Hi. This is my first post on this forum so i’m hoping to get some advice! My husband has recently been diagnosed with Polycythaemia vera (PV). He is due to start chemo when we get back from holiday. He has just been to the hospital for his bloods and they have called him back in urgently as his potassium levels are very high. Sounds like this can be quite serious so i was just wondering if anybody else has been in this situation, and how did they sort it out? I have read that you can be put on IV treatment straight away if it is really serious. Obviously we are quite worried but just thought i might get some reassurance from the lovely people on here. Many thanks
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Hello @Fiona2025
Welcome to the Forum, I’m pleased you found us and have posted.
Please don’t panic about your husband’s blood test, an abnormal result doesn’t always mean it’s serious. Hopefully your husband is feeling okay and not having any chest pains, palpitations or shortness of breath.
It’s well known (by nurses and doctors) that incorrect potassium readings can occur if the tube of blood was not mixed properly when the blood was taken, usually causing an elevated level. It’s likely they just repeat the blood test and then let you know what that result is, so hopefully it’s just that the tube wasn’t mixed properly.
High potassium levels aren’t usually linked to Polycythaemia vera (PV), so it’'s unlikely to be his new diagnosis, but can happen with cardiac conditions, diabetes and kidney diseases or some medications. I’m sure this will be sorted quickly for you.
Do let us know how you get on.
Take care, Heidi.
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Heidi - many thanks for your reply. You were exactly right! he went back and had another blood test which came back completely normal…..what a relief.
We were advised that all is good and we should go away and enjoy our holiday so that’s exactly what we are going to do. Thanks again for your quick reply - it is very much appreciated.
Have a good day
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Hi @Fiona2025
I too have Polycythaemia vera (Polycythaemia vera (Polycythaemia vera (PV))) and had a few potassium issues during my time. Can only echo what @Heidi_BloodCancerUK has said. In my case was that I was eating bananas and potassium rich foods the night before which elevated it. As soon as it was flagged I stopped eating them and it was back to normal pretty instantly.
having regular blood tests will be the norm and what’s maybe normal for you may not be normal for your husband - where major concerns are needed is when things are consistently high or low as often there lots of menial factors such as how long the sample has been at the clinic before testing/ contamination/ diet etc.
Starting hydroxy I’m assuming it’ll be a case of ensuring that your husband is ok to start it so they will check for everything if not to help control his hct, platelets, white cells etc but also to limit the potential side effects.
I was diagnosed 5 years ago now so happy to answer any questions from a patients view you may have.
also there are plenty of us here with Polycythaemia vera (PV) and have found it a support and safe place to raise any concerns or read up on other experiences
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Hello there @Fiona2025, welcome to the forum. I’m so sorry to read of your husband’s diagnosis and those confusing test results, what a lot of stress I imagine you’re both going through.
Just wanted to say that I too live with Polycythaemia vera (PV) and have blood test results that can vary month to month and find it really reassuring what dear Nurse @Heidi_BloodCancerUK shared about incorrect readings (thank you Heidi for your wisdom, as ever). Sounds like your husband’s team are open to you approaching them with queries and concerns, which I’d say is excellent. Maybe you’d like to read this great information about Polycythaemia vera (PV) researched by Blood Cancer UK: Polycythaemia vera (PV) | Blood Cancer UK
Blood test results become pretty familiar when living with Polycythaemia vera (PV) as we have so many of them, and I’d say the only one I check fastidiously is my haematocrit as that shows when blood is getting too thick which can increase the potential for clotting, which is our main risk with Polycythaemia vera (PV).
Your husband will likely get used to waiting after each test for whether his haematocrit is less than 45 %. I like to have a little celebration whenever mine is less than 45 %, but I’m sure that feels a long way off for you right now. Just take your time with it all, there’s a lot of blood-related jargon to pick up!
Just a note in case it’s relevant as my own first haematologist didn’t bother alerting me, but do let your husband’s specialists know if you’re planning on procreating as some of the treatments (in my case, hydroxyurea) can affect fertility.
Really glad you found us @Fiona2025 and I’m so glad that potassium test result has been clarified already. Do please let us know how your husband and you get on.
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Thank you to all who replied to my messages. All is okay thankfully and we are looking forward to going away this week for a couple of weeks. I am sure i will be in touch again once my husband starts his chemo tablets. We are keeping everything crossed that any side effects will be minimal and will subside after a while. Take care everybody x
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Hi @Fiona2025 thanks for checking in and updating us.
Have a lovely time on your break away and we look forward to hearing from you both on your return.
Look after yourselves
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