I have PV and my recent blood tests have shown that I have a high level of potassium could it be the hydroxycarbamide that is causing this.

[daffodil2]

Has anyone had this problem and any ideas how to combat it?

[Swede]

Hello, I have no idea but wonder why your level of potassium was checked in the first place?

[daffodil2 in reply to Swede]

When I have my full blood count my haemo also does a blood test on my urine and electrolytes

[Hidden]

I don't know if this will help. It may give you a new angle on the problem. I have PV diagnosed at the end of 2011 and have been taking Hydroxycarbamide along with other drugs since. At the time of my diagnosis I kept being called by the Dr and asked to bring an overnight bag to the Out of Hours service as my recent blood tests had shown my potassium level to be dangerously high. Another test was taken at hospital and I had to wait a while for the result to see if the potassium level had subsided. It had and I was allowed to go home in the early hours of the morning. After it happened twice I was told by haemo that if the test for potassium is not taken reasonably quickly and the blood lies in the phial for longer than it should, the potassium level can rise within the sample (outside the body!) and this gives a false reading as to the level within the body. Therefore I was told not to worry about it and if a blood test is taken for potassium it would be worth mentioning this fact to your GP as mine was not aware of this phenomenon. Please do not take my word for this but have it verified by your haematologist. This will give one less thing to worry about.

The potassium test would just be part of the full spectrum of blood tests taken at time of diagnosis and maybe later to monitor it if it was showing borderline high levels.

Kindest regards.

[daffodil2 in reply to Hidden]

Hello Craisy Daisy Thankyou for your very informative reply I am waiting for the results of another blood test I had taken yesterday .My Gp had contacted me as they had had a call from my haematologist to ask them to retest my blood as my potassium level was high when I went to the hospital last Wednesday. I will keep you informed Thank you

[daffodil2 in reply to Hidden]

I have just had my results they have gone down from 5.8 to 5.4 can you remember what yours were?

[KeithGB]

Crazydaisy has given the same explaination as my GP did, the blood is essential bruising and as part of the chemical breakdown process it releases stored potasium. Nothing to worry about as I'm sure next test will be normal. Have had this happen twice in two years and at each retest it is normal

[daffodil2 in reply to KeithGB]

I have just had the results they have gone down from 5.8 to 5.4 does that sound ok to you thank you

[Hidden]

I am sorry Daffodil but I don't know what the actual readings were. I just tend to put my trust in the haematologist and she appears to be satisfied with my results. If you get a print of your blood results (assuming you are in the UK) the list shows the normal parameters for each result and adjacent to that your actual result and it tends to be highlighted in bold type if it is not within normal parameters so that shows you what it should be and what it actually is. I am sure your doctor would supply you with a computer print if you ask. Also, don't worry about it, just ask and get the reassurance you need and deserve. A GP will normally give you a telephone appointment at a given time (usually in between surgeries) when they will explain your results to you. Just phone reception and ask for a phone appointment and the doctor will phone you back at the time specified. Good luck.

[daffodil2]

Hello Crazy Daisy Thank you for your reply I have just had a phone call from my GP and My results are now normal in fact he said they are spot on thank you for your help Yes I am in the UK Kind regards Daffodil

[daffodil2]

Sorry Crazy Daisy I forgot to tell you that the receptionist had given me the wrong count yesterday it is actually 4.3

[catkinspolymer]

don't eat bananas

[Mazcd Partner MPNVoice]

HI Daffodil, as per the reply from CrazyDaisy, a raised potassium is not a HC thing. Patients with MPNs get falsely high potassium levels especially if the samples have been waiting for a while to be analysed. What we find is that the key is to analyse the sample sometimes in a different type of bottle, and to run it very quickly. If it is still high then other causes need to be considered. So glad to hear that your level has returned to normal. Maz

[MichaelS]

I had this high level potassium at one of my blood tests, last year. I was asked if I had been eating a lot of fruit and veg. As it was summer time, I had been and so I now eat only a couple bananas a week, have very few carrots and the same with tomatoes. All these are high in potassium. It has never been a problem since.

I was diagnosed with PRV in 1983 and have been on Hydroxy in varying amounts all the time. About 5 years ago it migrated to MF, but still on Hydroxy. Take care and I am glad that your Potassium levels are now within limits. Michael

[Nickyb57]

I had this problem for a while. Then the phlebotomist at the surgery found out that you should have blood taken uncuffed. No problem since then!