Can anyone help me with what to say, and what tests to ask for, at my cardiology appointment?

[Friend66]

Hello. I have an appointment with a cardiologist next week, after months of worrying symptoms since March 2020. My GPs and also a cardiac nurse, have been dismissive from the very first time I experienced symptoms in March 2020. I have already had a CT scan, which was clear. I have had to ask for this cardiology appointment , so I want to make sure I have an idea of what tests I should ask for, and what I should say. Since March 2020 I have attended A&E a few times, but symptoms had subsided and tests showed nothing. A chest X-Ray and ECGs picked up nothing, and ambulatory monitors have fallen at times when no incidents have happened. I had a clear CT Cardiac Cor artery calcium scoring. My symptoms are sometimes in isolation and sometimes at the same time, most often mild, but sometimes worse and worrying. The worst incidents happen at night where I am woken up by symptoms, where many happen simultaneously. Symptoms are: chest pressure (mild, moderate and rare occasions when it is worse), chest pains (can be right side, left side, centre, under ribs), chest discomfort, awful dull ache or uncomfortable sensation across and inside chest, burning in centre of chest, heart flutters, heart palpitations, the feeling that my heart skips beats which makes me gasp, the feeling of random and isolated very hard thumps/beats, weakness in both arms and sometimes legs, occasional tingling and numbness in hands and feet/toes, occasional foot/hand pain, random stabbing pains and twinges in chest that come and go, occasional random arm pain (either arm) that comes and goes, occasional throat discomfort, chills, mild nausea, hot flushes of discomfort over chest area, fatigue, occasional strange sensation in jaw (full, thick feeling at the back), shooting pains right rib area, intermittent stabbing pains under ribs. Pains and aches can be dull and last most of the day and night, or they can be stabbing/shooting and come and go. The most common symptoms are the chest pressure/pains/discomfort, heart palpitations/flutters and limb weakness. I am a female age 34, BMI 35 and working on bringing it down. I jog a few times every fortnight, between 3-5k each time. I usually don't feel bad during exercise. However, occasionally my heart has felt a bit 'skippy' towards the end of exercise after about 30mins, and often for the rest of the day and the days after, the general symptoms of pressure, discomfort and palpitations worsen. I haven't knowingly had COVID, although I had a virus in December 2019, probably hand foot & mouth which was going around nursery. I experienced bad indigestion and reflux during two pregnancies, so I am positive that this problem is not related to GERD. The GP tried to say it was 'anxiety' and hyperventilation - I am 100% certain I am in no state of anxiety or panic, and I am fully aware of my own calm and measured breathing. Admittedly, the first few times I had symptoms, I did get worked up about it, but this is not the case now. However I am understandably very concerned about getting a diagnosis. Symptoms happen at all times, usually at rest or when I am doing happy family activities, there really is no stress. The GP also looked at my eye and concluded my arteries were not blocked, so it could be costochondritis, which I just know it is not. Another GP at the very start of the pandemic suggested over the phone that I might be imagining the chest problems, similar to when soldiers imagined a pain in their leg, except that their leg was not there as it had been amputated!! I have controlled hypothyroidism. I had gestational diabetes twice, but tests last year said my blood sugars were normal. I feel I have not received the care and tests that I should have by now, and I want to go to this appointment armed with the right things to ask and say. Any help and advice would be very much appreciated.

[Caitlyn6]

The cardiologist will decide on the right tests, based on ur symptoms so list them out succinctly and clearly and give it to the cardiologist so they can decide what tests.

[Friend66 in reply to Caitlyn6]

Thank you! I think I will write a clear list to make it easier.

[Poosage in reply to Caitlyn6]

Hi Friend66, Sorry to hear you are having such a rough time with it all. I had a heart attack in April 2019 totally out of the blue. 50 year old female , non smoker or drinker, not overweight and no family history. Just bad luck I was told. Since then I have experienced all of the symptoms you have and been to A&E many times. I have had so many tests and although I have some heart damage Greg have reassured me the symptoms I have are nothing to do with my heart. I have been told like you it’s Costochondritis but it’s been two years so finally spoke to a Rheumatologist who thinks it is a type of Fibromyalgia. I have been referred for physio and suggested I take Amytriptyline . I already take Tramadol daily for the pains. I am not saying it’s the same for you at all but maybe something else to think about . I wish you all the luck in getting to the bottom of it. X

[Friend66 in reply to Poosage]

Thank you very much for your reply, and I'm sorry you have suffered from these issues. This is all definitely food for thought, and hopefully it really is something non-cardiac. Best of luck with it all and thank you again.

[Hidden]

You’ve actually had all the initial cardiac tests designed to find the obvious problems: ecg, holter monitor, x-ray, bloods. The only thing I don’t see you mention is an echo (ultrasound), but you have had a CT and the calcium score. I’m not remotely medically qualified, but I’ve got to be honest and say quite a few of your symptoms don’t jump out at me as being obviously cardiac, and I think Caitlyn6 is right in saying that the best approach may well be to lay out a chronological account of your symptoms to date, and see what they think and suggest. As the symptoms don’t seem to be tied to exercise, an exercise tolerance test may not be much help, but that would be the other ‘standard’ test often undertaken in the early stages of diagnosing something. Holters aren’t always brilliant if episodes are infrequent and short lived, and the issue with diagnosing arrhythmias is often catching them ‘in the act’ as a result, but you can have monitors on for as much as a month, rather than just a couple of days or a week. The only other way round catching infrequent episodes is something like an implantable loop recorder, but my understanding is that they’re not offered that often, because there has to be a high clinical index of suspicion that there definitely is something cardiac going on for consultants to feel there’s a need.

[Friend66 in reply to Hidden]

Thank you very much for your reply, this is really helpful! I think it is the 'not knowing' that is so terrifying. Yes I will write a clear list of all symptoms and take it from there. I didn't realise the monitors could be had for more than a couple of days, so perhaps that would be something to ask about. Thank you again and all the best.

[Qualipop in reply to Friend66]

I totally know the frustration of trying to get a diagnosis. Mine wasn't initially heart but spinal and it took me 10 years before I found a new pain consultant, walked in, said " I have a dreadful pain just here- it spreads across my abdomen and down my legs" and he instantly said "You have Maigne syndrome" which is what I'd been telling the docs for years. They'd never heard of it so dismissed it as anxiety. If it had been diagnosed 10 years earlier I wouldn't now be in a wheelchair. So yes, push and push for a proper diagnosis. You certainly can have a holter monitor for a week ormore. When I suffered almost constant palpitations, nothing caught it, it was so random, until I had a stress test ( The treadmill). Even then it showed nothing until I sat down to recover with the electrodes still attached and had a massive run of palpitations. Make your list. Try to keep it concise and ask what he recommends.

[Friend66 in reply to Qualipop]

Thank you for this, I'm sorry to hear about your health troubles. Yes I will definitely push for a diagnosis, and perhaps ask about stress tests and a longer holter. I think keeping it concise is a good idea, I doubt there will be much time in the consultation! Thank you again and all the best.

[Qualipop in reply to Friend66]

Good luck.

[Chime62]

Sorry you're going through all of this. I know how frustrating it can be. I've been there myself.If you haven't already had these done, I'd request an EP study, blood work (check troponin levels), echo cardiogram or maybe stress echo or just plain stress test, heart mri and a king of hearts monitor. If they all come back normal at least you know it's most likely nothing seriously heart related. The skipped beats are probably pvc's or pac's.

I hope someone can get to the bottom of this real soon. I know from experience how this can take over you're life. Good Luck!

[Friend66 in reply to Chime62]

Hi there, thank you very much for this, I'll look up all these things so I know roughly what I'm talking about! It's the uncertainty which takes over. Thanks again and all the best.

[Chime62 in reply to Friend66]

I know what you mean. Sounds crazy but, I hate when I go to the doctor with a problem and he tells me he can't find anything wrong. Oh great! So now what? I sit around not knowing if sitting around is making it worse or better. It's a vicious cycle. Everything will work out for you. Just hang in there. One day at a time. Good luck!

[Golfgal1969]

Hi,

I fell ill in August 2018, underwent the usual EGC, echo, Holter, etc. tests and was totally dismissed by the NHS. Fortunately I had private health insurance and a CT scan showed I had an almost totally occluded LAD. So, stent fitted but feeling unwell again within a month - long story short several medics were dismissive, repeatedly telling me my symptoms "didn't fit" and I was told the usual tests that they did tests were 85% accurate. I pointed out that the usual tests had not shown issues previously and if the tests were 85% effective then this meant they were 15% ineffective/ inaccurate

A perfusion scan in July 2019 showed another blockage at D1 and another stent was fitted in August 2019.

I started getting symptoms again in June 20120 and was referred straight for the perfusion scan as it seems I am a bit of an anomaly and the usual tests tend not to show any issues. The perfusion scan showed the stent in the LAD was failing and I needed bypass surgery (which I had in December 2020).

So, my advice, if you are not showing adverse results from the usual results, is to ask for a perfusion scan. It may be that your symptoms are not cardiac related but a perfusion scan should help you cardiologist decide one way or another.

Best of luck.

[Friend66 in reply to Golfgal1969]

Hello, thank you for this, that is very useful. I have not heard of a perfusion scan before. Sorry to hear about your health troubles and all the best.

[folkieboater]

Feel so sorry for you. I’m on that same road. Many of the same symptoms. Cough for years, chest pain, sore throat, palpitations, sweats, fatigue. HRT (I’m 52) has calmed the hot flushes and the palpitations a bit. Used to be able to run an hour without a walk break 3-4 years ago, ran/walked a marathon in 2019, now struggle with 2 minute/1 minute intervals.

Been told Costrochonditis by a nurse in 2018, go away and take paracetamol by A&E in 2019 and tried every inhaler and steroid as, “it’s probably Asthma or bronchitis, but we can’t do tests due to covid” (they were booked for last March 🤦🏼‍♀️) All chest X-rays and ECGs have been OK, but the last of them was 2 years ago.

Despite my mum and grandma both having heart attacks at 57 and passing away and all three of her brothers having had heart problems in their 40s, that’s never been suggested.

I have a new GP, so might suggest.

[Friend66]

So sorry to hear this, it's really hard! I hope you get this resolved...keep pushing the health professionals.