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← Return to ET: untreated elevated platelets for over 13 years
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ET: untreated elevated platelets for over 13 years
Blood Cancers & Disorders | Last Active: Mar 26 11:22am | Replies (30)Comment receiving replies
First of all, you may want to consider a hematologist/oncologist for help with this. I'm a bit older than you (71) and had gradually increasing elevated platelets for at least 10 years before being diagnosed with ET. My main symptom when the numbers got higher (400 or so) was an increasing number of migraine headaches. I hit menopause at age 53 and at that point got a migraine about once a year. Starting in June, 2022, I noticed more frequent migraines and eventually they occurred anywhere from every couple of days to once a month. After a bout of food poisoning that never resolved, my PCP ordered blood tests to see if anything else was going on, noticed my high platelets and referred me to a hematologist/oncologist. He immediately suspected ET and the diagnosis was confirmed via bone marrow biopsy on 11/1/2023. I started Hydroxyurea short thereafter and never had another migraine. And, my platelets dropped from 792 to 168 as of my last blood test two weeks ago and I continue on HU along with a low-dose aspirin daily.
Replies to "First of all, you may want to consider a hematologist/oncologist for help with this. I'm a..."
@debhammel whether the new provider was a hematologist/oncologist was the first thing that I checked! I also let them know that I was seen by one of their PA’s a couple of years ago and didn’t return because I had a bad experience. They spoke with the provider who focuses on hematology patients specifically and she wanted to see me herself and evaluate me at this upcoming appointment. I also brought up whether or not she is experienced in correctly diagnosing MPN’s, ET, and triple neg ET, and they assured me that she was. And I definitely checked into her credentials myself lol. So yay, I’m glad those were the right thing to do!
And that is so crazy because chronic migraines are actually one of the very first symptoms that I got that made no sense whatsoever. They came out of nowhere and I saw a neurologist who told me to read “The Body Keeps the Score” because they wanted to use stress or anxiety and depression as the reason. I’ve had them since 2019, just a few a year, but then I had a “silent migraine” in 2021 and my ocular migraines got worse while “regular” non-aura migraines started to come on more frequently and I got caught in a rebound-migraine cycle for almost a year. They would last for 15-20 days straight and I just powered through until I couldn’t anymore. I tried EVERY migraine medication on the market to help with the pain, but I did not respond to any of them well, nor did they make my migraines go away. I currently still get migraines, and take Nurtec every other day to help prevent them, but it does not stop them whatsoever. The Nurtec does help with the pain sometimes because of this type of migraine medication, but other times it will not touch my migraines at all. And during this time, I believe my platelets were at their lowest 520k and up to 600k during the start of the all of this. I've unfortunately never seen a single blood test since my teenage years showing my platelets below 475k.
Thank you so much for this! I’m definitely going to bring this up
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@debhammel Migraines are awful! I did not have as many as you, but they came with blinding auras that always seemed to hit when I was teaching, and trying to see the board or a kid who raised a hand was just about impossible. Like you, the HU cleared those up, thank heavens! If I eat the really good dark chocolate, that will sometimes set one off, too.