Abnormal ECG

[Helenlouise40]

Hi all

Having a panic so thought I would see if anyone can give any advice or just generally calm me down abit.

Had a heart scan last year that showed some mild thickening and the dr eventually agreed to refer me to a cardiologist, whom I’m seeing in August. A few weeks ago I had a few days of having some palpitations so I went my gp who did blood test (all fine) and ordered an ecg. Had the ecg today and the results where abnormal, not sure how. I have been told it’s not urgent enough that I have to go to hospital but to have an appointment with my gp to discuss.

i have had no other symptoms, no breathlessness etc.

To be honest im freaking out. I am sure it’s PAH and im so scared. I can’t stop reading online about heart issues with scleroderma and it just seems hopeless.

I have limited scleroderma and I am not on any medications apart from blood pressure and something for heartburn as I do not have any major issues so far. I was diagnosed 5 years ago.

any advice greatly appreciated x

[Castella]

Hi thereI have limited and did have similar worries about PAH after palpitations. You are in line to see a cardiologist so do make sure to mention that concern. Your GP may have some suggestions meanwhile. Also, for yourself, reduce what other pressures you have, and take time every day to relax/enjoy things. This may sound clichéd, but your heart will appreciate it!

[Clangerscat]

Hi Helenlouise, it’s so easy to jump to conclusions with this disease isn’t it. Trouble is there seems to be so much that can go wrong! But my experience so far is that when ever I’ve thought the worst it is something easily explained and not necessarily connected to scleroderma. So take a deep breath, you don’t have any other symptoms and you will know when you see your GP. Hope the appointment isn’t to far away, good luck and take care.

[positivedaybyday]

Hi Helen Louise,Are you under a scleroderma team at a hospital?

If so make sure they are aware of your palpitations & ECG, so if necessary they can investigate further.

When you see the Cardiologist make sure he knows you have limited Scleroderma & feed any results back to your team.

The Internet can be a very frightening place!

Your hospital should be able to supply you leaflets on how Scleroderma can affect your organs. Again this is not set in stone as it depends on your individual case.

I have a folder with all the leaflets. I've found them very useful for friends & family.

The problem is there are so many individual variation in our disease.

I have Acute Diffuse Systemic Sclerosis. I have regular lung function tests. ECG's, Echocardiograms & periodically bone density tests.

I called into my Drs one day & used a machine in the waiting room which measured your heart function. All of a sudden the red lights came on & the receptionist panicked. I was ushered in for an ECG which came out normal. I already knew that I have a leaky valve due to slight early damage from this disease & as I have regular hospital checks by my super team, I wasn't worried.

Palpitations seem to be a common thread with our disease & as others have mentioned take deep breaths & relax. Panic or anxiety can make it worse.

I hope this insight helps you a little!

[Ffrwd]

Hi, try not to worry and stress yourself over problems that are mainly in your imagination! PAH is less common in limited scleroderma. ECG’s can be ‘abnormal’ for a wide range of reasons, many of which will be totally unrelated to scleroderma. Until you have more information stop searching the internet and jumping to worst case scenario. Hope your GP can reassure you soon

[marie5454]

Hi, many years ago, I had a similar experience, some dizziness, bit of chest pain. I mentioned it to my doctor and I had an egg which showed an abnormal result, then I had an angiography which was clear of anything serious, so the cardiologist concluded that it was Cardiac syndrome, otherwise known as Microvascular Angina, meaning the small capillaries in the heart go into spasms. It all settled down and I'm just taking statins, bp med and amitryptilline for raynauds. Not sure what else is going on but I'm fine otherwise. I'm sure your cardiologist/GP will answer any questions you have but try not to worry!

[Redwine53]

I have just had an echocardiogram and lung function test recently and when I saw my rheumatologist she said I had a leaky heart valve and was going to look at the results to see if I have pulmonary hypertension. Like you I went into panic mode, read too much on Google and decided I was going to die in 2 to 3 years. Hot footed to my gp, who couldn’t tell me much as hadn’t had the actual test results, but reassured me, listened to my leaky valve and said it didn’t sound too loud.She is writing to my rheumatologist to see who will be referring me to cardiology.

I have a rheumatology appointment in July and I am wondering what she is going to tell me.

Lung function is worse too.

Ahh, just hate this disease, been referred fo counselling too.

Try to keep calm and enjoy the little things in life xxx

[Bkart]

Hi Helenlouise40, I can understand your concerns, your symptoms can be attributable to several heart conditions other than PAH all of which including PAH are treatable. As others have said please don’t panic, it’s hard waiting for a Consultation but don’t let your mind go into overdrive. I’m not by any means dismissing your symptoms, I’ve had quite complex heart problems for twenty years so I know how easy it is for that to happen but at the other end of the scale even simple ectopic heartbeats can cause palpitations, chest pain etc., again I’m not implying that is the case though.

Whatever the cause it’s good to research but wait for a diagnosis and if there is a problem, hopefully not, you will receive the best attention. You can lead a long life even with these conditions and good that the NHS is following this up for you. Wishing you all the best and take care.

[lynntregaron]

A couple of years ago I had numerous bouts of feeling light headed some of which lasted for up to an hour. An ECG showed ectopic heart beats which is an extra beat although if you feel your pulse it feels like a beat is missing. I also had palpitations. A 7 day 24 hour ECG showed several ectopic heart beats but not enough to cause undue concern. An echocardiogram was normal apart from a slightly leaking valve which I have had for years. Leaking valves and ectopic heart beats are common as we age and usually nothing to do with our scleroderma; they need investigating but please try not to worry in the meantime.

[Rhythmic in reply to lynntregaron]

Good to read your comments lynntregaron. I too have been diagnosed with leaking aortic valve and ectopic heart beats, and am on dapagliflozin (forxiga). When I first found this site in February 2024 I was going through all the shock and anxiety of just being diagnosed with the leaking valve, and like so many others looked it up online and was even more frightened. I thought I was going to die very soon! The magic words my cardiologist forgot to tell me till I saw him a second time, were that in his opinion my condition was mild, and that if he lived to my age (80) he would be happy! Just to be sure he arranged a perfusion test - stress/rest test, which sounds frightening as it involves taking a radio-active substance (which quickly dissipates afterwards) , because I was having chest pains, dizziness and extreme tiredness. In addition, I have the annoying ailment (perhaps linked to my Meniere's disease), of hearing my heartbeat all the time in my right ear, due to pulsatile tinnitus which I've had since 2020. It means I hear my erratic heart, especially at night, slowing down, stopping, then starting up again!

I echo your comment, lynntregaron, about leaking heart valves and ectopic heartbeats occurring as we age. We wear out! It's natural. So I probably won't need to post a message again, but want to thank all you kind people who were so supportive when I first posted. This is a comforting and informative site for all of us with heart problems. For younger sufferers I hope you don't have to wait too long for treatment, but I was lucky living in Oxford to be picked up, brushed down, and able start all over again with my life.

[Helenlouise40]

thank you so much everyone for your wonderful replies they have made me feel so much better. Managed to see my GP who did not seem overly concerned and thinks it is simply related to the mild thickening of anything. No issues when she listened to my heart. She doesn’t think it’s worth repeating the ECG and thinks I am fine to wait until my cardiology appointment in August. A wait and see case. I am feeling much calmer about it all. Nothing I can do but get on with things until then. Thanks again everyone , this site makes me feel much less alone.