Dismissed by cardiologist with possible dilated cardiomyopathy?

[Hannahbarrym]

I’m only 21- my chest pain started just over 1.5 years ago. I waited what felt like an awful long time for a cardiology and a rheumatology referral.

I was pretty sure it was a problem with my chest, I mean constant chest pain isn’t something you can just ignore! But then my symptoms were accompanied by palpitations, extreme tiredness (my thyroid levels are normal I take levothyroxine), sometimes sweats, shallow breathing at night, blood is extremely hard to draw from my veins during blood tests (when I had my mri it took over 4 attempts to get blood drawn from all 4 points in my arms/hands regardless of that the needle was in my vein) and it didn’t feel like a coincidence I was passing out at every blood test too. Bradycardia, my weight is healthy- infact I have gained a stone in lockdown- a bmi of around 24 but I was eat very well and exercise all I can (more limited now)- I don’t drink/smoke- basically I knew it wasn’t my lifestyle.

I first saw one cardiologist who told me I had PoTs, but wanted a second opinion, his colleague tested me tilt tables, ecg, echo, halter & MRI. The findings were bradycardia trends, syncope, heart block 1&2, heart flutters on the halter, enlarged right & left ventricles (mri) and I couldn’t complete the exercise stress test. The cardiologist just said he wanted another mri in 12 months as occasionally this could suggest dilated cardiomyopathy- but didn’t arrange to see me again! which after reading about the condition actually seemed pretty damn accurate to my symptoms. I don’t know when to go to a&e because my chest pain is constant and I get palpitations daily! I can’t work- it completely impairs my cognitive abilities- I’m very blessed to have my family supporting me- but I feel fully dismissed by my doctor who just wants to refer me to an immunologist. And it’s now getting to the point where I’m completely lost. The first cardiologist put me on sertraline but it didn’t help me at all. He also could t prescribe beta blockers because of the low heart rate.

I don’t know where to go from here? He says he’s done all he can for me asides from refer me on but I felt entirely dismissed as a young female.. is it worth complaining via pals? Will they do anything? I just want to start living! Thankyou so much for any responses.

[Shar28]

Hello, it sounds like you’re going through the mill at the moment! And your loved ones too. It also sounds like you’ve been pretty well checked out and the doctors should have a good picture of what’s going on with your heart. Have you got written reports of your actual test results and a letter from your consultant explaining the diagnosis and next steps? If not, perhaps chase the hospital up via the consultant’s secretary.

Have you discovered Cardiomyopathy UK? They have a very good website and fantastic nurse-run helpline. It might be worth having a look at their information and a chat with their nurses to see what they can suggest going forwards. Here’s the link:

cardiomyopathy.org

All the best. X

[Hannahbarrym in reply to Shar28]

Thankyou for responding. It really has been a hell of a year! I have tried to stay patient with the NHS and their stretched doctors through this difficult time but my doctor has fully referred me to an immunology specialist and felt generally quite dismissive of me as soon as I entered his room? Maybe I’m overthinking it, but when you live with it everyday and wait for an appointment for months it feels disheartening that he can’t help.

I’ve been really well checked out by the doctors! They found several findings; bradycardia trends, heart flutters, heart block1&2, enlarged right and left ventricles (but good blood flow), my doctors always struggle to extract bloods from my veins too even when the canula is inserted into my vein. I also get syncope daily.

but my cardiologist doctor thinks it could be more of a chronic fatigue issue? And I don’t doubt that could be a part of it, but I feel that writing me off as this not being a cardiac issue when the pressure is quite literally inside my chest where my heart is doesn’t sit very well with me. I have no official diagnosis but I absolutely will check out that website

Thankyou so much I’m very grateful for your response.

[SarahJLD]

As Shar28 suggests make sure you have copies of the letters post each appointment and contact secretary if you don’t have them. I see cardiologist yearly (unless symptomatic between appointments) and only get appointment in the weeks before it’s due. I can confirm the cardiomyopathy U.K. website and helpline are very helpful and reassuring if that diagnosis is confirmed.

As someone that suffers with a thyroid problem I would advise getting copies of your last few TFT bloods and ask advice on the thyroid forum. Post your results with the ranges in brackets and some very knowledgable people will respond. Often GP will tell you results are normal but the range is huge and if you are symptomatic they are not normal for you. An under treated thyroid will give you some of the symptoms you describe ; weight gain , low heart rate and palpitations.

[Hannahbarrym in reply to SarahJLD]

I’ve had hypo since I was 11, it did take around 3 years to stabilise my levels into a safe female range and I have 6 monthly blood tests for these, whilst my levels remain level- I can assure you that this is nothing like having an underactive thyroid even when it was at its worst (I’m in around 175mg levo) A hugely different sensation. I’ve gained weight due to my inability to move very much!

Thankyou for your response. I will check out the website! All the best. X

[Thanksnhs]

Hi I have dilated cardiomyopathy, it was confirmed by an echo, I also had all the other tests as well, angiogram, mri etc, although I have palpitations and low blood pressure, I have never had chest pains, if you do have any painful episodes they will check you out in A&E they told me they would rather no one took chances with chest pain, the cardiomyopathy site has a helpline number to speak to a nurse, I hope you can get things sorted out, char

[Hannahbarrym in reply to Thanksnhs]

Thankyou very much char.

I’ve emailed the nurses on that site, I hope you’re well xx

[moods]

Yea, I have Hypertrophic Cardiomyopathy, not quiet the same as yours but similar. It took a long while for me to get proper treatment but once seen by a cardiologist all became better for me. Drug therapy took care of all the palpitations, blood pressure etc. I was assured I could live to a ripe old age and they were correct as that was fifty years ago. All in all it was the medication that made me well but not cured.....Good Luck.

[pablojack]

It sounds as if you have been very well investigated so I will not attempt to provide direct answers. However you do not mention ARB's which are one of the standard prescriptions for cardiomyopathy, usually to address both dilated ventricles and lowEF, which you also do not mention, The difficulty in drawing blood could be a related issue but in my own case drinking a lot of water before the blood draw eliminated my own long standing problems.

You need to work with the physicians and keep a very precise record of all treatments prescribed and the relevant outcomes.

[Hannahbarrym in reply to pablojack]

I cannot take arbs Sadly due to having bradycardia trends in my halter, the cardiologist said he would’ve given me these prior to testing anyway if I could.

The problem is- the waiting lists have been so long- even with my expedited apts, I’ve had no proper treatment even trialled. It’s felt just quite dismissive. Thankyou for your response pablo. X