Why Do Some GPs Pay Scant Regard to Home ECGs?

[L8Again]

My wife has been suffering from TLoC events for the past 5 years. Heart checks etc have revealed nothing and various GPs have fiddled around with her hypertension medicine. She has both an Apple Watch and a KardiaAlive ECG device. Both these devices have detected possible AF before and after the events but the print outs have been dismissed by successive GPs.

Following another TLoC event, she saw a new GP who dismissed the possibility outright that these events could have anything to do with her BP medication (1.25mg/day of Ramipril). We were quietly advised to seek out a private cardiologist.

Our chosen cardiologist said that she needed a 14 day holter monitor as he could see why the KardiaAlive was coming up with possible AF. This though would not be directly linked to TLoC. The monitor detected one asymptomatic AF event lasting 18 hours; 19850 beat pauses up to 2.9s and atrial runs. He is leaning towards bradyarrhythmia as one potential cause of the TLoC episodes but he now wants to fit an ILR.

We are pleased to be making some progress - albeit, at significant cost to ourselves. It is though sad that 6 months since a request was first made, the NHS has been unable to offer a 24 hour heart monitor. That said, our Cardiologist suggested this would have been a complete waste of NHS resources and time. It is sad that some GPs choose to ignore what technology might be telling them. My understanding is that the 14 day holter monitor file was initially assessed by AI in Australia.

[Blearyeyed]

I agree . Unfortunately, it is the luck of the drawer. It took me years to be diagnosed with my condition partly because it is less well known and most doctors , even specialists, didn't even know which results they should take note of in order to get them to take notice .

I ended up doing my own poor man's tilt tests at home and taking in the results , most doctors dismissed them because I might have had a normal ECG that day or they were all obsessed with my blood pressure.

It took videoing my test and then finally being seen by a doctor whom actually took notice of all of the results and listened to how the test needed to be done before I was given the Holter tests.

I made very detailed diaries and did two poor man's tilt tests per day at specific times , also taking my own cuff results on the other arm .

I still got a poor response from the third Cardiologist, only the fourth had a knowledge of mixed cardiac and autonomic heart issues and then sent the tests to a new Cardiophysiologist with experience in diagnosing these to get me a diagnosis.

My youngest daughter is going through the same problem as I did and to some extent , despite her knowledge of our family history and experience of what to do, she is still having problems getting taken seriously because if her age. Believe it not , the first Cardiologist used the words , " Young People like you don't get heart problems"

All I can suggest is just keep trying , get a second opinion if you need one , or more than one. Keep taking those test results and even be able to ask questions from your own research into your wife's condition , in a polite curious way because often you do have to cunningly guide them to the light switch before they have that "light bulb moment".

The Holter BP and ECG tests are definitely not a waste of time and resources, with some conditions it may be the only way to finally get to the truth so I would be inclined to ask again , certainly ask to see a new Cardiologist, and complain if you aren't being taken seriously. No body should get pushed to have a change in their treatment unless they feel confident about the advice they are being given.

I hope you and your wife get some good news soon , please keep us posted about her progress, take care, Bee

[Noodlesalad in reply to Blearyeyed]

Well said, brilliant reply.

[Noodlesalad]

My problem mild CAD and moderate LVH was picked up after a trainee GP recommended some blood tests and an ECG after I had been poorly with a strep throat infection. He contacted me after the ECG to say it was showing a long wave to the next best and referred me to a cardiologist, he was referring me as an urgent referral. Imagine my surprise when I contacted the hospital in question as they hadn't sent me an appointment after 3 months and then being told there was a 12 month wait as they were still dealing with the backlog from a certain virus.I decided a month later to use my fast dwindling savings to see a cardiologist privately. I was so glad I did he arranged for me to have a holter monitor for a month, a CT Scan of my heart and a ultrasound scan of my heart, hence my diagnosis. Luckily all those tests were done by the NHS as my savings would never have covered the total cost. It is disgraceful that many of us now have to resort to paying but it seems from what I hear an all to common occurrence nowadays. I am a waspi woman and have since I had to take ill health early retirement some years ago due to a chronic kidney condition constantly had to rely on my savings. As I have said before the NHS has been systematically destroyed by every government in the last twenty years and we have let them. It's very clear that the NHS as we know it is rapidly changing and not for the better.

[L8Again]

Things have moved on since my original post. My wife was fitted with a Loop Recorder just over a month ago. Overnight on Monday, she suffered 2 episodes of TLoC: just over 5 weeks since her previous episode. I made the decision to take her to the A&E at the hospital where the Loop Recorder was fitted. This is not an experience that I would wish on anyone ( that is not a criticism of the staff who were doing their best in extremely difficult circumstances).

Initial tests - bloods and an ECG revealed nothing - so I reminded the night staff that the hospital had access to Loop Recorder information. Nothing happened until the day team came in. Fortunately, a doctor was doing triage at the door to A&E so I had a quiet word with him. He called the pacing team and within minutes the nurse that inserted the Loop Recorder came dashing to A&E with a Medtronic base station. Loop Recorder data showed 3 distinct heart stoppages of c.6 to 10 seconds in the 4 hours from 9.45pm to 1.45am on Monday night/Tuesday morning.

My wife then went from being another patient in an A&E waiting room to a patient on complete bed rest with full cardiac monitoring. She is covered in stickers saying FALL RISK and she is not allowed out of bed without monitoring. Obviously, this change of status came as a complete shock to her.

A cardiac consultant has described the Loop Recorder tracings as showing unequivocal evidence that she needs a pacemaker. Hopefully, this will be fitted tomorrow. Having been assured that this doesn’t mean that she has a structural problem with her heart, and that the pacemaker will just step in when communication between the two chambers falters, she is now more relaxed. She is not bothered by the procedure: in this regard, having a Loop Recorder fitted has helped.

Hopefully, this will reassure others that it is worth pressing for answers. Understandably, when dealing with issues such as TLoC, GPs will apply the principle of Occam’s Razor: particularly, when ECGs and 24hr monitoring come back normal. My constant worry over the past 5 years has been that my wife might suffer one collapse too many. I slept well last night knowing that I might be able to sleep in the future without worrying whether my wife was still breathing.