ET Jak2 W/Critically High Potassium - Not

[Mishie14]

Spent most of yesterday day dealing with weekly blood tests and then in ER for quite a while. My doctor saw the lab blood test results and called to tell me to go to ER immediately. She said my potassium level jumped up to critical level 6.1 and I needed a drug cocktail to knock it down. This level is life threatening so wasted no time, dropped everything to get to ER. The cocktail (key parts are insulin and dextrose) is only given locally by hospital ERs. After a long wait finally got to see doctor. He ordered more blood tests to confirm potassium is really that high and nothing is unusual for kidney and liver values that could indicate a root cause. He wanted the blood draw to be from an IV which he also wanted set up to be ready for the cocktail if high potassium was confirmed and then more blood tests to confirm the cocktail worked. The first test by ER confirmed my potassium was NOT high at all at 4.7 and lab error was likely the cause of the earlier 6.1 reading. My potassium was not that high but was reported that high because of blood sample error. He said this is a frequent event in the ER! He also said he prefers blood draws from IVs vs butterflies that the lab uses as IVs yield a better, cleaner, coagulation free blood sample. Several key learnings for me not the least of which are 1) red blood cells carry potassium that is released when the cells are disturbed. Disturbances like crushing and coagulation happen more easily and much more frequently via butterfly used by the lab. That's what caused the temporary spike in potassium as shown in my initial lab blood test; 2) you won't know if the high value is for real or other cause as mine was, nor can you get needed treatment without medical professional intervention, ad 3) this introduced a new topic for me--to butterfly or IV. Whatever, please don't ignore high potassium. (As a side note, I compared the lab blood test results to the ER test results to see if lab error could explain my high platelet level and alas it does not, darn it, thus my ET journey continues)

[hunter5582]

Pseudohyperkalemia is a topic that comes up on this forum periodically. It can be an artifact associated with thrombocytosis and other issues. MPNs are rare disorders and most doctors would not know about the link between MPNs and a false-high read of potassium. Had you potassium levels really been high, it would have been an emergency. Unfortunately, a lot more drama than was necessary. Another good reason to make sure to have a MPN Specialist on your care team.

acutecaretesting.org/en/art....

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

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

[Mishie14 in reply to hunter5582]

absolutely right on. You have to respond accordingly until the cause is proven otherwise. Thank you for additional references. Very helpful.

[Whitehair51]

I saw an NIH article on high potassium levels and ET. They said it may be due to blood sample clots squeezing blood cells and expelling potassium.

[Mishie14 in reply to Whitehair51]

Yes, and that is another example of red blood cell 'disturbance' that increases the possibility of increased potassium solely due to the sample. Also another example of how special we are.

[JojoWonder]

This same thing happened recently to my Dad. He was told he was at high risk of cardiac arrest due to a high potassium reading. Like yourself thankfully, it seems it was an anomaly in the blood test. I asked a Doctor friend about and she said that it can happen if a blood sample degrades slightly. I asked about the alarming use of words - high risk of cardiac arrest - and she said they treat every case seriously just in case. It’s important to get it checked out immediately.

I’m sorry for your stressful day x

[Mishie14 in reply to JojoWonder]

thank you for sharing. So glad your father was fine. It is a scary event. The only reaction, however, is to seek help because there are no symptoms other than a heart attack if the high potassium is in your blood stream or only the sample. Stay safe!

[strangeland]

I've had high potassium readings as well. I heard all those other possibilities during the two years my readings were high, including from my MPN specialist who thought the tourniquet used when they take blood was the "disturbance." But it was the Lisinopril I was taking, which has a side effect of raising potassium levels, and a change of meds lowered the levels. It took an endocrinologist to make that call.

Glad yours turned out to be an error, though!

[Mishie14 in reply to strangeland]

thank you for sharing and adding two more causes of red blood cell disturbances. This has turned out to be a common event. I am surprised it took a year of weekly lab tests before it happened to me. Stay safe!

[Arnoldthecat]

Hi This has happened to me twice following blood tests at my GP. At the last one i had a call from my GP saying i should contact haematology because my potassium levels were at a dangerous level and i was at risk of having a heart attack and it was life threatening. I had to go back to the surgery for an ECG, which was fine. My GP raised it as a critical incident with the hospital. The following day a haematology consultant contacted me explaining it was 'a storm in a test tube' how potassium reacts in a test tube if you have ET, not what is happening in the body and there was nothing to worry about. I was very relieved after having a sleepless night terrified i may have a heart attack. It goes to show the lack of understanding of this disease amongst GP'S. This happened while i was on the waiting list to see haematology following my referral.

[Mishie14 in reply to Arnoldthecat]

Thank you for sharing. It is a very scary event. I am glad it was a false alarm and that you received a timely explanation and apology. Stay safe!

[Andyf24]

Happened to me also...root cause was the phlebotomist using the wrong tubes when taking the sample, in UK should be Orange topped lithium lined I believe and this prevents the sample degrading. However good to know the response is handled seriously I'd rather that than it not be acted upon. My consultant gave a a few so I could take them with me...lol

[Mishie14 in reply to Andyf24]

Thank you for yet another source of red blood cell disturbance. The butterfly method administered by lab techs offers opportunities for error. It’s relatively easy, fast, painless and practical but subject to error that we MPNers are particularly sensitive to. I can see now why my ER doctor said he prefers IVs to draw blood to send for lab analysis vs have a lab tech come to his patients. The hospital lab I go to has quite a variety of colors and sizes of tubes that the tech picks from for my draws. I never paid attention to tubes before. Now I have a very good reason to. Stay safe.

[Exeter21]

thanks for great informative explanation. Mine was slightly higher & my doseage of interferon reduced. My next tests showed it was ok 👍

[Plavers]

Alarming when that ‘Get to emergencies NOW!’ Happens. I’ve had it, and then the embarrassment afterwards for taking up valuable time in A&E. Mine was down to error and possibly too many Bananas! I never eat a banana on blood test day anymore.

[Mishie14 in reply to Plavers]

Thanks for helping me smile. Good old bananas that I had been taught from childhood to eat because they taste good and are good for your heart! Not any longer.

[RyanCB]

I ran into a similar issue in the past 2 months. My PLT levels were very high and that alone raises potassium levels. Then to make things worse it jumped to over 6. What the phlebotomist identified was that during the previous draw the other phlebotomist had asked me to do the traditional “make a fist” request so that the vein in my arm would bulge up more. Well, the act of making the fist over and over breaks platelets and releases potassium….

It is ok to do that if necessary for a normal CBC if needed but I would not recommend it for CMP metabolic panel testing. After I had a retest without making a fist my potassium level came way down.

Here is a reference - pubmed.ncbi.nlm.nih.gov/208...

[Mishie14 in reply to RyanCB]

Excellent information sharing. The 'make a fist' is very common to hear at the lab I go to. I have wondered about it because my veins are easy to tap into. You are so right about feeling guilt. I was a nervous wreck over this. The ER was very busy. When I finally got to see a doctor in the treatment area, it was packed with obviously sick and hurting patients. Here I come walking in feeling fine other than nerves. A fantastic nurse was my guide and stayed with me, got me settled with an IV and quickly took blood and took it to be analyzed. She explained what happened and why as was repeated by the doctor. He said he was happy to see a patient whose problem could be solved and so easily by repeating a blood test. I left feeling so happy to be OK and then again feeling bad about the many others in ER who were not. As someone commented, so much drama around this event.

[Uzza]

We get this from time....you have to have plasma potassium preferably. As Hunter says, it happens with us.

Cheers

Uz