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

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Endocarditis concerns

Bedlington14
Bedlington14

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.

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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:)

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.

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

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.

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

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.

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.

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.

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

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

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

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

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

That is fantastic news 😊

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

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.

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.

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.

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.

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

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 😀

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!

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.

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.

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.

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