← Return to Overwhelmed- diagnosed with Thrombocytosis & Leukocytosis

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@loribmt

Welcome to @laurenashleyy. My daughter is just a couple years older than you are and I can tell you with certainty that you’ll feel so much better sharing your concerns with your mom and dad. Parents will always worry…it comes with the territory. But they are also good sounding boards when something feels overwhelming. ☺️ However, until you check in with mum and dad, you just gained a whole new family here in Connect.

Looking online when you’ve been told you have a “condition” is stressful and often leads you down a rabbit hole of information that won’t even apply to you so I’m happy you found us. We have a number of members in our forum who have ET, (Essential Thrombocythemia), the condition of elevated platelets. It can be helpful and encouraging to know you’re not alone with a diagnosis.

Your history of elevated platelets is a bit concerning because it can lead to some more serious health issues such as stroke or blood clots. No matter how well we take care of ourselves, sometimes there can just be a glitch in the bone marrow which is where blood cells are formed.
Your new doctor is a hematologist, who specializes in blood disorders. They may have more labs run to to check for a possible mutation which might be the cause of your platelets not having a shutoff switch. This mutation happens randomly, it’s not inherited and can trick the body into making surplus cells…either red, white or platlets.
I know it all sounds scary but there’s no need to panic. If needed, there are medications which can help get your numbers back under control, along with the possibilty of low dose aspirin or blood thinners to keep platelets from sticking together. But finding the cause will be the first step to unraveling this mystery for you. In the meantime, let’s introduce you to some of our members with ET in these converstions:

~Essential Thrombocythemia: Looking for information and support
https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
With members: @eileen11108 @bj87 @shenriq @claire39 @cweible19782006 @1995victoria @tokyolin and many more…
~~~
~Essential Thrombocytosis symptoms https://connect.mayoclinic.org/discussion/essential-thrombocytosis-symptoms/
With @lynn22 @edgy @sandy1959

You mentioned you have high blood pressure. Are you currently taking medication for this?

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Replies to "Welcome to @laurenashleyy. My daughter is just a couple years older than you are and I..."

I am on medicine for my blood pressure. But it still tends to be high sometimes, especially when I’m stressed

This is good information. I too have this diagnosis. I am glad to hear you have a relationship with a hematologist. I had a bone marrow biopsy that confirmed the issue (if you have to experience this absolutely request to be put to sleep). I take Hydroxyurea daily (chemo drug) to control the production of platelets and aspirin daily to reduce clotting. It has been four years and mine is 'controlled'. I understand this regimen is for the rest of my days and could still live a long life. Adjusting to the drug wasn't like a chemo treatment - no side effect of hair loss, etc. I get tired like you say but try to do things early in my day. I get to the point of clumsiness (yes, bruise easily) or leg aches and know it is time to take a break in the day. Have learned to love my naps (with my little terrier). He leads the way some days. LOL