Hi guys I haven’t posted on here for a while so this is a bit of a long post alert but WOW what a morning I’ve had.
In January after having an echocardiogram I was told I have left ventricular systolic dysfunction with an ejection fraction of 40-50% and was then told I have heart failure and then was put on medications at the start of February Ivabradine 2.5mg twice a day and Ramipril 1.25mg every night. I was then awaiting a 7 day monitor and cardiac stress MRI on the NHS but the waiting list was so backlogged.
I decided to go private with my tests and paid for a private consultation and paid privately for the 7 day monitor and cardiac stress MRI which was done this past Monday. I’ve just had my follow up consultation with the private cardiologist today regarding my 7 day monitor and cardiac stress MRI, I was so nervous this morning expecting the worse.
The cardiologist told me I don’t have heart failure or cardiomyopathy, he said there where no significant findings on the 7 day monitor a few ectopics here and there but he said anyone and everyone will get them and it’s nothing to be concerned about.
The cardiac stress MRI didn’t show any evidence of damage to the heart, the ventricles are normal, the valves, the structure and shape is normal and there’s no evidence of cardiomyopathy or athletes heart, my ejection fraction is 62% but he did say I could be suffering with POTS following having COVID in October and he’s going to monitor me on the NHS going forward.
He said I don’t need to be taking the ivabradine or ramipril that I’ve been put on by the NHS cardiologist as there’s no need for me to be having it as my heart is fine and I don’t have cardiomyopathy and I’m not in heart failure, I’m so overwhelmed, happy, confused and angry because this past 6 months has been horrendous.
How can the echocardiogram I had back in January tell me I have left ventricular systolic dysfunction and with an ejection fraction of 40-50% and to be then told I have heart failure and to be started on medications for this.
I’m so confused could I have been massively misdiagnosed from the beginning and the echo was wrong or could somehow the meds of fixed the problem quickly? I only started the ivabradine and ramipril in February so surely that hasn’t fixed it so fast in the space of 3 months! my heads all over the place right now I don’t no whether to laugh, cry, scream or shout!
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Liam-James
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Oh goodness. That is one of the scariest things I have ever read .How could your previous cardio. have got it so wrong? Once your happiness has subsided I would be inclined to try and find out what happened with the previous nhs assessment. Get a written doc. you can show the dept. where you had the first diagnosis .What you write is disgraceful and needs to be exposed. It may have happened to many others.My own diagnosis earlier this years had a lot of questionable issues in it with only one of which I feel confident does exist .
Interestingly, I had exactly the reverse! The Cardiologist I went to privately (due to long wait fir NHS Appt) did an echo, exercise stress test and a halter monitor for a week, then said ‘there’s nothing wrong with your heart’. Three weeks I had the first of three HAs (which were in close succession) and 9 stents, It seems things can change, or be read differently, even if close in time.
Echocardiograms are rarely 'wrong' but the reader-interpreter can be mistaken. The person can miss things or/and misinterpret what is on the scan as permanent damage that later either self-heals or responds brilliantly to a medication regime. BTW, an EF in the 40-50% range is 'normal'-ish, that you now have an EF of 62% is fabulous
For example, at the time you had the echo (January - was that 2021?) your scan indicated the conditions, you were put on a medication regime and put on the list for follow-up investigation. Subsequent investigations demonstrate either a mis-read or that you've been one of the lucky few who has responded quite satisfactorily to the meds.
I don't have the same conditions you have but I can say from personal experience it is entirely possible for a medications regime to work wonders in a shockingly short time - within a month of being on mine, I was so recovered I had a cardiac nurse call me a moaning fake and a cath lab tech suggest I was unfairly 'getting the star treatment' owing to how 'bouncy' (her words) I was coming in for an echo.
Of course she didn't apologise when she saw the extent of the sadly permanent damage on the monitor but she did stop treating me as a time waster and respectfully answered my questions. She also made a point of opening the audio and turning the monitor so I could hear and see the damage for myself.
Whilst on the medications you chose to 'go private' (I've done that and never regretted it - once the private consultant got a look-in he put me on his NHS list); your private consultant did investigations including a stress MRI which indicates the original findings on the NHS echo are no longer present. And bonus, you've gone onto the private consultant's NHS list.
I'd be doing a major happy dance at this point, me
Long Covid may have a part in why the NHS echo showed certain conditions including what your private consultant suspects is Covid-induced PoTS. Long Covid is so new a recognised condition and is presenting as so different complications that it is difficult for medics to distinguish and formulate an appropriate treatment plan. I think it's going to be years on before all the complications SARS-CoV-2 (Covid-19) can cause are fully recognised and adequate treatment regimes developed.
Be sure to get the new findings and any new treatment plan in writing and treat the hard copy as being as precious a document as your title deeds/passport/birth certificate.
If your current consultant is happy for you to stop the meds he feels unwarranted, his advice would be what I'd be taking.
You've really been on a roller coaster the past six months - you may want to ask your consultant (via his secretary, those people are STARS in all caps) for referral to counselling to help you cope with your very reasonable anger at what you have been put through.
Most counselling for that is currently done online with the aid of hard copy 'self-help' books and leans heavily towards the therapy model called 'cognitive behavioural therapy' - it's basically a method for retraining the how the brain responds to traumatic events, anxiety, and stress. You'd learn how to recognise 'negative thinking' and self-talk your way to a more positive way of looking at things.
After simultaneous life-wobbles knocked me for six, I found cognitive behavioural therapy very helpful and many years on still use the techniques.
Hi. This must have been so unnerving and distressing for you. It’s so difficult to know which test results you can rely on. However, if my test results are accurate, then my heart has improved in short space of time. After an STEMI, PCI and stent in LAD in October last year had follow up echocardiogram in November (at same time admitted as unwell and had another stent fixed RCA). Echo said 40-45% EF mild LVD. Increased meds. December- micro vascular dysfunction diagnosis during yet ant angiogram. January echo EF up to 50%. Further hospital admission March - echo EF now 60%! I immediately asked if I could stop some meds (on 15 tablets a day) but told no. Meds and my efforts with exercise and diet have apparently done this so need to continue. Sadly still have angina issues and erratic heart beats have started in last week ( probably stress ) but my heart is functioning well. So it can happen that you can increase EF in short space of time. I hope this turns out to be the case for you. But can appreciate your turmoil in having such mixed results!! Totally agree with previous posts about getting hard copies of results! By the way why did they say you had heart failure? Based on what? - if you don’t mind sharing. Good luck
An EF reading of under 46 is deemed heart failure, so they wouldn't necessarily do any further tests at that point. The only other test that I can think of would be an MRI, which may have been the next step once they saw how you responded to your meds. Your EF was between 40-50 & as echos are not an exact science, a technician interprets the results, it seems to me that they've erred in the side of caution or as previously said the meds have increased your EF. I understand your anger but don't let that overtake you & get in the way of moving forward.
Best wishes
Thank you for sharing info. I can totally understand your concerns. I hope the info in the other posts helps to ease some of that and help you decide what to do next. In my mind I would need to go to original cardiologist who discussed echo with you and ask him/her to explain the disparity between the two results. Hopefully it really is just a case of meds working.
I had bad reaction to ramipril. It gave me terrible angina. I only discovered that it was the ramipril becausr I stopped it cos of pneumonia. It was only 1.25mg but wow. So i never went back on it and angina improved a lot (till now, long story!!)
I had a similar experience having been diagnosed with "probable" idiopathic cardiomyopathy in 2018. Ef was 45% and left ventricle was significantly enlarged.Apart from bradycardia I had no symptoms. This was private diagnosis and I was placed on candesartan but not beta blockers due to the bradycardia,Follow up with nhs one year later showed no dilated cardiomyopathy and an ef of 62%. I still take candesartan as a prophylactic despite being advised that there is no need.
Interestingly I felt that the nhs treatment from st Barts was superior to the private consultations. Especialy since the cardiac nurse doing the ultrasound scan casually said that she saw no evidence of cardiomyopathy and estimated the ef at exactly 62%! Who needs a cardiologist.
This is not to say that nhs is superior to private, or vice versa, or that I doubt any of the results. However this is not an exact science and we have to take as much control of our own situation as possible.
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