Mitral Valve Regurgitation

[Stacey85]

Hi everyone,

I'm new to the group and looking for some advice. This is a long one so bear with me.

I've been suffering with really bad health issues for a few years now. I'm a keen cyclist/runner. That all came to a halt when I started getting really bad chest pains, nausea, dry cough etc.

GP sent me for an echocardiogram back in 2017, nothing came of it apart from being fobbed off with 'exercise induced asthma' a year down the line (2018) I stopped using the inhaler because it wasn't working.

2019 I was diagnosed with mild endometriosis. They removed the endo in March 2019. They have referred me to the endo specialists to keep an eye on that.

Last year I had to stop cycling because it felt like my lungs were going on fire, causing me to be in extreme pain and cough tasted like metal. I was also suffering with chronic nausea, fatigue, brain fog, breathlessness.

Over the past few months my issues have been getting even worse! My chest issues are getting worse. Dull ache all the time especially right sided chest pains, dull achey back, indigestion all the time, grinding my teeth in the night, aching jaw, I can hear my blood pressure in my ear, I can't cycle any more and I can't do any cardio.

I'm 35 and live a very healthy lifestyle so this shouldn't be happening.

Only yesterday I stumbled across the letter from the echocardiogram that I got in 2017 and I noticed it says I have mild mitral valve regurgitation and so does the pulmonary valve and the tricuspid valve.

Is this something that can get worse? That was picked up in 2017, so nearly 4 years ago. I have no idea what to do. If it's my heart then all my symptoms are really quite bad now.

Any advice would be much appreciated,

Stacey

[Paperlover]

I think the regurgitation can get worse. After I had sepsis 13 years ago, I was told I had a slight heart murmur. This is very common and quite a few people have it from birth and never know about it. I didn’t think any more about it until I went to the GP a couple of years ago about feeling dizzy. She listened to my heart and said it was very noisy (typical click). I had an echo at my local hospital who said it was a mild problem as my valve was a bit floppy. My GP however referred me to a cardiologist. I chose a different hospital as the waiting list was shorter and as they were on a different computer system they asked for another echo. Their view was a mitral valve prolapse with severe regurgitation. I’ve now had the valve repaired so if I were you I’d ask for a referral to a cardiologist. You should have a review every 6 months or annually depending on how bad it is.

[Stacey85 in reply to Paperlover]

Well it's been 4 years since I had the echo so probably best they have a look to see whats going on x

[Midgeymoo17]

Regurgitation can get worse with time. However, 4 years would be a fairly quick timescale for it- I was diagnosed with mild pulmonary valve regurgitation in 2004- it reached severe in 2013 and reached need for replacement in 2017. The tricuspid it is very normal for it to have a mild leak and seeing this on an echo would be considered normal. Also it is usual for these valves to cause any symptoms

The mitral valve, however, is on the left side of the heart. This can cause more symptoms and if you are worried something is changing- you should visit your GP. They will be able to do a stethoscope check- and when it comes severity of valve regurgitation these are surprisingly accurate despite their simplicity. If the stehescope check suggests something or your GP is concerned they can order an echo directly and take it from there.

In terms of follow up- I have to disagree with Paperlover about how often you could expect a leaking valve to be followed up. My experience is that pre-replacement I was seen between 1/year and 1/1.5 years. Post valve replcaement my longest follow up is my current one. It was supposed to be two years but because of COVID is going to be 3 years with no echocardiogram. I have never been under 12 months. I know for a certain valve problem called bicuspid aortic valve- the standard follow up at my hospital is between 1 every two years and once every five years. So I think the review time period suggested by Paperlover might actually be a bit short but it certainly should be monitored if it has changed.

[JJL15]

Hi there Stacey,

I would def ring the number on that letter which I’m assuming came from the cardiologist. Ask them for a follow up as you haven’t had one since, and you are getting those symptoms. I’m 36 and had my Aortic valve replaced at 28 and now weeks away from my next one but I had to follow up myself with an echo in October and had mine jan 4th and told right away I needed urgent surgery. I don’t want to scare you but if you think there’s something wrong, always go with your gut feeling. I have severe aortic stenosis but I don’t really have symptoms just the odd short of breath And noticed I can hear my heart sounding louder like it’s working harder when I’m in bed. Go with your gut feeling and get them to see you. Good luck and let us know how you get on. I don’t want to worry you but always best to get things checked out even if it’s just to put your mind at ease.

Fi

[Stacey85 in reply to JJL15]

That appointment was done in London, I moved to Scotland in 2019. I will need to start the whole process again up here. Just frustrating referrals won't be quick thanks to COVID so god knows when I'll get to see someone.

I have something similar when I'm in bed trying to get to sleep I can hear my blood pressure in my ear, it's so strange.

Why did you find out you needed urgent surgery? x

[080311 in reply to Stacey85]

Hi Stacey

When you say blood pressure in your ears do you mean your heart beating? After my surgery (Aortic valve replaced and bypass) I could hear my heart beating, thought it was something to do with the op! Told it was a form of tinnitus. very common! Drove me nuts especially at night when the house was quiet. Sometimes now it sounds like hob nailed boots marching over cobblestones! Thankfully it’s not very often now.

I too live in Scotland and the care I have received for my heart issues as been amazing.

Hope you to can get the care you need, and get your problems sorted.

Pauline

[Stacey85 in reply to 080311]

Yes heart beat, I wasn't sure how to say it. I can also really feel my chest working over time after changing the bed, making the bed, walking up stairs etc.

Doesn't seem right for a 35 year old xx

[080311 in reply to Stacey85]

Certainly doesn’t, get an appointment with your GP, you need a new battery of tests done ECG echocardiogram, for someone as young as you it’s a very scary place to have found yourself in. You will get this sorted out, but you have to keep knocking on the door telling them your symptoms.

Take good care.

Pauline

[JJL15 in reply to Stacey85]

Oh no! Def go back to your docs. That’s frustrating for you. Fingers crossed they will refer you ASAP x

[Sunnie2day in reply to Stacey85]

Welcome to the Hearties side of HealthUnlocked - not a group a young 30something lass ever expected to be joining but you'll find us a welcoming lot

I retired home late 2010 to Scotland after working my entire career in the US and had to start all over as my records from the US weren't taken seriously by the first GP surgery I registered with. 2nd time lucky - new GP surgery in early 2019 and I've been very well cared for since.

Coming to Scotland from any different UK home nation can also mean some difficulty getting records transferred and recognised, and the process can feel absolutely 'starting all over' - but it is SO worth the effort!

We have really superb heart health care here (bit of a postcode lottery but what isn't, especially with the pandemic) and your GP should be referring you to the nearest Rapid Access Chest Pain unit as soon as possible for assessment once you let her/him know of your symptoms and how debilitating those are becoming.

Please update us as you go along.

[Stacey85]

I'll speak to my GP tomorrow. Thanks x

[Expostie]

Hi Stacey i too got fobbed of with exercise induced asthma i very soon found out that i needed AVR.I also had some of the symptoms you say metallic taste in my mouth and i also thought i was fit as i was still playing 5-aside football when i was 60 but thankfully because i was, i knew something was not right keep pushing your GP to see a consultant good luck.

[Stacey85 in reply to Expostie]

Oh my god!!! So similar. I have such a bad cough now, it wakes me up in the night. Almost every day my chest hurts.

When you were diagnosed with exercise induced asthma how soon did you find out you needed AVR?

[Expostie in reply to Stacey85]

Hi please dont panic thats the last thing i want you to do your echo should have picked up on any closing of any of your valves mine was probably gradual as i was slowly getting out of breath even at work delivering the post but i just took it i was getting a bit older but when i went for my echo i was given some good advice regardless of your age if you are getting short of breath its for a reason.I caught mine in time i got diagnosed in the April and had surgery in the October 2016 but only because i was lucky enough to have the money to go private for my echo and angiogram and consultant fees.

As for regurgitation there is prob, thousands of people walking about with this and there are totally unaware of it my last echo showed this up on my mitral valve but was told not to worry about it but if you can afford it i would advise anyone to go private for an echo source it on the net its not as costly as people would think but it gives you peace of mind.

[kingsnorth]

Hi Stacey l was diagnosed with mild regurgitation in 2015 and wasn’t offered follow up or any meds as it was mild. It has been getting more frequent recently and sometimes painful. I went back to gp who requested an ultrasound and ecg which showed that the regurgitation has got slightly worse. I’m waiting for a telephone consultation with a cardiologist on the 2nd March. I’m having a 24 hour monitor fitted next week. Go back to your gp and ask for a referral in the meantime perhaps gp can order some tests.

[Everyoung]

Hi I had mild moderate regurgitation which was caused by prolapse of the mitral valve. It became moderate after 5 years and remained that way for approx another 10 years and does give me symptoms but the doctors don’t do anything till it’s severe. They use a watch and wait approach even though it had has caused my heart to enlarge. They do offer beta blockers to help with symptoms and regular echocardiograms . They say a lot of people manage to live with leaks and only intervene when it’s severe. I am 56 and do think that wouldn’t it be better to repair in young age rather when I get older and do further heart damage. You need to see a specialist.

[Stacey85 in reply to Everyoung]

I watched some youtube webinars on it, as usual the doctors are all American. Seems like they would rather operate sooner rather than later. Even before symptoms start.

When symptoms start it seems like that means there's damage being done.

I really hope if something is wrong they will do something because I'm 35 and shuffle about like an 85 year old, thats no way for a 35 year old to be living.

back in my 20's I had hopes of going to the olympics with my cycling but I can't cycle anymore. All I can do is walk and some home exercises.

xx

[Everyoung in reply to Stacey85]

Thanks for that, I would be quite happy to travel to America for treatment as sometimes I feel that the consultants just ignore my symptoms and expect me to get on with it. I do try and have to ignore when I feel dizzy and endless palpitations with tachycardia. Which webinars did you watch.

[Stacey85 in reply to Everyoung]

If you go on Youtube and type in Mitral Valve regurgitation they all some up. But I guess in America it's all private health care so you can be seen quick etc. The UK is totally different with the NHS. It just doesn't make sense to me to make people wait if they have daily symptoms and it can be fixed, its crazy!!!

[Stacey85]

Hi everyone,

Thanks for all your comments.

I have just spoken to my GP, he said it's definitely not good I'm getting these symptoms especially since I have already been diagnosed with mild mitral valve regurgitation.

He is speak to the cardiologists this afternoon and wants me to be seen today or tomorrow.

He is very concerned because of me being young and healthy.

[080311 in reply to Stacey85]

Great work, you have done the right thing. Try not to use Dr Google unless it’s the nhs website, operating sooner rather than later in the States comes down to money! Do you have health insurance, it’s not a case of how sick you are it’s a case of can you pay! Not when the procedure needs doing. I have a nephew in Ohio who is a surgeon!!Hope you get some answers.