden, would be hesitant to pursue ablation unless noninvasive options truly ineffective.

2. Atrial flutter? Some regularity to RR intervals and given very rapid VR, suspect some periodic organization to flutter potentially with 1:1 conduction. Would avoid Ic AAD.

3. Stroke prophylaxis. C2V 0. No OAC indicated at present.

4. Atrial tachycardia. Brief, nonsustained.

5. Wide complex tachycardia. Suspect may be aberrated AT given monitor strips showing spontaneous narrowing without change in CL.

In bold is exactly the reason I thought I should avoid flecainide, due to my heart already seeming to occasionally go into 1:1 conduction even without it. I even had it written down to talk to my new EP about should they suggest flecainide, but I didn't even get to. There's always some hesitation around questioning the experts, but in this case I was right, flecainide is potentially dangerous considering my condition.

I haven't always been right, of course. There are extremes, where we can always question or never question. I think we should land somewhere in the middle, with measured caution, especially with some of these drugs that have potential for promoting life threatening arrhythmias.

Even sotalol, which he put me on, has that potential, but he chose to prescribe it while listening and carefully considering my condition. So far I am doing very well on it with no signs of danger (no QT prolongation).

[mjames1]

Absolutely! Glad you did your homework. Even the best doctors can get it wrong sometimes.

Jim

[Hidden]

No way would I trust my GP as employed by the UK NHS! NO WAY !!!

Why, the stupid person doesn't listen to me. I am better off having a deep and meaningful with my Surgery Pharmacist !

John

[wilsond in reply to Hidden]

Im sure Id be better off with our vet!

[Hidden in reply to wilsond]

Rest assured ........... looking at the treatment our cats have recieved .... its worth considering 😂😂😂😂

[pusillanimous in reply to wilsond]

Vets are amazing. look at the variety of species and ailments they deal with. The are GPs, Specialists, Surgeons and Pharmacists all rolled into one. They have all the equipment you need for an operating theatre and more importantly, they are compassionate !

[Hidden in reply to pusillanimous]

.....so that's it then ! we've decided then, vets are go ....thunderbirds are go ! 😂😂😂😸😸😸😸😸

[Paulbounce]

Good post Chas.

They don't always get it right.

"There are extremes, where we can always question or never question. I think we should land somewhere in the middle, with measured caution"

They don't like it when you question them. I mentioned it here before - I fairly recently saw a GP. He asked what the problem was and I told him the condition I had. Serious, he looked at me and said 'well how do you know that?' I explained the symptoms and he looked it up on his computer and said it sounds like it is what you say it is. Take Ibuprofen for the pain he announces. I said I can't take Ibuprofen because I have afib. With a puzzled look on his face, he starts typing away on his computer again. Oh no, you mustn't take Ibuprofen he announces.

I've had a few near misses worse than that. With that in mind, I would like to amend your pasted quote above.

"There are extremes, where we can >>>>>always question<<<<< or never question. I think we should land somewhere in the middle, with measured caution"

Paul

[secondtry in reply to Paulbounce]

Agree you must not be gaslighted or excluded from the medical team.

[tomtom222 in reply to Paulbounce]

I experienced this and similar things over and over again...

[CDreamer]

Excellent post - I think I would have been dead by now if I hadn’t persisted and questioned and queried rational for treatment recommendations.

We need to have trust in our doctors but my criteria for trust =

Do I believe what they are telling me?

Can I rely on them to have my back in an emergency?

Will they explain their rational for making their treatment recommendations and clearly explain the pros and cons?

Will my preferences be taken into consideration and will I be included in any decision making process?

Thankfully gone are the days of Doctor Knows Best and blindly following whatever Doctor said to do.

Unfortunately we are often the experts on our condition - many of the doctors and nurses and paramedics have acknowledged that I probably know more about my condition than they do, sometimes that’s not that hard and that has been my experience in both AF and my neurological condition - which to be fair is quite rare. I know little or nothing however about the other 60,000 listed ailments which doctors are trained in.

I have always taken the view that doctors are the experts on medical knowledge, or should be if well trained but I am the expert on me and therefore a therapeutic relationship is far more than knowledge, it’s also about caring and empathy and taking time to develop a relationship. Some gifted doctors can establish that relationship very quickly whilst others will probably never understand how important it is.

[secondtry]

Very useful post Chas. My experience with AF, GP was unhelpful, first cardio and EP didn't help, second cardio did put me on a low dose of Flecainide, which didn't work so suggested ablation, I suggested trying a medium dose of Flecainide first and 9 years down the road on that prescription all has been well.

[KMRobbo]

To be fair to GPs: when I was initially diagnosed with AFib and the hospital cardiologist chucked me a bisoprolol which knocked me out, then sent me home later the same day, which subsequently every pill I took did the same when I took it, the young ish GP at the time took me straight off it, and prescribed alternatives after I explained what was happening, She also wrote to the Cardiologist advising of the issue. Sadly she moved practice, (and also this was pre covid). However I think there are still GPs with sense but there are not enough of them, and they have no time, which I think has been caused by the current / recent Government policies, as with the rest of the NHS.

[Singwell]

Thanks for sharing. Wise words! May all continue well with you.

[Autumn_Leaves]

At my most recent appointment where my diagnosis of AF was confirmed, I was not offered anything in the way of treatment. Like you, I have a low AF burden. I was told my score for AC therapy was 0 although I thought that being female meant that I would have a score of 1. Ablation wasn’t mentioned and flecanide was offered on a “you could try it if you want” basis, but there was no overt recommendation that I take it. So it was very much a case of “watchful waiting”. They will organise a repeat echo later this year and review my situation after that. So, it’s not always a case of having drugs pushed on you, but the treatment has to be proportionate to the degree of severity, symptom burden, etc. Some people might be more critical of this approach because they don’t see it as adequate care or regard it as “doing nothing” or “dismissive”. Patient expectations can be highly variable too.

[CDreamer in reply to Autumn_Leaves]

You make good points about patient expectations but I would also point out that Flecainide is normally only prescribed in secondary care unless the GP has cardiac experience and qualification and the recommendation always used to be that first dose be taken under medical supervision.

[Autumn_Leaves in reply to CDreamer]

Yes, this appointment was at the hospital and taking Flecanide under supervision and having ECGs etc was explained, but it was very much left up to me to decide rather than the doctor making any kind of strong recommendation. I’d have to come into the hospital to go through all the relevant steps.

[Hidden in reply to Autumn_Leaves]

The new NHS mantra is ........... all care and no responsibility.

[Autumn_Leaves in reply to Hidden]

I don’t think the standard of care is so bad once you’re in the system, but cardiology appointments are now like gold dust because of the backlog and increasing levels of demand. I do have follow up appointments and they will organise a repeat echo, so it’s not like they have discharged me or anything like that. However, there is a greater need to be proactive in our own care and management. I would say most of us here are more inclined to be active participants in our own healthcare compared with many people. Many of us have some sort of recording device and we are probably all doing “something” to help ourselves, in terms of lifestyle and self help. I don’t think there’s really any two ways about it, we have to look after ourselves and do our bit as best as we can because ultimately it’s our own bodies and own lives. But we are also entitled to good medical care when we need it.

[CDreamer in reply to Autumn_Leaves]

It is a bit of a postcode lottery and also dependant upon the GP and how proactive they are. We (meaning husband and his GP) still chasing the results of an echocardiogram which my husband had done at our local hospital via cardiology referral from area hospital but it seems to have been swallowed by the big black hole which seems to be located somewhere within Admin and computer systems - which don’t seem to talk to each other 🤷‍♀️

[Autumn_Leaves in reply to CDreamer]

Yes, very much so. Some people are in a better location and receive a better service. Some areas are truly awful too. I hope your husband’s echo report surfaces sometime soon.

[CDreamer in reply to Autumn_Leaves]

The GP has written several times, my husband rung cardiology and the physiologists and no-one seems to be able to find it.

[Autumn_Leaves in reply to CDreamer]

That’s disgraceful.

[pusillanimous in reply to CDreamer]

Could you explain how this having to wait for the echocardiogram results works. because I don't quite understand (I'm obviously a bit thick) - but I go to my Cardiologist and his assistant takes me to a room and attaches me to leads. Reading from the invoice the following takes place: Cardio examination, 2 dimension. Cardio examination plus Doppler, Electrocardiogram without effort. I then go to his room and he goes through the results - Should I ask to be referred to a radiologist for the echocardiogram you speak of? The same applies when I have my Dexa scan, after the scan I sit in the waiting room for ten minutes and the written report is brought to me. I live in South Africa - should I be asking for additional tests? (my Cardio is Edinburgh qualified, so I imagine he follows the same or similar guidelines to his K counterparts)

[CDreamer in reply to pusillanimous]

Lucky you - NHS has so many departments and QUANGOS which never ‘speak’ to each other.

GP + local hospital situated in Lewes - but about 1.4 miles distance from each other - hospital Dept of Clinical Measurements - Physiologists is where the echo was performed at the request of a cardiologist whom we have never met and cannot even find the name of who works from (we think) Brighton (15 miles away) - where we go for Pacemaker clinic checks.

If we could get a local cardiologist to see as a private patient your scenario is exactly what would happen - alas not in the NHS.

[Hidden in reply to Autumn_Leaves]

Yes, Autumn_Leaves ... I guess you are right. What I find very irksome is how at my age (78) I am treated as a bloody grumpy, miserable old man by healthcare professionals. Like as if I'm stupid or 'why the hell are you here' you should be at home with your feet up watching daytime TV. For goodness sake, do you want me to end up in permananent health care ........... day time TV. Mind bending stuff. Its like this is what is expected of 78 year olds. Like I shouldn't be driving 15 ton double decker buses around with up to 109 young adult students onboard to and from college. Like how dare you shatter the mould.

Then these snotty grotty healthcare professionals wonder why I give them a severe tongue lashing.

Thank goodness I am genetically predisposed to AF and food is my problem/vagal nerve .......... as I have discovered this has enabled me to do exactly as you describe.

John

[dunestar]

Interesting that your EP comes right out with it and and concludes your Afib "appears to be primarily vagally triggered". This is in contrast to another thread (sorry have no idea who was the poster) where there was a conclusion EPs and probably general cardiologists are most likely to pooh pooh the idea of triggers whether vagal or other. Good to see.

[ChasMartin in reply to dunestar]

My experiences prior to this were such, and yes many more people on here as well. My previous EP did not believe you could do anything about triggers and simply had to only treat the arrhythmia. Granted, my new EP did not offer any specific advice re: GI other than to keep at it. Which is expected, that’s not his area. It is definitely nice to be validated.

Clearly the purpose will be to put off ablation, I intend to discuss the idea we hear as of late that “sooner is better” at my follow up appointment in February. I want to hear his thoughts on that. I would say I’m content atm to put it off, so long as the new medication holds up. The advances that could be accomplished in the interim before I have an ablation could be invaluable.