Mitral valve regurgitation

[NightOwl8]

Hello. I've always had a heart murmur, from birth, I was to take beta blockers when I was younger but stop around age 20. The murmur is due to mild mitral valve regurgitation. I have never had any routine follow ups etc. Only ever when I've had worsened symptoms. This was maining during pregnancy and since.

Is this something that usually gets checked on and off?

I'm fed up really as I've always struggled with fatigue and palpitations, with it worsening in recent years. They never go beyond an echocardiogram and 24hr monitor. I can and often do go 24hr without major palpitations. Some days it feels like my heart is losing the plot, feels all over the place but typically not when I have a monitor.

Maybe it's all purely down to the mitral valve regurgitation but I do worry something is being missed/I'm being dismissed.

I'm still hoping I get a chance to speak to the cardiologist eventually and discuss the echo but I'm not certain I will.

[10gingercats]

if you think you need a check up for your mitral valve then ask for it. Nobody these days will offer it to you as the nhs is so overloaded.We all have to be proavtive and ask for what we think we need.

[NightOwl8 in reply to 10gingercats]

I do but meet resistance from the GP. I am a healthcare professional within the NHS so am all too aware of the situation it's in, doesn't make it right for people to have to argue for what should be done as standard.That's why I'm interested to hear whether others do have routine check ups, if its something that should be happening or not. I go when I'm concerned about my change in symptoms but unsure if it should be checked every so often (3-5 years or something) even if there's no change in symptoms. To catch any change before more damage is done.

[Shoefairy in reply to 10gingercats]

Hi 2020 I was found to have several valves with regurgitation and was told regular echos were needed It is now 2023 and have never been called so after a trip to docs told him I want one I’m still waiting but at least I’m on the waiting list now I think you have to take your health now in your own hands after all we’re just a number Iv since been told I have AF now and that valve problems can bring this on All the best and hope you can get yourself sorted out quickly

[NightOwl8 in reply to Shoefairy]

I think because it's something I had from birth, it's never really been discussed with me as an adult. It gets mentioned in passing and that's all so I've never been given proper information about about it. The previous times I have had investigations, they've only discussed heart rate and rhythm without any real link to the regurgitation. If I know it should be checked on ever so often then I can sort it. I just want sure if that was generally the case.

Thank you 😊

[mczz in reply to NightOwl8]

Hi, I have the same as you ,also from birth with no treatment until I had a bad palpitations episode and ended up in hospital in Singapore while on flight stop over. After reassuring tests put it down to stress overload causing palpitations. Since then (16 years ago) I have been on bisoprolol and it has helped in calming palpitations and anxiety But the past few years have be getting on an off symptoms of feeling like my body doesn't know how to breathe , like laboured breathing. But oxygen levels etc are fine so I know that's ok. I was referred to cardiologist who put me through ecg holter,stress test,echocardiogram, and now am on a Valve clinic list which check every couple years or if symptoms worsen. So I think you need to speak to doctor/ cardiac investigations and say its making to anxious , maybe you need the beta blockers again ,but yes I think you have to push a bit more and call cardiac investigations to see if they can suggest anything, sometimes you have to try different routes and dare I say exagerate symptoms so you get the ball rolling, then things fall into place. Goodluck and sorry for long post . ¹

[NightOwl8 in reply to mczz]

Sorry for the delay in replying, I've had a family member in hospital then have follow up appointments, it's been hectic.

Thanks for sharing your experience, it's really interesting. I will definitely push more, I think I just needed to see how others are seen to feel a bit less silly going back.

I'm good for fighting for things for others but lack confidence a abit when doing so for myself.

Thanks again

[mczz in reply to NightOwl8]

That's ok, hope your family member is ok. I'm same ,lots of advice and help for others but sometimes put myself last. Goodluck with sorting your appointments .

[Dancer57]

Hi.

I was diagnised with mild to moderation mitral valve regurgitation in January this year. I was being investigated for heart palpitations and an Echo showed my leaky valve which was a shock!! I have to say I had the Echo done privately and my heart palpitations were actually due to my Thyroid Disease.

However, I was originally told I should have an Echo once a year to keep an eye on the leaky valve but when I got the hospital appointment that changed to a 2 yearly check up. So my next one is Jan 2025. There was mention about every 5 years as it can take a long while before it gets worse, if it is going to get worse. So sounds like they won't do anything without significant symptoms. Fortunately at the moment I don't have any symptoms.

I do get Ectopics and had them for years but hospital not bothered about that either. Must admit I would sooner have an Echo once a year just to keep a check on it as some people have no symptoms but have severe regurgitation.

If I was you I would contact your GP again or if you can afford it go private for an Echo to put your mind at rest. I was discharged back to my GP which I was not too happy about.

Good luck.

[NightOwl8 in reply to Dancer57]

Thank you for sharing your experience, sorry its hasn't been very positive for you.

More communication within the NHS is definitely needed so there's less confusion for the patients I think. Hopefully with it being on your records now it'll mean it'll be easier for you to go back. I agree, would be more reassuring to have them each year. Especially since you're mild/moderate, makes sense for higher surveillance really and not having to start from the beginning each time would be better for all.

It's helpful to hear that there should be some follow ups though, I was so unsure whether it was something I should push for and didn't want to go on for something that isn't usually what happens.

Thanks again

[Dancer57]

Hi. Yes I understand it should be monitored but it all depends on the period for monitoring i.e yearly, every 2 years etc. Depends I think on how bad it is and if you have symptoms. If everything is steady and no symptoms then the longer until the next check. Some regurgitation remains the same for years before it gets worse or as I was told it may never change. All a bit of wait and see.

That is how my NHS Trust go about things other Trusts and doctors might be different.

See what your GP says.