Ask for a heart catheter test.
That'll tell you everything about your heart condition

I know just what you mean about doctors telling you the same thing without actually listening to you. I had the same problem until I took matters into my own hands and went private.

Last week I had a bank of blood tests, another CT Scan and then a right heart catheterisation.

Finally I have been referred to a specialist team at Sheffield Hallam Hospital. When my local doctor kept telling me that everything wsd fine it looks like my PE has left me with Chronic Thrombotic Pulmonary Hypertension. Al potentially life threatening condition.

I've experienced it myself and I've seen it so many times here, a lot of doctors somehow fail to see past the first diagnosis and once Warfarin has been prescribed they just lose interest.

Stand and fight for yourself if you don't feel you are being listened to and seek a second opinion if you are not happy.

Debs X

Exactly what debs has said,
I myself live in Brighton and had to go see pulmonary hypertension specialists at the royal free hospital in London.
Had large PE both sides of lung last June and admitted.
Now 7 months on I still get out of breath walking up slopes or more than twenty steps.
I've had echo cardiograms since and although it only showed minimal heart strain they referred me to the royal free for heart catheter test.
This is what showed the hypertension.
Now been referred to Papworth hospital for the pulmonary thromboendarterectomy (PTE) surgery.
Should be around April.
Totally scared about it but it just shows, if you're still getting berthing problems or heart problems, it's more than likely you will be suffering with pulmonary hypertension

There are many causes for an irregular heart rate, and they range from everything from heart attacks and coronary heart disease to stress to dehydration so maybe it's from the PE, but you'd want to see if there are other causes as well. I mean, you can also be a perfectly healthy person with a healthy heart and get an irregular heart beat at times. I've had irregular heart beats caused by being anemic.

Here's a good reference for preparing for an appt:
http://www.mayoclinic.com/health/heart-arrhythmias/DS00290/DSECTION=preparing-for-your-appointment

I think until you know what may be the cause, it's hard to know if you need to see other specialists. I don't think a heart cath is always the right test for every situation. I'd just start with working with this cardiologist, telling him your history, whether your irregular heart rate is intermittent or all the time, if it happens more with exertion, etc. The tests he orders may depend on that information.

Personally I disagree that you should jump right in there and insist on a heart catheterization. This is an invasive procedure, it's better to start with things which are non invasive such as an echocardiogram and stress test. Those tests do tell the doctors a whole lot of information and it's a starting point. Which is exactly what you have to do, just start somewhere. Try not to go in to your appointment assuming your doctor won't do enough or won't really care. I know that's a really easy attitude to have, especially when many of,us were overlooked getting a PE diagnosis. But I have found through my extensive journey into the world of dealing with doctors that many are genuinely interested in our well being or at least their interested in our case in an academic way. You do need to advocate for yourself and not be afraid to speak up and ask questions, but try to think of your doctor as your partner rather than your enemy.

I would also not jump to the conclusion that something terrible,is wrong with your heart because of an irregular beat; like already mentioned, there can be many temporary causes of something like that which are benign, even stress or anxiety can mess up an EKG. If you just had your PE in September, you are still very early in the recovery process, even though it doesn't seem like it. Many survivors of PE show heart damage up to about six months after the event, but the heart essentially heals itself. That's not to say that some other situations aren't possible, which is exactly why you're being referred to a cardiologist, to make sure you haven't had one of the less common side effects, even if it's not probable.

Getting back to the talk about the idea of a catheter....if the doctor thinks you need one, he'll say so, but I don't think you should expect him to jump immediately to that. The procedures are generally safe, but remember that there is always some risk when we go threading catheters through our circulatory system. I had to have a heart cath this summer (after working with my doctors for years regarding my heart health post PE). It was done as more of a "let's be sure we're not overlooking something" kind of test. Well, in the end that test told,the doctors absolutely nothing new, and I lost an entire artery in my arm to boot, because guess what? It caused me another blood clot although I began anticoagulation again the same day as the test was administered. Now I have a bad arm to deal with, and it was for a test which didn't tell us anything new. Everything we needed to know about my heart was told on the EKGs, stress test, and heart echo. I'm not saying you shouldn't do that test if a doctor thinks you need it, I just don't think you need to go in with a preconceived idea that you must have it.

Some of the things I personally would think are more important questions is ask for advice in what you can do to support your heart health, are there changes you should make in your life or diet, like should you stop drinking caffeine, or what kind of exercise should,you be doing? What limits do they put on you for exercise, is there a maximum heart rate you should allow? What symptoms should you look for and how should you react if you get them? Are the irregularities seemingly more connected to the PE or to anxiety (if it's anxiety, what treatment does he recommend?) or is it maybe something else entirely?

Anyway, those are some of the things which come to my mind, based on my own quite lengthy process of seeing cardiologists and just about every other -ologist anyone can think of. I wish you well on the appointment and hope that you are able to learn something useful to you.

Great points, Shilosmommy.

If he doesn't recommend a heart cath right off the bat, I wouldn't just assume he's dismissing you or not taking your issue seriously. He's assessing you and will make a determination based on his assessment. I know it's easy to feel like docs ignore our symptoms or don't take us seriously. I think most of us have experienced that to some degree, but not all docs are dorks. I've had my share of them, but I had a very caring, concerned cardiologist. I had heart damage from my PE that he diagnosed and I never had a heart cath.

Also, there may be different testing protocols in the UK than in the US so consider that when people comment as that can explain why there may be differences in treatment and approach among members.

I feel for all of you that not only have gone through a PE, but are now dealing with possible heart issues. Its so much to process and the fear and anxiety for the future can be daunting. I am also going through that fear and anxiety for possible heart issues. My cardiologist was going to call me last week, but went out of town, so now another weekend of waiting to talk and discuss. I have had to learn patience through this whole process. But I thank God for calming me when I start to fear the worst. He has helped me greatly through this event in my life.

I would agree with RMB and ShilosMommy that I wouldn't go in and insist on any particular test. He's the expert, so let him ask his questions and make suggestions. You could even ask about a heart catheter test--IF he doesn't recommend it--and see what his reasons are for not suggesting it.

I developed orthostatic hypotension about three months after my PEs, where my heart wasn't compensating for gravity and so my blood pressure would plummet when I went from sitting to standing or when I got more active. I went through a ton of tests, saw both a cardiologist and a pulmonologist and we never did figure out a solid cause for the OH. Even though I didn't do a heart catheter test, I feel pretty confident from the tests that we did do that there was nothing wrong with it. I wound up just making some minor adjustments to my diet and adding a supplement and I was fine. So, yeah, just because something involves your heart, it doesn't necessarily mean a crises or something major.

My advice for you would be the same as I give to everyone before seeing a specialist. Write down your questions and list them in order of most important to least important. Consider taking a friend or relative to the appointment; sometimes someone else will think to ask a question that won't occur to you until two weeks later. Another person can also help you process everything and will remember things that you might not remember when you're feeling deluged with information.

Hope it goes well!

Toss I have been having OH too...so maybe it is part of the healing...
My doc appt is a self referral to a cardiologist I saw a number of years ago...I am not going with an "agenda" but with a list of questions as you all said. I copied your questions Shilosmom to add to mine.
I totally agree to start with non invasive tests since I would have to go off the xarelto to have it done . Lots to think about and talk to doc about.
Thanks so much everyone!!

Doctor today gave me meds for irregular heart rate. He said invasive tests were not wise with the PE so recently. I will see him again in 4 months and I hope all works out well until then.

I hope the meds will work well for you and that the doctor addressed all your concerns. Were you,given a beta blocker? My HR tended to be all over the place and would often be far too fast - like I'd do no more,than walk across the room and suddenly it was pounding away at about 120. Since I started beta blockers I don't have trouble with that at all now, I have a nice steady HR.

shilosmommy the doc gave me this:
Verapamil is used alone or together with other medicines to treat heart rhythm problems.
Verapamil is a calcium channel blocker. It works by affecting the movement of calcium into the cells of the heart and blood vessels. As a result, verapamil relaxes blood vessels and increases the supply of blood and oxygen to the heart while reducing its workload .

I have a calcium channel blocker as well and it has worked absolute wonders for me. I hope it will do the same for you. I did feel quite lightheaded the first week or so starting it, since it tends to lower our blood pressure. But my BP regulated itself after my body got used to the medicine.

Thanks ShilosMommy that is really good to know. I was a little light headed last night and that was the first dose so I will keep that in mind.
I am more encouraged now.