1. < Blood Cancers & Disorders

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.

Mentor
Lori, Volunteer Mentor | @loribmt | Jul 19, 2023
In reply to @mro "Hi Lori, I appreciate all your comments on these different feeds. You are such a big..." + (show)
@mro

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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Hi @mro. I’m going to send you a PM. ☺️

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Moderator
Colleen Young, Connect Director | @colleenyoung | Aug 2, 2023
In reply to @laurenashleyy "I haven’t been tested for anything yet. My white blood cells weren’t high." + (show)
@laurenashleyy

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

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Hi Lauren, I wanted to check in with you. I believe you may have seen the specialist now. Did you see a hematologist? What did you find out? Do you have a treatment plan?

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Mentor
Lori, Volunteer Mentor | @loribmt | Aug 9, 2023
In reply to @laurenashleyy "I feel so much better! Thank you! So basically I am just being paranoid for nothing...." + (show)
@laurenashleyy

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!

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Hi @laurenashleyy Just wanted to pop in to see how you and your mom are doing? I know you had an appointment with a new specialist have you heard anything?

And how about your mom? Has she been able to find any answers to her symptoms?

REPLY
rsesker | @rsesker | Jan 27 3:47pm
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?

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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

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 27 5:25pm
In reply to @rsesker "This is good information. I too have this diagnosis. I am glad to hear you have..." + (show)
@rsesker

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

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Welcome to Connect, @rsesker. Aw, I love that your little terrier is your snuggler during naps. Pets have a way of calming us, don’t they?
It’s wonderful to hear that you’re doing well with the HU. It is a very and reliable treatment for some blood disorders. Sounds like you have a good balance with the medication and it’s doing the job for you.
I hear you about bone marrow biopsies. I’ve had 13 of those…3 without sedation and 10 with! That’s the only way to fly! 😅
What led you to getting a diagnosis? Were you having symptoms or was this condition found during a routine physcial?

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