International MPN News, Science & Opinion

How I got my ET diagnosis

by Ellen Jacquart

High potassium.  That’s how I found out I had essential thrombocythemia. 

While high potassium isn’t necessarily a symptom of ET, it’s how I was finally diagnosed in September 2010.  Here’s the strange story.

I’d been complaining of fatigue and migraine auras for a few years, and blood work in 2008 had shown my potassium to be elevated.  Not enough for my doctor to take action, but enough to have it retested 6 months later to see if it was fluke.  The next time I was tested, it was even higher.  Still no panic, just a suggestion it be retested in a few months.  This testing went on for two years, at which point my potassium was 6.8, which is extremely elevated.  Still, there was no action from my doctor other than to have my potassium levels retested every so often.  Fortunately, that doctor left the practice in 2010 and I saw a new doctor the next time I came in.  She looked over my chart and had the nurse make an appointment for me with a kidney specialist the next day, letting me know this was important and potentially serious.

The kidney specialist was great.  He agreed there must be something wrong and set up many tests to figure things out.  I told him I’d get the tests run at my regular doctor’s office, since it was more convenient for me.  No, no, he said, explaining that these were advanced tests that could only be run at the hospital, and I needed to head there the very next day.  He also put me on a low potassium diet.  Anyone out there ever been on a low potassium diet?  No coffee or tea!!  No baked beans, no salsa, no bananas, no avocadoes – the list went on and on.  But I certainly didn’t want to add any more potassium to my overflowing cells, so I went along with it (and lost four pounds in 3 weeks!).

When I went back to get test results 3 weeks later, the kidney specialist kept flipping through the chart and saying “hmmmm”.  It didn’t sound good.  And then he told me that my potassium was actually a little bit low, not high.  There were no abnormal results from the tests for kidney function.  But – there were high platelets.  Very high platelets – 1,920.  He told me this was potentially a serious problem, and that I needed to get in to see a hematologist about it immediately.

I think he even ventured a guess that ET might be the answer, but at that stage ‘essential thrombocythemia’ was just a string of syllables that didn’t stick in my brain.  I did go to see a wonderful hem/oncologist who told me it probably was ET, gave me a bone marrow biopsy to be sure (by the time of the biopsy, my platelets were at an all-time high of 2,230!), and has provided me with great care for the last year.

However, there was still a mystery.  Why was my potassium consistently so high for two years, and then suddenly low?  The kidney specialist realized that all the high values came from my local doctor, and the low value came from the hospital.  He had me get a blood draw at both offices on the same morning, and sure enough, I was 6.1 at my local doctor and 4.0 at the hospital.  All the samples collected in both places are run through the same machine at the hospital, so the only difference was that there was a lag time of a few hours between when they took my blood at the local doctor and when they drove it over to the hospital to be tested.  He hypothesized that the lag time allowed my zillions of platelets to start breaking down in the sample and releasing potassium into the mix.  So even though it was just an artifact, and it took a couple years to figure out, the high potassium tests eventually did lead to my diagnosis with ET.

Recently I found a disturbing postscript to this story.  I got tired of changing doctors every year in my former family practice so I found myself a new general physician who promised she planned to stick around.  She suggested I go back to my old family practice and get any records for past CBCs so we could establish when the rise in platelets started.  I honestly didn’t remember ever having a CBC done before 2010, but I went and asked.  It turned out there had been two CBCs, one with normal platelets in 2004 and one with elevated platelets (485) in 2006.  Maybe the doctor put that down to some kind of inflammation or infection and dismissed it, but no one told me I had high platelets and there was no follow up to check them again.

Fortunately I was diagnosed with ET and put on hydrea before having a heart attack or stroke, but the moral of this story is ALWAYS get a copy of the results from a blood draw for your files and ask questions when you see abnormal values.

Take me back to the Contents

© Ellen Jacquart and MPNforum.com, 2011. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Ellen Jacquart and MPNforum.com with appropriate and specific direction to the original content.

Comments on: "How I got my ET diagnosis" (1)

  1. Pam Coopersmith said:

    Quite a story, reminds us all to be diligent and pay attention to numbers and tests. So glad they solved the mystery for you. I have ET and was dx’ed after lots of aura migraines and hemming and hawing on the part of doctors. I I knew there was something wrong and kept insisting….it took awhile but it’s good to know I wasn’t crazy!

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