I recently started taking HU for Essential thrombocythemia ('ET'). Since then I have been having lots of palpitations which I have never had before. My Apple Watch, with the Qaly app, is saying I am having afib, ventricular tachycardia & lots of PVC’s (67 in 30 seconds). Every medical person says it is not caused by the HU. Has anyone else had this problem?
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Hello there @GillyD-L, welcome to the forum. I’m sorry to read of your concerns about those palpitations, that does sound worrying on top of living with Essential thrombocythemia ('ET'). Just checking that by HU you mean hydroxyurea?
Having survived a heart attack I know how uncomfortable heart palpitations can feel—not that I’m saying that is what you’re experiencing! They’re not pleasant, I really feel for you. May I ask if you’re feeling the palpitations or is it that they’re registering with your watch? I only ask as I’ve read that Apple Watches are notoriously variable with their heart health accuracy as they can physically slip out of position too easily (my other half has one and stopped trusting it for accuracy).
We forum members can’t offer medical advice, and it sounds like your health tech is drawing attention to palpitations which I’d say is best to talk through with your specialists. Might be time to be pleasantly assertive if they’re not heeding your concerns.
I live with Polycythaemia vera ('PV') which you likely know is closely related to Essential thrombocythemia ('ET') and I’ve taken hydroxyurea daily for nearly 3 years now. To be honest, amongst all its potential side effects, I haven’t heard of palpitations being linked to hydroxyurea. However, I have felt them previously due to anxiety. Could some sneaky anxiety be causing your palpitations, I wonder?
In the Blood Cancer UK information about ET and its treatment side effects and the same for Polycythaemia vera ('PV') there is no mention of palpitations, same at MPN Voice.
I’d really urge you to speak to your specialists as they are the best people to check the source of those palpitations. Maybe you would like to talk it over with the expert Blood Cancer UK nurses too, their free number is 0808 2080 888.
Hope that helps a little @GillyD-L, do please let us know how you get on.
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Thanks so much Duncan. I can totally feel them and they are often when I’m relaxed.
I will keep asking questions.
All the best,
Gilly
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Oh you’re very welcome, I’m just sorry you’re feeling them @GillyD-L.
Keep asking questions and try not to be fobbed off, I’d say. Something I’ve had to learn is that we can live with many coexisting conditions and that not all of them will be spotted unless we draw our doctor’s attention to them. I’ll keep my fingers crossed that the palpitations are very treatable, please let us know.
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Hello @GillyD-L
Thank you for your post and welcome to our forum.
We are so sorry to hear about your diagnosis of Essential thrombocythemia ('ET') and that you are experiencing palpitations.
We can imagine these can feel a little scary at times.
We would strongly encourage you to visit your GP or speak to your haematology team as soon as you can.
Palpitations themselves and heart arrhythmia are not listed on as side effects as hydroxycarbamide on the BNF - Hydroxycarbamide | Drugs | BNF | NICE and therefore it is important to get these checked out, especially as they are new.
There are many reasons that may cause palpitations which can range from psychological such as more anxiety or stress or physiological reasons such as electrolyte imbalances, anaemia, dehydration, low blood sugar, hormone imbalances, deficiencies, lack of sleep etc. Therefore the team or GP will likely need to assess this. They may want to obtain blood tests to check your haemoglobin and electrolytes.
Caffeine, alcohol and nicotine can also increase heart-rate/ likelihood of palpitations.
Sometimes being aware of your heartbeat and keep consciously noticing this, can also make these more noticeable.
It is also important to note that although fitness and smart watches can be helpful devices and provide good insights, they are not a medical grade device and therefore you may need further evaluations in person such as an ECG.
If you begin to feel dizzy, have chest pain or feel these are getting increasingly worse we would advise you to call 999/ go to A&E.
Do take care & keep us updated,
Emma (Support Services Nurse)
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