High platelet count: What does this mean?

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?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

So I have a diagnosis of high platelet count. So my oncologist ordered a bone marrow biopsy. Yes it was elevated there also. At what point will the doctors address this issue? Please note that I am a 2 time cancer survivor.

REPLY
@candicemitchell320

So I have a diagnosis of high platelet count. So my oncologist ordered a bone marrow biopsy. Yes it was elevated there also. At what point will the doctors address this issue? Please note that I am a 2 time cancer survivor.

Jump to this post

Hi @candicemitchell320 and welcome to Mayo Clinic Connect. This is a wonderful forum where people help each other through shared experiences. As you can see there are a number of other members who also have high platelets for one reason or another. However we are not medical professionals so we can’t diagnose conditions.

How high is your platelet count? Have you had this condition long or has it developed recently?

You had a bone marrow biopsy which also showed high platelets. The main goal of the BMBX is to determine what is causing the high platelet count by going to the source of blood production...the bone marrow.

Did your oncologist/hematologist review the results with you and give a diagnosis? If not, you need some clarification and answers. So call the doctor’s office and speak to the nurse practitioner or set up a consultation. After going through all of that you have a right to know for some peace of mind and a plan of action.

I’m sure there will be other members on this forum who can provide you with some personal insights...in the meantime I’ve posted some information from the Mayo Clinic website on high platelets.

https://www.mayoclinic.org/diseases-conditions/thrombocytosis/diagnosis-treatment/drc-20378319
REPLY
@candicemitchell320

So I have a diagnosis of high platelet count. So my oncologist ordered a bone marrow biopsy. Yes it was elevated there also. At what point will the doctors address this issue? Please note that I am a 2 time cancer survivor.

Jump to this post

@candicemitchell320
And hello here from another Volunteer Mentor. Lori has given you some excellent information and direction. All I can add is reading in your past that your oncologist ordered a bone marrow biopsy in response to the high platelet count, so he/she is already addressing it. Just follow up as Lori suggested and keep asking questions and getting the answers you want and need. We are all about self advocacy and you are already on that path. Welcome to Connect. I hope that you come back and let us know how you are doing. Peace, Nancy.

REPLY
@mjpm2406

I had a platelet count of 847,000 a d was told I had ET and was told to take a 81mg tablet. I thought this Hemotologist is an idiot and went to Sloan. They performed a bone marrow aspiration and biopsy along with a molecular panel. The results indicated JAK2 and SRSF2 gene mutations. The final diagnosis is MDS/MPN overlap with Thrombocytosis and MF. The 81mg aspirin doesn't work in my humble opinion. Get the tests done by a cancer center.

Jump to this post

My ET diagnosis was initially determined at GWUniversity Cancer Center and Sloan Kettering. Advice for me included multiple bloodwork a few times a year and taking a daily 81mg aspirin, serving as a blood thinner. Taking only a 1 81mg aspirin is fantastic! I feel extremely fortunate to only needing this single dose, as are many fellow ET patients.
Clearly, not every treatment plan works for everybody. As you commit to learning more information about ET, you would have a greater understanding of customized treatment plans. Your genetic concerns that compound a diagnosis of ET is different for1/2 of patients with ET. I’ve been fortunate . Lucky for you that your medical team is treating you with a treatment plan that addresses your diagnosis. Good luck!

REPLY

Thanks for posting your experience. I need all the help I can find to deal with my condition of Essential Thyrombocythemia and a high platelet count now declining with the use of Hydroxyurea. Mayo does a great service to others by running this blog.

REPLY

I too am taking Hydrea 7 days a week for ET and MPN. I was taking it 6 days a week and my hemetologist recentley increased it.. after my covid vaccines. I still have fatigue but you learn to determine how much you can do in a day because every day is different. I have more energy in the morning so rest is important in the afternoon. Listen to your body and let it be your guide as to how your day will go. God bless and stay safe

REPLY

I've had rising platelets for about 4 years (don't have my blood work from prior to that). They've gone from 417, 427, 396, 477, 468, 506. I realize that's not very high compared to a lot of people on here, but I also have a sister who had non hodgkin's lymphoma and a nephew (brother's son) who had leukemia (both blood cancers), so it does worry me a bit. I've had heavy menstrual bleeding for several years and my research shows that ET can cause heavy menstrual bleeding. My doctor said my platelets are nothing to worry about, but reading other posts and my own personal prior experience, I know that you have to push the doctor's sometimes. Any advice would be greatly appreciated.

REPLY

Hi @monarenae Welcome to Mayo Clinic Connect! In this community based forum, we’re not medical professionals so we can’t diagnose health problems or prescribe treatments. We’re members just like you who share personal experiences and insights to help find answers, give suggestions and offer encouragement.

It’s understandable to be concerned about your rising platelet level considering the family history of blood cancers. It’s always in the back of our minds anytime something unusual show up in our blood tests.

Did your doctor say why your high platelet count is nothing to worry about? At 506, while not inordinately high, it’s well above the normal high limit of 450. You do have a trend with the past 3 blood tests of continuing to rise.
What are your other CBC blood test numbers in regard to your total red/white count, etc.?

You’re right in that we do need to be our own advocates for health care. If this were me I’d be more assertive in having some follow up blood work done just to give some peace of mind and to make sure you’re not dealing with ET. As you’ve been reading, high platelets can cause complications with either clotting or interfering with clotting. So you’d like to know if this is an underlying issue you need to treat. If your current physician won’t comply then it’s time for another doctor. 😉

I’ve posted 2 informative Mayo Clinic sites below and also what tests are used to help diagnose and treat high platelets.

May I ask how you found Mayo Clinic Connect? We’re happy you’re a member in our family and would like to follow your experiences. Will you let us know how your bloodwork turns out? You’ll find a very supportive community and your continued sharing will help others.
Wishing you all the best! Lori

Samples of your blood will be checked for:
The number of platelets
The size of your platelets
Specific genetic flaws, such as the JAK2, CALR or MPL gene mutation
Iron levels
Markers of inflammation

Depending on the outcome of the bloodwork a bone marrow biopsy would be the next step.

https://www.mayoclinic.org/diseases-conditions/thrombocytosis/symptoms-causes/syc-20378315https://www.mayoclinic.org/diseases-conditions/essential-thrombocythemia/diagnosis-treatment/drc-20361131
REPLY

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!

Jump to this post

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.

REPLY
Please sign in or register to post a reply.