Heart

[Hahag]

So who has heart flutters fast heart rate practicality doing nothing it wakes me up I had stress test I had angiogram last year every think ok I had a monitor on for 3 days showed pvc svts and ectopic beats my resting heart is 80 but goes up to 137 doing hardly any think drs are like well ur monitor didn't show any think serious could all this be from my Et

[mhos61]

I don’t know if ET could cause this. Have you asked your haematologist if there is a link?

If you can’t get any satisfaction I would be inclined to get a second opinion.

Mary

[Grumpyfairy]

I have heart flutters, fast heart rate and then the complete opposite. Was referred to cardiology 12 months ago, had monitor fitted, which nothing happened when on, and ultrasound on heart, so was discharged by them. Past few months been having problems again, heart rate shooting up to 130 doing nothing, and then another day dropping to 46. My Heamatology doctor says see your gp, so waiting for another appointment with cardiologist. Also get a thud which someone told me is missed beat. Never had these problems before diagnosed with ET, just want answers as worried there missing something.

[Eadaoin in reply to Grumpyfairy]

I suggest you keep a diary of all of the happenings. This is useful when you get back to a cardiologist as you surely will at some point. I have had ET for 20 years. I had an occasional slowing heart rate which became more frequent. The Haematology doctor referred me to cardiology who put in a pacemaker. I then got AF which, after many years, had become daily 120 bpm episodes. I recently had an Ablation. None of it was caused by ET. I always kept a diary to show the doctors the facts of what I was living with. Hope this helps.

[Yvette49]

Hi,

I have Polycythaemia jak2+ I am on hydroxycarbomide for the past 3 years.

But I am aware now that I had the symptoms of it 25 years ago.

And at this time I had what I called “a skipped heart beat” ( I still don’t know what the medical name for it is) I can feel the skip happening and occasionally feel light headed for that second.

I have had heart monitor ( about 25 years ago) done for 3 days, which showed it. Since then I am on Sotilol tablets twice a day, it hasn’t stopped them but presume they are protecting me in some way.

I have also found out that a cousin of mine and her daughter, and my sister and her daughter also has this, skipped beat, so it seams to run in our family with the females.

Not sure if this is the same as yours.

Yvette

[Cja1956]

I had similar issues some years ago. I didn’t link it to ET back then. But every morning I would wake up to walk my dog and I felt like I was going to pass out. I also went to a cardiologist and he said everything was fine. My hemotologist also didn’t pick up on it. I thought it was due to this new “healthy” diet I was on. I realize from being on this forum now it was the Illness.

Feel better soon.

Cindy

[hunter5582]

I developed Atrial Tachycardia last year which required surgery (catheter ablation). It was unrelated to the Polycythemia. My understanding is that MPNs can cause "plumbing" cardio problems (thrombosis, hyperviscosity, etc.), but not electrical problems. There is some research out on a link between JAK2+ increasing inflammatory cytokine load, but it seems unlikely to be that. My docs told me the two things were not related - sometimes we have more than one thing wrong with us. Aging is not for sissies!

[Osteomyelio]

It happens to me when I take my Anagrelide. They gave me metoprolol but that made me drowsy. Now when it flutters, I drink salty chicken broth and the fluttering goes away- I don’t know why. I do have hyponatremia (low sodium). The heart has an interesting electrolyte balance. I still must take my anagrelide for myelofibrosis platelet control.

[Wyebird]

Are you on anagrelide?

[Tigger59]

Hi, I was diagnosed 10 year ago ET JAK2 pos, I have had these heart flutterings, thuds, etc also off and on for the past 12 years, one of the reasons for going to GP in the first place before being diagnosed. I have had all the tests, ECG, HOME HEART monitering and nothing shows up. None of the doctors can explain why, I just try now and not panic when they occur, but I would much prefer to have answers. My blood readings are stable and have never gone above 530, on low dose aspirin, possibly starting hydroxycarbomide in September due to turning 60!

[Pollygator]

Hi. I definitely had similar symptoms waking me up at night prior to being diagnosed with ET 3 years ago. Since taking low dose aspirin and reducing my evening meal and alcohol intake, I sometimes get heart flutters but not that horrible stopping sensation. I recently started taking hydroxy and I feel really good. I do get itchy hands now.

[clubdino]

In the past couple years I have started getting heart palpitations on a regular basis. I saw a cardiologist and they did an ultrasound on my heart and nothing was found. I don't think it's related to my ET though bc I've had the ET for so long and this never happened before. I have read that peri-menopause can cause heart palpitations due to changes in hormones and I am at that age. 41 y/o female.

[paintbox]

Hi I certainly have this, in fact it's come back the last two days (hormone related??) after not having experienced it for a few months.

Like Tigger 59, I too initially went to my GP about this near constant fluttering feeling and pain in my chest before diagnosis with ET. I've had the racing heart for the last 3 years but it became especially bad last summer. I was really breathless all the time, esp going up stairs. In the end I thought it was anxiety because it got worse when I was talking to people. Then I was diagnosed ET JAK2+ in Nov last year and it made sense to me at that point it was linked to ET as since starting aspirin, I've barely experienced it in the day.

What you describe Grumpyfairy, is just how it is when it wakes me up: a racing, pumping fluttering; then the abruptly horrible pause feeling that Pollygater mentioned, before the rhythm starts again & eventually calms down. I find it really quite unnerving.

I've had an ECG and tested for AF which my mum, aunt & uncle have but have been told I don't. I pressumed that the platelet levels made blood flow slower due to it being thicker?!

[Karol_Rua]

Iron deficiency anaemia would give you horrific palpitations. Right now, I cant climb the stairs without my heart fluttering around like crazy. I have ET JAK2+ and waiting for an iron infusion to help my anaemia...I'm sure your doc would have ran some blood tests and low haemoglobin would have shown up!!! But just in case. . .

[Hahag]

Yes all checked every think ok