High platelet count

[Jdb123]

Hello,

I am 43 years old and recently had a CBC that showed a high platelet count of 648. Everything else was in normal range, red, white, hemoglobin. I have had some stomach issues from time to time, that my wife keeps telling me is from this stressful COVID situation and my job. I have to see a hematologists in one week from now and am very nervous, mostly from google. Has anyone else been through something similar? Thanks so much!

[mhos61]

Hi Jdb123.

Welcome to our lovely supportive forum.

It’s difficult when you’re in that state of limbo , most of us here have been there, so totally understand. You want answers, and so turn to google. The trouble with google is there is so much inaccurate or, historically irrelevant literature out there.

I was diagnosed with ET four years ago. My platelets were found to be raised (502) on a random blood test. A further repeat test and referral to haematology took around four/five months, so I overdosed on google during that time, not good! But I had a fair idea of what my diagnosis might be by the time I saw the haematologist.

The cause of Thrombocytosis (raised platelets) can be ‘Primary’ (caused by a mutation) or ‘Secondary’ to something else such as infection, inflammation etc. Your haematologist is the only person who can determine this.

Take a look on ‘MPN Voice’, where there is accurate, professional and more importantly, up to date information on MPNs. However, it’s important to remember you have not been diagnosed yet.

Keep us updated and good luck

Mary

[Ebot]

Hi there. Keep away from Dr Google! It has much to answer for in terms of anxiety induced ailments!

As mhos61 says the most reliable source of info about MPNs is MPNVoice. So definitely Google that!

However, although your platelets are elevated you don’t yet have a diagnosis. And the good news is all your other counts are normal. The anxiety you are experiencing right now will be familiar to just about everyone on this Forum. And it can have a very real physical effect aside from the mental turmoil.

Hang on in there. It’s only a week until you see the haematologist. Definitely go armed with a list of questions. Putting that list together is a useful focus right now. Also take someone with you to the appointment to act as an ‘extra ear‘.

Wishing all the best. Let us know how you get on.

[hunter5582]

I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. Still alive and kicking at age 65. Have had and continue to have a good life despite the MPN. AT this point, you do not know whether the thrombocytosis is primary or secondary. It is possible that if the stomach issues involve significant inflammation or bleeding that this could trigger the thrombocytosis. Your care team will help you sort all of this out. If you do need care for a MPN, it is a good idea to consult with a hematologist with expertise in MPNs that you need. Not all hematologists have the KSAs to provide optimal care. Here is a list of MPN expert docs mpnforum.com/list-hem./ .

No matter what, know that this can be dealt with. Hang in there until you have answers.

[mamajen10]

I could have written this post myself. Random blood test shows my platelets elevated, 536, for what I just found out is 2 years. All other levels within normal range. My hematologist appt is in 1 week. Dr. Google has got me good and scared.

The unknown and the waiting has my anxiety in overdrive.

[Nessac76574 in reply to mamajen10]

I’m in the same boat! Platelets are 537 and I have definitely scared the crap out of myself with Google!

[Nessac76574]

Any updates? I'm mostly trying to distract myself from the anxiety I have waiting for all of the test results to come back!

[Jdb123 in reply to Nessac76574]

I just got confirmation that I have the JAK2 mutation. I am scared, but the hematologists said I should live a full life. I am feeling very down.

[Jdb123]

With my new news of having the JAK2 mutation I have so many questions. I am 43 and my last count was 617. When I had my appointment with my hematologists he said all I have to do is take a low dose aspirin once a day and that’s all. I have to go in October to look at my counts again. Will my numbers get higher over time, or will they stay the same? The JAK2 mutation I have is primary. I need advice on what I need to expect, or things to look out for. Any advice would be greatly appreciated. I just hope my life will be normal, and I don’t want to have JAK2 always in the back of my mind. Thanks all!