Overwhelmed- diagnosed with Thrombocytosis & Leukocytosis

Have you been tested for leukemia ? Are your white blood cells high? Just curious. I have chronic lymphocytic leukemia (CLL) and lupus.

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?

Hi Lauren,
When I was first diagnosed about 6 months ago, my new heme doc said not to look it up online at all. But, if I did, realize that most of what I would read did not apply to me. I think that’s still pretty good advice.

As hard as it is to wait, once your doctor starts the testing procedures, you will start to get answers. This is a good and safe venue to ask questions and to learn from others who have been there many more years before us.

In the meantime, I do hope you take care of yourself, and watch your blood pressure. We are all here even if you just need to vent 🙂

Sherry

Hi Lauren, im glad you commented. I am going through the same thing it sounds like. I’m 38, and have had high platelets for a couple yrs now. My doc attributed it to Covid when we first noticed it because I had just had it a few weeks earlier. Fast forward to 6 months ago, and I went in for another annual physical and they were still high. Now my white blood cells have gone up out of the normal range as well. I met with the hematologist last week and he really didn’t seem too concerned. He said “ well, you either have Leukemia or you don’t.” I didn’t like that comment very much. We did a more comprehensive blood panel and he said the people that looked at my blood seemed to think the high wbc was coming from somewhere other than my marrow. They decided to do another blood test to check for the various gene mutations, and I fully anticipate there will be a bone marrow biopsy following that.
The weird thing is I feel fine. I did have some heart palpitations/ flutter about a month ago that lasted for about 2 weeks during the night. Not sure if they are related because I haven’t felt them in a couple weeks. I’m very active and try to eat reasonably well. I’ve never had anything I’ve even had to go to the dr for, so this is coming as a shock. I’m glad we have someone to connect with here that may be going through the same thing. Please keep me updated. Can I ask where your platelet and wbc levels are? Just curious to how they compare. All the best.

Sherry, did you say you were diagnosed with ET? Curious if you had high WBC as well or just platelets?

High platelets only, hovered in the 580’s. RBC and WBC were (and have stayed) in the normal range.

And yes, ET w/JAK2.

I haven’t been tested for anything yet. My white blood cells weren’t high.

My platelets were 461 10*3/uL— whatever that means. They were 459 in 2019 so it’s staying about the same but still probably not good that they have been high for so long. I didn’t have high wbc counts. They were on the highest end of normal though. Slightly elevated Bilirubin and globulin— not sure what those even are. My Neutrophils are also high. I think 6.8 (if that means anything to you). And RBC in my urine.
Sorry, I really don’t understand any of it enough.

Thanks so much for the nice replys! I appreciate all of your time and input more than you know!

Does anyone have experience with what’s going on with my arm? Does it mean anything or am I just turning nothing into something because I’m paranoid.

The red spots— what I assume is blood— isn’t going away. If anything, it’s darker. Maybe the person who drew my blood messed up? But it didn’t hurt more than usual and it’s been 10 days now…