Leaky heart valve

[Fi1982]

Went to A&E yesterday with some strange symptoms that I thought were mostly anxiety related. I wasn’t suffering chest pain as such but the doctor pressed down hard on my chest and I felt some discomfort, plus I had raised D Dimer in my bloods (1700), so they followed it up with a CT scan to check for possible blood clots.

The doctor came back all breezy and said all good, no clots, the only thing they found was a slight leak in one of my heart valves, detected by some of the contrast dye leaking back out of my heart during the scan. Just needs an eye kept on it, toodle-pip and Godspeed

I was in shock, but managed to get a few questions out about how this would be monitored and would I need surgery in the future. She seemed quite surprised by my level of concern and batted away the idea of surgery as something extremely unlikely. I pointed out that she has just told me I had heart problems, hence my worry, and she kind of apologised for being so cavalier and tried to answer my questions a bit more earnestly. She said my GP would make a decision based on the CT, either no action required or further monitoring perhaps.

Has anyone else got any experience of this (the leaky valve, not the laissez-faire doc!). I’ve got terrible health anxiety and am spiralling between being stoical and sensible and sobbing my head off in terror.

TIA

My dad had a leaky heart valve for many years, they monitored it for a long time and then eventually he had valve replacement surgery in his mid 60s and is doing well.

If it helps, I was born with a mildly leaking heart valve and it hasn't needed any meds or surgery yet, and I'm plodding towards 50

As with all things, it depends which valve and it depends how much it's leaking. Also some people tolerate it better and feel little impact, and some have symptoms.

Could you ask your GP if there's a cardiac nurse specialist you could talk to? They are usually brilliant at providing information in ways you can process, and helping you navigate the system if you need any further tests or treatment.

Some doctors really have all the people skills that would suit them to a career in research (sigh) so I'm sorry you had a shock. I hope your GP is helpful.

It very much depends on which valve and the severity of the leak.

I have a mitral valve prolapse acquired when I had the flu four years ago, which went from mild to severe fairly quickly. My condition was such that I wouldn’t have survived a valve replacement so last year I had a mitraclip fitted which is a new intervention which has taken my leak back from severe to mild. Due to my heart condition the entire valve cannot be closed so I will always have an element of leakage in the valve.

But I agree with above it would be best to speak to a nurse practitioner who will be able to advise you a bit better. There are numerous valves in the heart so it really will depend which one.

Also, if you’re having symptoms then it may well need to be something they watch more closely.

Wow, such fast replies - thanks a million.

The only real symptom I’m getting is light-headedness, which has been going on for weeks. I also suffered a bad bout of this in 2015 and was diagnosed with Labyrinthitis, and have had v intermittent slight episodes since. Now wondering if I’ve had a leaky valve all this time ☹️. How bad a symptom is a light head? Am I ok to wait for a GP appointment as long as symptoms don’t get worse?

You need to talk it through with your GP, but light-headedness is not a symptom I have ever been told to look out in relation to a leaky valve personally (but please consult a professional as I'm only speaking from individual experience).

I'm wary of listing symptoms that would be related, as you say you suffer from health anxiety and I'm not sure it would help you. However, if you want further reputable information, I would look on the British Heart Foundation website and check out their downloadable patient information guides.

In the meantime, it makes sense to live a heart-healthy life (plenty of fibre, fruit, veg; reduce fatty and salty foods; take gentle exercise like walking) so you know you're doing everything to positively protect your health.

Thanks a lot for your reply @MutteringDarkly, it’s great to hear from someone with experience of this, I’m feeling a bit at a loss today with the incomplete info I’ve been given.

I did google symptoms 🤦‍♀️ I know I shouldn’t have but it was inevitable really. Apparently light-headedness is a symptom of severe leaking, but the doctor said it was a slight leak only and that it was no cause for concern. I doubt she would’ve got it so wrong from looking directly at the scan and I’m trying very hard to cling to that... I’m assuming I’d know if I had severe leaking?! My blood pressure was fine, as was my snapshot ECG, and I don’t have severe lethargy or chest pains. Perhaps the light head is an ongoing symptom of my lifelong battle with anxiety and depression 😕

I’m going to call my GP first thing tomorrow and request an Echocardiogram and to be put in touch with a cardiac nurse. Lord knows when any of that will happen but getting the ball rolling will make me feel a bit better I hope!

All my valves are leaking according to echocardiogram
Diagnosed about 10 years ago, but there's been no change on subsequent echos , the cardiologist is not concerned . I have no symptoms. I've been told not to worry about it.

My dm found out on an echo a few years ago she had a minor leaky valve probably from birth. Wouldn't have known other wise. Had the echo as standard blood pressure check. For a time she had to take am antibiotic before dentistry but she's never had an issues with her heart and is 84.

*an antibiotic

I used to have tachycardia when I was younger, I could feel my heart going crazy and I'd go breathless and lightheaded. It never got picked up on scans as it was completely random and would generally disappear in a couple of minutes, so ECGs etc were useless.
Anyway fast forward 20 years and I was pregnant with DS, and although my tachycardia had disappeared for years, I felt it start to come back with dizzy spells etc. They scanned me just to double check. The consultant told me I had a leaky valve, but not to worry, it's more common than you realise, and the pregnancy hormone, relaxin, relaxes not only the pelvic muscles but all the muscles, including the heart.
I also have hypermobility (double jointed) and that means everything is looser than the average person, so that plays a part too.
He told me to book a FU appt to monitor it in about 10 years, so that's how bothered he was!!

I'd be more interested in why your d dimer is 1700 and why they have let you go without investigating it. Your GP may not have the letter from the hospital yet so ask if that's in before you speak otherwise it will be a wasted call for you both. Leaky valves can be from several reasons some very benign as others have commented.

Sound very frustrating and concerning for you but I would concentrate on the ddimer before the valve.

Thanks very much for all your replies, I really appreciate it 🙂

Interesting to hear from people with similar diagnoses, I’m so hopeful that mine is a minor leak that remains that way! I’ve found it very hard to move on from the shock of the initial diagnosis, but posting here and on the MH forum has really helped. Plus I had a good appointment with the nurse practitioner today, she said all my obs were excellent and she couldn’t even hear a murmur, so again that’s very hopeful and has calmed me down a bit.

@Musicaltheatremum this is the second time my d dimer has been found to be raised, I’ve asked several doctors about it and had scans in my legs and chest for clots. I’ve been told that although it is higher than the norm, it’s not extremely high and therefore probably indicative of general inflammation in the body (so minor viruses, I also have a chronic foot problem and sciatica), rather than anything sinister. Apparently the d dimer cut-off for clot concern is very low so no clots are missed. One doctor even said maybe that’s just where my d dimer sits?! It’s been very bad for my health anxiety but having had five different doctors tell me not to worry, I guess I need to take them at their word 😕 If you’re a health professional please do let me know though, I’m always interested in a sixth opinion 😁

Ohh me! 🙋🏼‍♀️ I’m 37, was diagnosed with first degree heart block 10 years ago (just means my heart beats a tad slower) so was given an echo and they said I had a mildly leaky mitral valve with slight prolapse, whoop. They scan it once a year but it’s not changed since diagnosis and they are confident it’ll just stay as is probably forever.
One of my cardios once told me thousands of people are walking round with mildly leaky valves they are super common and although they monitor them they’re no biggy I’m sure you’ll be fine

I do however hate my heartblock as that’s a minor issue with electrical conduction in my heart (totally unrelated to leaky valve) and I have major health anxiety so when like right now I’m getting constant palpitations I freak out.

Valve though ... honestly if it’s mild you’ll be fine and they rarely cause symptoms unless things get worse x which they most likely won’t x

Light headedness and collapse absolutely can be cause by a leaking valve. Did they say which one is affected? It will need to be monitored, if the leak is mild they will probably watch and wait, if it is severe and you are symptomatic (sounds like you are) they may want to do more tests and refer you to a surgeon. I would also have many questions after being told I had a heart problem!

I got diagnosed with mild leaking aortic heart valve. I have symptoms such has dizziness when sat down. Wake up out of breath and breathlessness when walking around and up the stairs. The GP didn’t say anything about it just said to have another eco in 3 years. Me and my partner was going to try for a baby but I’m a bit worried now with that I’ve been reading (on Google) did you have any problems with it during pregnancy.