myocarditis diagnosis

[Theange66]

Hi all,

I was admitted to hospital in March 24, with a suspected heart attack. After an emergency angioplasty and high Triponin levels of 3000, I was released after a week. Since then, I e seen the inherited cardio team, they were testing for AMC, results came back negative. Infectious diseases dept, results came back negative. Although I have raised eosinophils. 72 Holter monitor, which didn’t pick up anything, ecg which was normal. A repeat MRI in Sept 24, which did show inflammation around the LV which has gone down, but cardiologist would have thought would have gone completely. Had a phone call last week from him, they still don’t know what’s going on. Repeat bloods, again eosinophils are raised but not as bad as last time but high ferritin levels of over 300. All the rest of CFC are normal, I do suffer with high blood pressure and an underactive thyroid. I am of a healthy weight and I’m no nearer forward in finding out a diagnosis. I’m still waiting for him to review my repeat bloods, he did say about re referral me back to the infectious disease dept. The last resort would be a heart biopsy which is scaring me. Has anyone else been through this? I’m on 1 aspirin a day and 1.25 Bioprosol. Not knowing is really worrying me.

[Theange66]

just to be clear I was diagnosed leaving hospital and still have a diagnosis of Myocarditis. However the cause is still unknown.

[Bahamasgirl]

What is your Troponin level now? In my experience there’s not much expertise in myocarditis. Takes ages to get the right help. There’s a great book explaining all about the heart and story of someone who has myocarditis that I have read. Very helpful. Author is kayte alexander I think. Only available on her website though. Might help you. Wishing you well.

[Theange66 in reply to Bahamasgirl]

Hello and thank you for taking the time to message.

My troponin level is 7 @ Jan 25. Upon hospital admission it was 2800 @ March 24 and 19 @ July 24.

Oh will definitely take a look at that book, really appreciate the recommendation.

They only seem to want to monitor me, for now as considered asymptomatic and cardiac stable.

Thank you

[Bahamasgirl in reply to Theange66]

Your Troponin level is excellent. Well done! Hopefully it will stay that way. My best wishes to you.

[Theange66 in reply to Bahamasgirl]

Thank you.

All inflammation markers are generally normal, except ferritin which is 307. They thought it possibly is a genetic cardiomyopathy. There are LV moderate to severe lesions. However when I had the angioplasty, they didn’t deem a stent necessary.

Appreciate your replies