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British Heart Foundation
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No proper diagnosis of heart condition.

Hi all, my name is Jonathan I’m 29. A few months back I went for an echocardiogram. I then received a letter to see the Cardiologist who said I might have Hypertrophic Cardiomyopathy. The cardiologist then referred for an MRI scan. During this time I received another letter for a follow up session with the cardiologist in August but I hadn’t had my MRI scan. After the scan I called the hospital to get my results but no one has back to me. I called to speak to the cardiologist but my messages are clearly not being passed. I want to be fully diagnosed and know what steps I need to take to help better my condition (if I have it)

Any advice on what I should I do?

Thanks,

Jonathan

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Heya , im 18 and i get completley what you mean about messages not getting through - unfortunatley due to the NHS being stretched the way it is at the moment , if you arent life threatening , things are going to take a lot longer to get the answers you need - i was told i need open heart surgery over a year ago now and i have had to push and push for the little information i do have. All i can say really is keep pushing - calling and writing until you have what you need - although this will still take a while , it will happen alot quicker than if you just gave up. If you are worried about your heart health it is best to look into things you can do to keep it at a healthy level until you find out more - such as sports - foods and other things , hopefully this helped a little . if not for advice but even just to know you arent alone

Cheska xx

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Thanks Cheska. I will definitely keep pushing through, hoping to get some answers and it means to know i am not alone in this x

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Hi and welcome! Can you put in approximate dates of scans and consultations please. Cardiology departments are seriously overloaded at present so delays can seem long. If they feel there is a serious issue they will keep you in or call you back post haste!

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Hi Micheal,

My timescale of appointments etc was as follows:

Symptoms:

October 2017 - went to the doctors complaining of chest pain and short breath for the last couple of months. Initially I thought it was my asthma returning, but I whenever I was sleeping I would sleep elevated or intbhe recovery position so I can breathe properly. I was referred to the hospital for some blood tests and chest scan to be done.

November 2017 - chest scan - blood test

December - 2017 back to the doctors for the results blood test shows no heart disease - but chest scan shows enlargement of the heart. Referred to the hospital for an echocardiogram and to now be seen by a Cardiologist.

Jan - 2018 Echocardiogram appointment. Once I got my results which took a week and half. I was called by the Cardiologist and they told me they have referred to go and have an MRI scan done on my heart. Letter etc will be sent to me in the post.

Feb 2018 - MRI Scan - prior to my scan a letter was sent to me to say my next appointment will be on August 15.

After I had my scan I asked how long it would take to get the results. I was told it will take 2 weeks, they will call me good or bad. I waited to two weeks heads nothing gave them another week or so still nothing. So I decided to call them but I didn’t succeed in getting the answers I needed. Since the end of June I gave up in calling. But I feel my symptoms are getting worse and I’ve had a change of diet/lifestyle.

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Your initial tests seem to have gone through at what appears the norm for busy cardiology clinics these days. I actually had a six week delay from my GP's referral to being seen in the Urgent Chest Pain Clinic. Everything then jogged along at a similar pace to you until I was referred to another hospital for a quadruple. Then like you things seemed to go to sleep for months. If they were seriously concerned for your welfare they would contact you. I suspect people who say you will get the results in two weeks do not realise how bad communication has become. Letters can also go missing. After my initial angiogram the cardiologist who had carried it out wrote to my GP copying the letter to me - it never arrived. Fortunately he had come to my bedside an couple of hours later and discussed things in depth. At this stage I would leave things as your appointment is only four weeks away.

People have mentioned PALS. When there were issues with my late mother I eventually raised it with PALS. It dragged on for months and after getting a nonsensical letter from the wrong department I gave up as life is too short. I was once asked to chase up a medical report from a consultant. He was not overhappy next time I saw him saying he was extremely busy. I got the impression that some questions asked he deemed irrelevant. Fortunately our consultant/patient relationship remained good for many years until he moved on. So personally I am wary of more than a gentle chase up.

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Keep chasing. Go through the

Cardiology secretary and don’t be surprised if you wait 6-8 weeks for a letter/results. As MichaelJH has said, cardiology is overworked in just about every hospital so unless it is life threatening, things tend to take time.

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I’m assuming you’re in the UK? Call PALs (Patient Advice and Liaison) service. They will take you through what’s happened and see if they can do to help. Usually v good at getting the system unblocked!

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Hi, yes I’m UK based. I shall give PALs a call and see what they can do for me. Thanks.

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Be aware that your doctor may not warm to you involving PALS. Is there something you can do diplomatically, such as putting your request in writing?

The consultation looks like it is intended to update you? I know things are frustratingly slow with the NHS.

We paid for my wife to have a scan privately. It was only as a consequence of that that any treatment was given at all.

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Have you checked with your GP apologies if you have. I found results from scans and tests are sent to them far quicker than the hospital get back to me. My GP in Scotland can access any test results now online directly which saves so much time

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Sounds like me but I had to wait a lot longer than that so I ended up going privately for peace of mind. I ended up being diagnosed with hocm in April this year, I’m 39 and started getting symptoms in November 2017. I’m only just on medication for it now and if it doesn’t improve then I’ll be having a myectomy. Do any of your family have HCM? X

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