I have just seen this post from FB for ET patients….
Anyone see an increase in their potassium level? Have ET Jak 2 positive for 9 years. Been on Hydrea 500 mg 3 times a week. The last 3 blood tests show my potassium levels creeping up above normal. No changes in my diet.
I am on my third blood test in the morning for raised potassium, is this a false reading. I’m ET, Calr and on Aspirin and Interferon
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Grendall
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Others on the forum have reported the same thing. Thrombocytosis can cause Pseudohyperkalemia. There is more than these references in the literature if you care to look.
This is an issue to review with your MPN Care Team to distinguish the artifact of pseudohyperkalemia from actual hyperkalemia. Your doc can best explain how they can make the distinction with the labs.
I had several high potassium readings. I have Jak2 . I cut out nuts, dried fruit to a large extent and am careful with greens. Back to normal for a few months .I take warfarin and hydroxycarbomate .
I’ve had a couple of potassium alarms but only because of delays in processing my blood samples. Evidently potassium tests should be completed soon after the blood is taken, any significant delay can mean a false high.
This was a few years ago, maybe latest tests have been improved.
That is interesting as I had an alarm a couple of weeks ago and ended up in A and E. with alarmingly high potassium levels. It seems that my blood was haemolised as it is very sticky. I too am Cal r+ and have been on 1000mg Hydrea for 4 years as well as Eliquis daily. They have changed my Hydrea to 1500 for 3 days a week. My platelets are always over 600+.
I’ve heard the A and E story a few times for distorted high potassium with MPN, it’s fairly common, I don’t totally understand the science , maybe as Haem to explain
Yes often have high potassium levels....no real reason but I have to have ECG 's etc and another blood test.Always ok!! I've even got a potassium diet to keep them at bay!
Ye - my potassium levels are almost always slightly elevated. I asked my MPN specialist about this and he said if we saw a significant spike we would delve into it but in his opinion the trend is th emost importnat and our bodies can react differently given our MPN status. He told me at my current levels nothing to worry about - I did ask about changing diet to limit additional K intake and he said no need to.
I have PV/Jak2 and high potassium; I make sure they do blood work up with butterfly needle so as to get accurate K levels, I had many draws that were inaccurate with regular blood draw needles. I'm on low K diet and they have me on Lokelma meds to reduce K levels.
UPDATE ON RESULTS.. just had call from GP, my results are back and they have raised again on this blood result to 6.4 on potassium from 6 twice before. I now have to have another blood test on Monday and an ECG. At least the FP isn’t panicking and rushing me to hospital like others have mentioned. I will inform my GP when I see her about the false readings as I don’t see my Heam doc until January now…..
Went to see GP yesterday after recent bloods and ECG. So my potassium has dropped back down to 5 and my ECG was good. I have been on blood pressure tablets for quite a few years, Ramipril being one of them. She stopped this a few weeks ago and seems to have solved the problem. I did mention the our disease appears to be a cause per this forum with the false readings. She did show me a flagged up blood result from 2018 from another surgery where my potassium was high then whilst taking Ramipril back then, therefore she believes it to be the blood pressure medication for me. Also my BP readings appears to be ok now that I have had to come off it so this will be monitored in future… thanks everyone
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