Raised platelets

[Fordfiesta2009]

My platelets have been slightly high since 2012, they were sitting at 550, they rose 4 months ago again and are now sitting at 615, l am seeing a haematologist to rule out a secondary illness and at the moment we believe it maybe is essential thrombocytopenia, l am worried and feel l don’t know much about this, l have also read when ur platelets are high over a long period and then get a second rise within 6 months then there is a high possibility that you will be diagnosed with cancer within 6 months, sorry l know lm proberly being irrational but lm just really worried, any advice would be appreciated

Thanks

Billie jo

X

[Fordfiesta2009]

Thrombocytopenia sorry predictive text

[Deeg1968]

I feel for you! I'm going through the same thing. Elevated, but not terrible, platelets for 10 years, crazy symptoms, a hysterectomy four years ago.... I found out recently that my GP had written "Essential Thrombocythemia" in my chart since at least 2012. I just went to the hemotolgist last week and got the test results back. I have no idea what they mean, but I don't think it is leukemia. He also didn't. I see him again in a week and a half, so now I just wait... again. Anyway, to shorten up a long story, just want to say, hang in there! I'm waiting to get the results interpreted. Lots of borderline stuff, probably anemic, a few highs and lows, but none crazy high or low. Heavy sigh. As I said, I feel for you!!

[Fordfiesta2009 in reply to Deeg1968]

Thanks so much, it’s just scary when u don’t know but thanks for the advice, you feel better when you can talk to people who have been through it

[Ebot]

Raised platelets could be an indicator of Essential Thrombocythemia. Thrombocytopenia refers to an abnormally low platelet count. (Happy to be corrected here!) Myeloproliferative diseases of which ET is one use to be called just that - MPDs - but the World Health Organisation reclassified them as ‘neoplasms’ - MPNs. Hence the fact that technically they are now regarded as cancers. BUT don’t be alarmed. They are very slow growing blood cancers and should not be confused with acute ‘Big C’ diagnoses. The important thing is that the MPN is diagnosed and addressed. Raised platelets can increase the risk of a thrombotic episode which is why most of us take aspirin or something similar and may also start drug treatment to lower the platelet count (mine rose to 1700 before I started on drug intervention.) The good thing is you are being monitored right now. You have a clinician on the case. And hopefully you will have some definitive answers very soon. Please try and relax. All the best.

[Lemon123]

Hi Billie Jo, and welcome to this very friendly and helpful forum. I'm sorry to read your news. I was diagnosed with ET in May this year, and all sorts of thoughts raced round inside my head. It seems my platelets had been high for 15 years, but none of my Drs noticed, until we had a new GP at the surgery. I found the best thing is to talk to your medical team, I write my questions down so I don't forget them. I'm JAK 2 positive, and had lots of abbreviations and numbers on my blood results, so I asked for an explanation of them all. Being informed really helped me understand. My platelets are hovering around 600 at the moment, but I just take a baby aspirin daily, keep well hydrated and see my Haematology team regularly. Hearing cancer is a scary word, and our MPNs are rare, so finding good information I found really helpful, and everyone here knows how it feels and helps by sharing their experiences. I'm not sure which country you're in, but I found Macmillan and Bloodwise, along with Cancer Research, websites have information and you can request their booklets too. I'm in the UK.

I hope things become clearer for you soon, and you'll be given good information about what's going on. Do let us know. Every good wish x

[Fordfiesta2009 in reply to Lemon123]

Thank you for all your advice, l appreciate all these answers and knowing that you are not alone in this x

[Chuck309]

I’m similar to Lemon 123, my platelets have been in the 600s for over 20 years - just on baby aspirin and see my Hemo every 3-4 months. Lots of side effects but you get used to them. I know the anxiety feeling, always thinking what’s next.

[Fordfiesta2009 in reply to Chuck309]

Thanks, it really helps knowing that other people have been through this

[WileyFrench]

I was diagnosed with ET last year and have been taking hydroxyurea since July of this year to bring platelet numbers now. Like you, I was really anxious and scared at first but this forum helped a lot - hearing from other people who have MPNs and seeing that they carry on, take meds if needed, and generally live a pretty normal life. It’s the “cancer” word that’s freaky, but as others have said, it’s very slow growing, and the fact that you’re being monitored now is a good thing. I honestly try to stay the heck off the Internet about it (other than this forum) because the info is so conflicting, the studies are limiting and can’t be compared - basically the info is not helpful. But the people on this forum are!

[Melt321]

Hi! I am 39 and had never had a PCP. I’ve been having trouble sleeping so I decided that I should get established with a family doctor to get my Insomnia under control. Doing so 2 months ago they asked if they could run a CBC and I agreed. Got a call back that all labs were in normal range except from my platelets. They were 504 and I should be retested in 2 months. I went back for another CBC last week with same results except my platelets had rose to 531): I have an appointment with a hematologist next week and I am so worried as well. Any advise for me would be greatly appreciated! Thank you!