Overwhelmed- diagnosed with Thrombocytosis & Leukocytosis

Posted by laurenashleyy @laurenashleyy, Jul 13, 2023

Feeling a bit overwhelmed and confused by a diagnosis today from my doctor. She called it Thrombocytosis & Leukocytosis, unspecified. She then referred me to a specialist because the problem was “too advanced for her expertise”.

It all sounded really scary and I was wondering if anyone could share any information or personal experience with these conditions?

It started 3 years ago when my blood work showed high platelets. The doctors couldn’t find a cause, so we decided not to worry about it.
Fast forward to today, and I’ve been told that my platelets are very high, much higher than they were a few years ago. I also have high leukocytes and blood in my urine.

I don’t really know what any of that means. I don’t have symptoms other than frequent headaches and feeling tired all the time— but everyone seems to say that so I didn’t think much of it. Still don’t.

The only weird thing…
I’ve always had issues with feeling cold, but this summer has become much worse & very odd.
I’ve been keeping my house and 77-78 degrees, which on paper sounds uncomfortable and too warm— but I’m still cold all the time. I sometimes wake up with teeth chattering chills but I don’t have a fever or feel sick otherwise.

Also, I bruise easily— always have. But my recent blood draw was completely painless and still caused a massive bruise and swelling (see photo attached). It’s painful now and looks awful.

Anyway, I know I should wait to meet with the specialist but the earliest appointment I could schedule is over 2 weeks from now and I’m stressing and googling— which I know is a bad idea.

Not sure if it’s relevant but I have high blood pressure. I’m not overweight and keep a relatively active lifestyle. Not the healthiest eater though. Plus, I’m not young anymore (36) but I have had high blood pressure for over 10 years. It’s genetics and stress. I’m on medicine, that helps somewhat.

Anyway, I was just looking for any information or experience with these conditions because I’m clueless. How serious is it? I’m not telling my parents yet because they already worry about me for no reason— so I don’t want to upset them. But I also don’t know who else to talk to about this… which is how I ended up here.

Thank you in advance for your time!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

laurenashleyy | @laurenashleyy | Jul 15, 2023

Sorry… one more question. My lab work says for platelets Normal range: 131 - 340 10*3/uL. But when I’m looking online is says up to 450,000 is normal.
Can some please clarify? I apologize if that’s a really dumb question

laurenashleyy | @laurenashleyy | Jul 15, 2023

In reply to @loribmt "Welcome to @laurenashleyy. My daughter is just a couple years older than you are and I..." + (show)

@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?

Jump to this post

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

Lori, Volunteer Mentor | @loribmt | Jul 16, 2023

In reply to @laurenashleyy "Thanks so much for the nice replys! I appreciate all of your time and input more..." + (show)

It’s not uncommon to have a little bruising after a blood draw. Occasionally. if there isn’t enough pressure applied or the bandage is removed too soon after the collection, the blood can continue to leak out from the vein and collect under the skin causing a much larger bruise.
It can take time for the body to break down the blood and fluids that accumulated in that area. As that happens the bruise turns different colors.
Within the first few days after getting a bruise, the area may become black, blue or purplish. About 5 to 10 days after getting a bruise, the area may turn greenish or yellowish.
During the final phase of healing, approximately 10 to 14 days after getting a bruise, the area will usually be brown in color. Eventually it just fades away.
I’ve had some experiences with blood draws and had a couple that look very similar to yours, so I’d hazard a guess that there wasn’t enough pressure applied under the bandage after the blood draw.
In your photo I can see it’s already turning greenish/yellow which fits the time frame for labs. The dots will take a little longer to completely fade but it looks like it’s following a natural progression for resorption of the blood in a bruise.

The next time you have a blood draw just let the phlebotomist know what you experience and ask for a pressure bandage. Instead of a bandaid with a little gauze tucked under, it will be more of a band of athletic wrap with a larger piece of gauze to put more pressure on the needle poke site. Just keep it on for 30 minutes and it should be fine. ☺️

laurenashleyy | @laurenashleyy | Jul 16, 2023

I feel so much better! Thank you! So basically I am just being paranoid for nothing. That’s a relief! Thanks so much for that detailed and helpful response. I really appreciate you!

laurenashleyy | @laurenashleyy | Jul 16, 2023

In reply to @mro "Hi Lauren, im glad you commented. I am going through the same thing it sounds like...." + (show)

I don’t know how to edit comments but I made a mistake on my last reply to you. My platelets are 561. I misread my lab work. Wishful thinking. So I guess they have actually went up significantly since 2019. 😩

Lori, Volunteer Mentor | @loribmt | Jul 16, 2023

In reply to @laurenashleyy "Sorry… one more question. My lab work says for platelets Normal range: 131 - 340 10*3/uL...." + (show)

Hi Lauren. Different labs can have their own parameters for testing. For example, my local lab lists
neutrophil range as 1.6 - 7.5
On my Mayo labs, it is 1.56 - 6.45

Platelets Local lab: 150 - 400 Thou/uL
Platelets Mayo: 157 - 371 Thou/uL

Your blood results will be based on the calibration of testing at the lab where taken. If it helps to understand a little more, the context of lab test results, “normal” does not mean usual, typical, or ordinary. Instead, “normal” refers to how these values line up on a graph and form a range. The word “normal” here means a “normal distribution”, or set, of lab values.
So try not to read too much into your blood tests. Single tests don’t always give the entire picture and all of the numbers have to be taken into account and into context. I hope this helps…and there are no dumb questions. ☺️ That’s how we learn, by questioning.

Lori, Volunteer Mentor | @loribmt | Jul 16, 2023

In reply to @laurenashleyy "I feel so much better! Thank you! So basically I am just being paranoid for nothing...." + (show)

I got a crash course in all of this blood cancer excitement when I had acute myeloid leukemia and a bone marrow transplant 4 years ago. I’ve learned not to panic about anything… ☺️

jerrysgirl3 | @jerrysgirl3 | Jul 17, 2023

In reply to @laurenashleyy "I haven’t been tested for anything yet. My white blood cells weren’t high." + (show)

Well that's good !

sregiani | @sregiani | Jul 18, 2023

In reply to @laurenashleyy "Sorry… one more question. My lab work says for platelets Normal range: 131 - 340 10*3/uL...." + (show)

Normal is a relative term. Best to talk w/your doc. Some sites drop the 3 zeros and show “10-3”. It’s just a math code.

mro | @mro | Jul 19, 2023

In reply to @loribmt "I got a crash course in all of this blood cancer excitement when I had acute..." + (show)

Hi Lori,

I appreciate all your comments on these different feeds. You are such a big help. Would it be possible to send you my recent blood work and maybe have you explain a little to me. I don’t feel like my hemo was very helpful, and I’ve had a hard time keeping my mind from stressing constantly about this.

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