Endocarditis concerns: I have leaky... - British Heart Fou...

British Heart Foundation

54,750 members34,267 posts

Endocarditis concerns

Bedlington14 profile image
25 Replies

I have leaky heart valves (Mitral and Tricuspid) and am very worried at the moment about Endocarditis. I haven’t got a temperature, but have had mild, cold-like symptoms on and off for a few weeks, with the occasional night sweat and occasional shivering. None of these are permanent, and I’ve been getting bouts of hot-then-cold for years, so I haven’t taken much notice, but the shivering is new. I’ve been sneezing, too, which might suggest it’s a cold. My question is, how bad do symptoms have to be before you should see your doctor? As for a heart murmur, I’ve had PVCs for years so irregular heart beats happen all the time (I take Flecainide and Verapamil for that) and I wouldn’t know how to distinguish them from a murmur. Any thoughts would be very welcome. Thanks.

Written by
Bedlington14 profile image
Bedlington14
To view profiles and participate in discussions please or .
Read more about...
25 Replies
Sunnie2day profile image
Sunnie2day

You write the shivering is a new symptom so it needs to be checked out by your GP as soon as possible - you could just have a cold or mild flu but the new symptom could be an indicator of something more and only your doctor can decide if it's serious or not. At the least you'll hear it's nothing to worry about but either way just talking to your doctor will ease the concern.

Update when you know something, please. Hopefully it's nothing:)

Bedlington14 profile image
Bedlington14 in reply toSunnie2day

Thank you. I’ve spoken to Doctor, and am having a blood test. The symptoms come and go, which is why the Doc wasn’t too concerned. Hopefully it’s just a minor infection. Hopefully! I’ll post again when the results of the blood test come through.

Sunnie2day profile image
Sunnie2day in reply toBedlington14

Fingers crossed it is something minor - looking forward to your update when the results come back!

Bedlington14 profile image
Bedlington14 in reply toSunnie2day

Just wanted to let you know my Endocarditis test was negative. Very relieved, although the test did show high potassium (5.5), so that’s a bit worrying. Thank you for your comments.

Sunnie2day profile image
Sunnie2day in reply toBedlington14

Thank-you for the update, and I hope the medics are now addressing your potassium levels.

P0rtnahapp1e profile image
P0rtnahapp1e

Anything which concerns you should be checked out, if only to put your mind at rest, but, as a lay person, I would have thought that the likelihood of you having contracted endocarditis if you’ve had the symptoms for weeks is very slim.

woodlandwonders profile image
woodlandwonders in reply toP0rtnahapp1e

Acute infective endocarditis develops suddenly and may become life threatening within days.

Subacute infective endocarditis or subacute bacterial endocarditis develops gradually. It may take a period of weeks to several months to evolve.

Bedlington14 profile image
Bedlington14 in reply towoodlandwonders

Thank you. It worries me a bit that the symptoms of the subacute form are often vague and easily mistaken for something else. Does that make it harder to treat, do you know? I’ve spoken to my Doctor. He doesn’t think it’s anything to worry about but has organised a blood test. I’m relieved something’s happening.

Bedlington14 profile image
Bedlington14 in reply toP0rtnahapp1e

Thanks for your reply. I’m hoping that’s the case. Been to Doctor, blood test on Monday.

woodlandwonders profile image
woodlandwonders in reply toBedlington14

It's great that your doctor is being proactive for the sake of a few cultures. Things that are slow brewing are often missed because the symptoms don't seem severe enough to suggest something so serious. You've done the right thing and so has your Doctor.

Take care

Bedlington14 profile image
Bedlington14 in reply towoodlandwonders

I’m lucky the Doc was a locum! The usual Doctors in my surgery aren’t so open 😟

woodlandwonders profile image
woodlandwonders in reply toBedlington14

You are!I always try and see a locum if I can for the same reason. Think its a budget protection thing 😉

Bedlington14 profile image
Bedlington14 in reply towoodlandwonders

Just wanted to let you know my endocarditis test was negative, although potassium was 5.5, but very relieved!

woodlandwonders profile image
woodlandwonders in reply toBedlington14

That is fantastic news 😊

Mary_Janet profile image
Mary_Janet

Hi

I have had endocarditis so have some idea what I am talking about, I had 10 days of flu l symptoms which I treated at myself at home until my family set me to the GP. My symptoms included night sweats and shivers. The shivering is usually a sign that your body is trying to fight infection and your temperature going up called rigors. The night sweats are most unpleasant and a sign you are not well. Please make an appointment to see your doctor urgently, tell the receptionist you have heart valve disease and your symptoms and you need to be seen. Hopefully you just flu but don't take the risk. Good health to you and hope all goes well.

Mary

Bedlington14 profile image
Bedlington14 in reply toMary_Janet

Thank you. It’s really helpful reading this. I’ve been to my Doctor and have a blood test booked for Monday. Can I ask, did you have the acute or subacute form of endocarditis? I’m glad you made a good recovery.

Mary_Janet profile image
Mary_Janet in reply toBedlington14

Glad that you have seen the doctor and that they took things seriously.

I had an acute endocarditis , unknown to me I had a bicuspid valve which was severely tarnished so I was a sitting target. The perfect storm was that I lost a filling and the bug entered my system that way. A long hospital stay which included valve replacement. A long recovery but all well and recovered eventually. Hope you are ok and have a good weekend.

Bedlington14 profile image
Bedlington14 in reply toMary_Janet

Thank you. As you’ve had endocarditis (acute), I was wondering if you know how long the subacute type can go on before it becomes too late to treat? My symptoms started about 3 weeks ago, by the time the blood test results come back, it will be more like 5 weeks. I can’t find the answer to this anywhere. Your thoughts would be appreciated.

Mary_Janet profile image
Mary_Janet in reply toBedlington14

Hi

I don't think you should get caught up with the labels of acute or sub acute endocarditis. If your tests show that you have endocarditis I think you will be sent to a cardiologist or physician straight way and treatment will be dependent on what the actual bug is causing the infection and what is treatment you specifically require. No doubt you would require other tests such as an ecg, more blood tests and an echocardiogram.

Hope that helps.

Best wishes. Mary.

Bedlington14 profile image
Bedlington14 in reply toMary_Janet

Ah I see. That makes things a lot clearer. Blood test tomorrow, I’ll keep you posted. Thank you.

P0rtnahapp1e profile image
P0rtnahapp1e

Mine was acute infective and went from sepsis to endocarditis within hours. Nine weeks on IV antibiotics and a few scares but I came through !

Glad you have been to GP. That in itself should make you feel better, even if it’s just psychological 😀

Sunnie2day profile image
Sunnie2day in reply toP0rtnahapp1e

Yikes, which is more scary, sepsis or endocarditis and here you are having had both! Nine weeks on a drip sounds like its own special hell. I was on one for two weeks once and every morning waking up to see that thing still attached was so depressing!

jackiesimmonds profile image
jackiesimmonds

I have had two lots of endocarditis.....my cardiologist said he found seriously raised "CRP" in the bloods, and immediately conducted the TOE ( "down the throat") exam which showed the endocarditis bugs clearly. first bout was 6 weeks of round the clock antibiotics which worked, went home, but then a year later it was back, a big enough colony to require a valve replacement, plus the 6 weeks antibiotics via intravenous drip. If your CRP is high, you would, I imagine, need to see a cardiologist. Ask the doc about this.

Bedlington14 profile image
Bedlington14 in reply tojackiesimmonds

Thanks for your reply. I’m still learning about endocarditis, I didn’t even know it was possible to have it twice, and I don’t know what CRP is. I’ll talk to my Doctor about it on Monday. Hopefully, if the blood test showed anything, he would have got in touch. Hopefully.

jackiesimmonds profile image
jackiesimmonds

A c-reactive protein test measures the level of c-reactive protein (CRP) in your blood. CRP is a protein made by your liver. It's sent into your bloodstream in response to inflammation. ... Normally, you have low levels of c-reactive protein in your blood. High levels may be sign of a serious infection or other disorder. Most full blood tests done will show a reading. If you have endocarditis the reading can be quite high - mine was about 80 - but low levels are good. After the antibiotics, I got down to about 8 and was then allowed home.

Not what you're looking for?

You may also like...

Endocarditis advice

HELP! Just a bit of a back story - when I was 5 (weeks old (1998) I had valve replacement surgery...
Laraa473 profile image

Risk of endocarditis reoccurring

I’m new to this forum and posting things so please bear with me. The last 6 months have been...
Anon2023 profile image

Heart Palpitations - Heart Murmur - Sinus tachycardia

Firstly - apologies - this is a long one. Hi I wonder if anyone can offer any advice please? Im a...
Lozcdoz profile image

Endocarditis Round 2

Hi Guys Ok, had my first valve replacement last July which was accompanied with my first case of...
Larson2023 profile image

10/10 for Peppa Pig

Today I saw my Cardiologist, it’s the 1st appointment I’ve had since my AVR 9 months ago. Well...
KazSumm profile image

Moderation team

See all
HUModerator profile image
HUModeratorAdministrator
Luke_BHF profile image
Luke_BHFPartner
Amy-BHF profile image
Amy-BHFPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.