So disappointed!: Good morning all. After the... - MPN Voice

MPN Voice

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So disappointed!

Cokopops profile image
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Good morning all. After the hospital lost my blood last week and having to go back for another blood test yesterday, the results were discouraging. E T (want to send him home 😉), Jak 2, platelets we’re slowly going down for the last two years being on Hydroxy (500 for 4 days and 1000 for 3 days. But yesterday’s results showed that platelets are going up instead of down. Why would this suddenly happen? I’ve got another appointment with haematologist next week, but meanwhile maybe one of you had same kind of experience and can tell me what to expect? Thank you for reading my post. Keep well

Rolande

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Cokopops
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hunter5582 profile image
hunter5582

There is too little information to really answer your question. There are many reasons why platelet levels vary. it is normal for platelets to change by as much as 100K in a single day based on what is going on in your body. Many things can affect PLTs, including inflammation, infection, injury, bleeding, iron deficiency, etc. We should never make any decisions based on a single lab read. It is always the trend over time that matters. A progressive change over time that was not explained by any of the known causes of reactive thrombocytosis would be something worth investigating. It is also worth noting that there is no linear relationship between platelet levels and risk of thrombosis.

Suggest you review all of the issues and your questions with your care team. You may want to consult with a MPN Specialist if you do not already have one on your care team.

Please do let us know how you get on.

Cokopops profile image
Cokopops in reply to hunter5582

Thank you Hunter. I feel relieved to read your reply. I’ll let you know how it goes with appointment. Have a good week end.

saltmarsh profile image
saltmarsh

Hunter's reply is spot on. I developed an intestinal infection a couple of years ago and my platelets went through the roof. It doesn't take much to affect that number. Hopefully you will find this was caused by a minor wrinkle in your system and will pass. Best wishes

Janis12 profile image
Janis12

Hi, I am having the same experience, platelets going down over a couple of years on the same dosage as yourself and over the last few months are gradually climbing up...yikes!! Now increasing hydroxy after a very poor telephone consultation with a doctor I could hardly understand not helped by his crackling head set. I demanded to be booked in with the MPN specialist so I could make a more informed decision on my meds, he agreed but I am having to wait two months for the pleasure!! Good luck with your journey.

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