Not bad enough? LVSD

[Gobbins]

After months of palpitations, mild breathlessness, some lightheadedness, fatigue, aches and brain fog I went to GP about a year ago. ECG found ectopic beats but was told you can have 1000s of these each day and are normal. Fast forward and I've now been diagnosed as having Ehlers Danlos and as part of that an echocardiogram was completed. This showed LVSD with EF 46%. The rheumatologist requested my GP refer to cardiology to explore. I'm in my early 50s and female.

Recently saw cardiologist with a repeat ECG which showed a low p wave. My smart watch shows several episodes of AFib most days especially when exerting myself (gentle walking/ standing- nothing strenuous). Cardiologist seemed very dismissive of symptoms and test results stating smart watches are useless and it would say AFib as I have a low p wave, ectopic beats even when they wake you up during the night are normal- he knows patients who have 10,000 every day and my EF and LVSD don't mean anything (completed at a different hospital so he didn't have full report- just the summary of LVSD and EF46% provided by GP). He seemed agitated I had been referred to my local hospital from larger regional one. Not sure if he was having a bad day or he's just more used to seeing much more severe patients. I want to be proactive and improve things. I show many symptoms such as breathlessness, swollen calves, feet and ankles, pressure feeling in chest, lightheaded ( momentary and usually when standing/ walking) all at a mild to moderate level but they are persistent every day.

Part of me is happy to think I'm fine and to ignore my symptoms but part of me worries that the doctor was too dismissive. However, he did say he'd arrange an MRI and suggest that my GP could try beta blockers to manage the ectopic beats but these would cause fatigue. Both of these felt begrudged as in his view I don't have heart failure nor AFib. The MRI is being done as when I was in my early 30s I was diagnosed with Lupus following complications in pregnancy and although in remission since then, it can leave cardiac scar tissue.

I'm keen to have a record of the AFib which in the quick 12 led ECGs completed at clinic neither captured within those few seconds, so have arranged to have a 7 day holter from Heart Tec which will generate a report.

Can anyone offer any advice? Although a sacrifice, I could see someone private if people think a second opinion could be a sensible decision. I don't want to be a burden on NHS or come across as having unfounded health anxiety but likewise I don't want to look back in 5 years time and wish I had have been more persistent in finding ways to prevent any potential issues escalating.

[Heartstopper]

I too have LVSD with <35EF which the cardiologist said was classed as severe. As from today I’m now on the 4th pillar of HF following my check up with Heart Nurse yesterday. The nurse did point out that I’d been lucky in that I was referred quickly for diagnosis following seeing GP with breathlessness, fatigue and lightheadedness. She said delay can result in hospitalization and increase difficulty in getting symptoms under control. With this in mind it might be in your best interest to either go privately or push for a second opinion. I really don’t think that taking responsibility for your health is misuse of the NHS.

I hope you get the correct care asap, good luck

[Callie456]

Hi, I'm sorry to hear of your experience, which seems most unsatisfactory to me. You have significant symptoms, reduced EF below normal and other medical problems as well. It's good you're having holter monitor and an MRI. It's crazy to leave people without treatment until they get worse. Early diagnosis and proactive treatment are important for you to reduce or manage the underlying cardiac problems and your symptoms.

I hope that you get all the appropriate tests, results and treatment soon.

[honeybubs]

Go Private. My symptoms went on for years. Even the private cardiologist I saw looked at my NHS notes on line and said ‘you are healthy there’s nothing wrong!’ I’m slim 65 years old with low blood pressure. I knew things had changed so said ‘I know my own body so please do an echocardiogram’ with going private he couldn’t refuse. I went back on my own for the results as my husband had an important meeting. The Cardiologist couldn’t look me in the eye! He was looking down not at me and gave me the news my EF was 35 and I had heart failure! This had been going on for over 15 years but didn’t show up on tests or I didn’t have symptoms when seeing a cardiologist and with it being Dilated Cardiomyopathy my veins and arteries were clear! I’m all for preventative measures and acting quickly before things get worse so don’t give up. You know your own body so keep on at them and don’t be sent home with them telling you you’ve got anxiety! You will have anxiety because no one believes you! But in my opinion only I don’t think it’s the cause. Good luck hope you get some answers soon. X