Mild aortic stenosis...is this normal? - Hughes Syndrome A...

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Mild aortic stenosis...is this normal?

Charts profile image
12 Replies

A heart mumur was picked up when I was at the a&e back in June. Had an echocardiogram done September. Finally after trying to chase the a&e cardiologist who checked the echocardiogram he said my results were all normal. So I requested my results to check for myself as I feel rotten daily and it's says mild aortic stenosis/probably due to small lvot. Then a few different other parts of heart saying regurgitation. Does this sound normal to you? Should I maybe follow this upI know aps can cause heart problems as well, so don't know if this mild aortic stenosis is common with aps

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Charts
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lupus-support1 profile image
lupus-support1Administrator

What I would do is to ask your GP to refer you to see a cardiologist at one of the teaching hospitals. A teaching hospital will always have the best doctors.

Whether this is APS related, or not, see the specialist cardiologist, who will run a battery of tests and relieve your mind.

You deserve to know what is going on with your body!

With good wishes,

Ros

Charts profile image
Charts in reply to lupus-support1

Thanks RosYes I will see the gp. I was just thinking the gp might think I'm being a hypochondriac because I was told my results were all normal. But that don't sound normal to me

HollyHeski profile image
HollyHeskiAdministrator in reply to Charts

I was having issues for many years and felt I was being treated as a hypercondriac!Then a brilliant cardiologist did his own tests and found a brui on both sides of my sub clavian arteries- all mysteries solved!

Whether it's normal for APS I don't know but listen to your body and follow through until you get your answers.

Who cares what they think, you know something is wrong, try and find out, sometimes not knowing is worse. x

Charts profile image
Charts in reply to HollyHeski

Yes I need a second opinion. I've trusted what I was told in the past about something else and I'm paying for it now

lupus-support1 profile image
lupus-support1Administrator in reply to Charts

You aren’t a hypochondriac!

Pickzie profile image
Pickzie

hi. I have lupus and APS . Following investigations for palpitations, my echocardiogram showed mild aortic regurgitation. The conclusion was that the regurgitation was too small to be causing any symptoms and no treatment was required. My blood pressure, heart rate and rhythm were all normal and it turned out that my palpitations were simply down to stress. My GP did recognise that lupus and APS can cause cardiac problems so he arranged a repeat echocardiogram 3 years later, to check that nothing had changed, which it hadn’t. This reassured me that all is well and the very small aortic regurgitation isn’t a concern. It’s worth you speaking with your GP to discuss the results of your recent tests and let him know your worries. I know the situation can be frightening and getting reassurance that something isn’t being overlooked is important. I hope, that like me, all is well for you. Best wishes

Charts profile image
Charts in reply to Pickzie

That's reassuring after 3 yrs everything was ok! I think I will definitely speak to a doctor just so I know whether I should follow this up. Thank you!!

Ageingfemale profile image
Ageingfemale

hiya, it’s so frustrating when you see a result that says mild aortic stenosis and they say it’s normal!!

I was diagnosed with mild mitral valve stenosis about 2010 and had a balloon valvuplasty(put a balloon in through groin and inflated it in the valve to widen it. I was told it would last between 5-10 years. A simple procedure that was carried out with just a local anaesthetic and a couple of hours later I was home. This was pre APS diagnosis and the experts said I’d had rheumatic fever as a child but I didn’t! My mum said at the time that no way did I have rheumatic fever! The valvuplasty lasted 6 months and eventually it was decided I had to have the valve replaced. So 2014 I went in for open heart surgery and a metal valve was inserted. Apparently the op was a complete success, the only problem encountered was that they couldn’t wake me afterwards. 🤦‍♀️. I was in a coma for another month before I came around. It was only after I started to have TIA’s and saw a Stroke consultant he mentioned APS and so started the tests etc and trips to Guys hospital in London (I live in Warwickshire) that the dots were joined up and eventually concluded I have APS and the coma was highly likely to have been catastrophic APS. My aortic valve is now deteriorating and has gone from mild to moderate regurgitation. They still just check it yearly and this year the cardiologist said it’ll probably need replacing eventually but nowadays the operation is done via keyhole surgery!! So no broken bones anymore. Neither are metal valves used anymore either. It is so scary to have heart problems, and it seems to be down to APS. Do see your gp and hopefully he will get you reviewed by a cardiologist annually. Don’t hesitate to message me if you are unsure of anything.

Charts profile image
Charts in reply to Ageingfemale

Wow sounds like you've been through a lot! Problem with me I've also pots syndrome and it's very scary because I wouldn't know what's causing any of my symptoms as heart problems symptoms and pots symptoms are so similar. It was only by chance the mumur got picked up. Before I was diagnosed with pots 3 yrs ago I thought something was wrong with heart so paid private for an echocardiogram, all was well back then with my heart and now I have the new one to compare it. So I'm going to book to see that cardiologist from 3 yrs ago and take the new results to see what he thinks. Good thing is this cardiologist was prepared to take me on nhs at the time to do a test for suspected pots and true to his word he arranged it for me and then we went into lockdown. I definitely want an opinion from another cardiologist. Scary to be so young (40 yrs old) and feel like I don't function properly anymore!! Are there any tablets you can take for mild aortic stenosis do you know? Thanks for taking the time to reply.

MaryF profile image
MaryFAdministrator

I agree with lupus-support1 and HollyHeski you do need a specialist and a clear explanation. My daughter had a similar diagnosis, she had a hole in her heart that closed as she grew older, but also has a mild stenosis and also had a heart murmur. She is much better now. MaryF

Charts profile image
Charts in reply to MaryF

Yes definitely will be seeing another cardiologist for an opinion

KellyInTexas profile image
KellyInTexasAdministrator in reply to MaryF

❤️

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