High potassium anyone

[Mrbeasley]

Hi I have been taking hydroxy for 4yrs now. Recently my platelets started climbing up again. At the same time my regular doctor sent me for some tests and my potassium was at 5.6. I had 2further tests and it has come down to 5.4. my blood glucose is also up. My doctor not my oncologist is concerned. Have any of you had this problem.

[hunter5582]

Something to be aware of when you have thrombocytosis is pseudohyperkalemia.

"Pseudohyperkalemia describes a falsely elevated potassium level upon measurement of the serum electrolyte concentration due to disruption of cells during the collection or processing of the sample." ncbi.nlm.nih.gov/pmc/articl....

"Marked increase in platelet count (thrombocytosis) was the first identified cause of pseudohyperkalemia [5]. It is due to increased in vitro release of potassium from activated platelets during the process of clotting and is therefore only a problem if serum is used to measure potassium." acutecaretesting.org/en/art....

ncbi.nlm.nih.gov/pmc/articl...

proceedings.med.ucla.edu/wp...

When you have thrombocytosis, it is important to use the correct lab to measure potassium. Specifically, to use plasma measurement technique rather than serum. Suggest you check on which type of lab was done. Note that some doctors not familiar with MPNs are unaware of this issue.

[PhysAssist in reply to hunter5582]

What Hunter said is entirely on point- I was getting recommendations [even from my MPN specialists] to go on a low potassium diet, until I sent them literature about pseudo-hyperkalemia being associated with erythrocytosis.

Pseudohyperkalemia in patients with increased cellular components of blood

amjmedsci.org/article/S0002...

Pseudohyperkalemia in Serum: A New Insight into an Old Phenomenon

clinmedres.org/content/6/1/...

Now they order a whole blood potassium in addition to the CMP, which just tests serum potassium levels, and it has been invariably normal.

Best,

PA

[stevenjust]

I have had this many times. On4 occasion’s I had a call from the hospital stating that I need to attend A&E straight away as my potassium level is dangerously high, each time I went and waited ages only to be tested and told it’s a little high but fine. The 5th time I got the call I said I’m not going to A&E and just carried on as normal.

[Jasbak22 in reply to stevenjust]

yes same here went in the first two times then explained the issue and they said fair enough. I’ve also heard that the time between blood being taken and the lab testing are a factor in this too.

[Fivecatsandcounting in reply to stevenjust]

The same happened with me too. My doc feels very uncomfortable with the raised levels but I can reassure her now that it is part of my condition. Was scary the first time I got the call to go to a and e urgently. I actually thought I was about to have a heart attack 😜💪🥰

[PhysAssist in reply to Fivecatsandcounting]

I also [usually] remember to tell the phlebotomist not to tighten the tourniquet too excessively tight- which is another potential cause for spurious elevations of potassium.

[ETket]

I’ve had panicked calls from my GP asking if I was ok, when I’ve been feeling absolutely fine, because of these false high potassium readings. I think it’s a very widespread experience for people with an MPN and regular blood tests.

[Tipsy2023]

morning I have also had the call from G P saying potassium is dangerously high that u must stop anti inflammatory medication and take a diuretic for a month . This was prior to diagnosis of ET Jak 2 . Needless to say I then felt worse but it did prompt further tests . I know raised potassium can be a result of rapid breakdown of cells if our platelets have been high and reduce quickly but do we need to point out to GPs the pseudo possibility ? L

[PhysAssist in reply to Tipsy2023]

In short- Yes!

See my post with links above.

Best,

PA

[JSKly]

hello. I’m sorry you’ve got this worry. If your doctor isn’t a specialist he/she may not know that the blood readings for us with these disorders need to be done differently. I understand they need to be done by hand. Perhaps suggest the lab reads them differently.

[champ30]

Hi, I am always near or above the required level of potassium! I am on hydroxicarbimide and platelets high. I even now have been given a potassium diet sheet to see the foods which are the highest and to avoid! I try to stick to it but it's not easy but at least I am aware.When my levels are high the nurses check with another blood test to make sure I had a false reading.Regards Lynn.

[onlineallthetime]

Yes, they had prescribed my mother a potassium lowering medication 3 times and started her on a low potassium diet before I stumbled upon pseudohyperkalemia myself (thank you internet) and took her to have a serum and plasma test done concurrently. I'd had her hold off on taking the medication the 3rd time so we could investigate and I'm glad I did because although her serum levels were high the plasma levels were just at the edge of being too low.

I was more than a little miffed that an NP at a hematologist's practice was seemingly unaware that this is something their patients are predisposed to and need to keep an eye on. I brought printed materials for her and have been seeing the Dr. himself ever since. Still, I have to take her to an independent lab to have plasma levels checked periodically because their own lab isn't even capable of doing that test.

To everyone here, please verify before taking the potassium binding medication and if it is pseudohyperkalemia make sure it is in your charts. The dangers of low potassium are the same as high potassium.

[PhysAssist in reply to onlineallthetime]

Good on you for taking action to protect your mum!

[lynnieb]

Before I was diagnosed with ET, my potassium kept shooting up. I'd get calls to go to A + E in the middle of the night because it was 6 or 7. When I was finally sent to haem, they explained that high platelets gives a faux high potassium reading. Who knew? Not the emergency doctors - my platelets were well over 1000 then and they didn't notice that, or the fact that was why my potassium was so high.

[Pollygator in reply to lynnieb]

Hi, that was my experience exactly. Poor GP's get a very big fright and are quite reactive.

[ainslie]

false high potassium is commonly reported with MPN, best discuss with haem

[Carol0925]

Hi, my potassium has been running at 5.4 since beginning of December. I actually spoke with my Haematologist last night after seeing my blood results from 28/12. She reassured me that it’s not a problem and often happens when starting Interferon. My ALT is slightly raised too. But on the good side my platelets have dropped to 390. I also reassured to read Hunter’s reply too.