High platelet count

Posted by carlsonte @carlsonte, Feb 27, 2019

My son, who is 46, has an elevated platelet count of 700,000 to 870,000. It has went on for over four years and is only being monitored. Is there more testing other than blood tests that can be done? What are the concerns a person should have with this elevated count?

Hi! My regular dr wasn't worried when my platelets were high for 4 years, just told me to take a baby aspirin every day. My counts went 485/520/540/585/618/ and now have been 638 for a year. I went maybe once a year to a hematologist/oncologist anyway for high iron/hereditary hemochromatosis so I asked him what he thought. He decided it was time to run some genetic mutation tests and also some tests to rule out conditions like rheumatoid arthritis. FYI – make sure your dr gets prior auth for these tests bc mine did not and I owed over $2k for them… All these tests came back negative, which was a relief but my platelets continued to rise so he ordered a bone marrow biopsy this January. The results showed abnormal platelets but no fibrosis or cancer. The radiologist who examined the sample asked my hemo if he'd done mutation tests and it turns out he forgot one! She ran it, and it came back positive for CALR mutation type 1. It was crushing bc I had done all my Google research and I thought it was a death sentence. But I saw an MPN specialist and he put my mind at ease, and actually told me NOT to take a daily aspirin. He said the gym/lifting weights is my medicine for now and he would go off my symptoms (which I have minimal symptoms). Anyway, yes – If I were you I would seek out a local hemotologist/oncologist (don't freak out about the oncology part) and be your own advocate – tell them you want tests run to rule out things (but get prior auth first!!!) It could be that your periods are so heavy that you've become anemic and your platelets can react to that – that would be a good outcome! Good luck and prayers to you!

REPLY
@snacker1206

Hi! My regular dr wasn't worried when my platelets were high for 4 years, just told me to take a baby aspirin every day. My counts went 485/520/540/585/618/ and now have been 638 for a year. I went maybe once a year to a hematologist/oncologist anyway for high iron/hereditary hemochromatosis so I asked him what he thought. He decided it was time to run some genetic mutation tests and also some tests to rule out conditions like rheumatoid arthritis. FYI – make sure your dr gets prior auth for these tests bc mine did not and I owed over $2k for them… All these tests came back negative, which was a relief but my platelets continued to rise so he ordered a bone marrow biopsy this January. The results showed abnormal platelets but no fibrosis or cancer. The radiologist who examined the sample asked my hemo if he'd done mutation tests and it turns out he forgot one! She ran it, and it came back positive for CALR mutation type 1. It was crushing bc I had done all my Google research and I thought it was a death sentence. But I saw an MPN specialist and he put my mind at ease, and actually told me NOT to take a daily aspirin. He said the gym/lifting weights is my medicine for now and he would go off my symptoms (which I have minimal symptoms). Anyway, yes – If I were you I would seek out a local hemotologist/oncologist (don't freak out about the oncology part) and be your own advocate – tell them you want tests run to rule out things (but get prior auth first!!!) It could be that your periods are so heavy that you've become anemic and your platelets can react to that – that would be a good outcome! Good luck and prayers to you!

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Thank you @snacker1206 for your great reply to @monarenae regarding high platelet levels. Sharing a similar experience, your response filled with factual information and positivity will give her some encouragement. That’s exactly what Connect is all about…members “connecting” with members to bring hope and encouragement.

There’s a cool trick on Connect for making sure an intended member receives a notice for a posting. Next time hit Reply in the member’s comment box or add the @ in front of their name. That will insure the message was directed right to the person you wished to answer. ☺️

It looks like you’re really doing well after your diagnosis. I’m happy you found a MPN specialist who is the right fit for you!! It’s a relief when you find someone who isn’t dismissive and works with you for a common goal…your good health! Thanks again and continued good health to you! Lori.

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