new to elevated platelets: Hello everyone. I hope... - MPN Voice

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new to elevated platelets

amandaja88 profile image
22 Replies

Hello everyone. I hope this post finds you well. I am 30 years old and due to insurance issues I did not go to the doctor for a few years. I recently went 6 months ago and on one of my blood tests my platelets were 430 and then 6 months later my platelets were 544. The last blood test was approximately a month ago. My doctor re-ordered another CBC and I am awaiting the results. Should I be concerned about the blood count or should I just worry if it elevates to above 1000. Thank you for any response and help in advance. Have a great day!

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amandaja88
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22 Replies
MJL1977 profile image
MJL1977

My doctor sent me to a Hematologists when my platelets went from 420 to 500. The Hematologists ran tests for the JAK2 and CALR mutations. He identified the CALR flavor of ET. About 1 year later my level hit 1,000 and my blood showed traits of Von Willebrand. I started Hydroxyurea this week.

I suggest you get the JAK2 and CALR tests done ASAP. I wouldn’t wait.

amandaja88 profile image
amandaja88 in reply toMJL1977

Thank you for your reply. I'm sorry everything happened so quickly after that for you. I will make an appointment to speak with the doctor tomorrow.

socrates_8 profile image
socrates_8

Hey Amanda... :-)

Well, before you become to overly concerned, just tug back on those reins a tad, because... there is another possibility, and that might be that you have an infection of some description that might also be elevating your platelets?

Usually, a good Haematologist will first rule that out before worrying too much about a possible causal 'Driver' mutation like previously mentioned:

* JAK2

* CALR

* MPL

or even a 'Triple negative or Unclassifiable'

At the moment, your platelets don't seem to be too high, and really just above the normal range of: 150, - 450,

Anyways, best wishes with your results, but see a Haematologist rather than just your GP if things do continue this way.

Steve

(Sydney)

amandaja88 profile image
amandaja88 in reply tosocrates_8

Thank you. I'll see if my doctor can order those tests or what he suggests.

Ebot profile image
Ebot

What matters is the trend. Are your platelets trending upwards? Or is this a one off spike? So your doctor is right to keep repeating the blood tests. If your platelets continue to trend upwards then you most definitely don’t want to wait until they reach 1000 to do anything about it. And a good doctor would in any event (gently!) insist on further investigation. I had much the same experience and kept saying that my elevated platelets must be down to an infection or something. But after increasingly elevated counts over about three blood tests my doctor was pretty insistent this was investigated. And even if ET is confirmed it doesn’t mean that you’ll need any further intervention beyond perhaps daily aspirin.

in reply toEbot

If there is an infection, then a full blood count should be showing increased white cells.

Ebot profile image
Ebot in reply to

That’s true but platelets can be elevated temporarily for a number of reasons unrelated to ET. And one off counts can be misleading or unhelpful. I quite understand that if you are symptomless and otherwise young and healthy with relatively low elevations you might be reluctant to jump onto the MPN investigation bandwagon. Equally I wouldn’t want to avoid investigations to the point where I’d risk damaging my health. That’s why the trend matters as does a doctor’s advice.

in reply toEbot

Indeed but other postings implied that the platelets could be raised as a sign of infection. I was only pointing out that while that could happen, you would also expect to see raised white cells fighting an infection. Platelets always above normal for one or two tests, whether rising or statically high, should trigger an haematology referral - to an MPN specialist if possible.

Ebot profile image
Ebot in reply to

Yes, you’re right.

amandaja88 profile image
amandaja88 in reply to

My wbc is in the normal range.

in reply toamandaja88

It is unlikely that you have secondary thrombocytosis as a result of infection. This increases the likelihood that it is primary thrombocytosis (essential thrombocythaemia). If your platelets continue to be elevated, you should be seen by an haematologist/oncologist who specialises in Myeloproliferative Neoplasms

amandaja88 profile image
amandaja88 in reply to

I'll have to see which Hematologist specializes in that who is covered under my insurance. Thank you so very much for your reply and information.

amandaja88 profile image
amandaja88 in reply to

This is all so new to me so thank you so much for all the great information!

Anag profile image
Anag in reply to

My doctor a good friend and Uni prof. didn’t send me to a hematologist even at 750! A year later I was in the hospital with a TIA and was diagnosed. She always said she thought it was an infection and apologized many times over. It’s not good to go to friends. They see more than or less than what you have. They have difficulties staying objective.

amandaja88 profile image
amandaja88 in reply toEbot

Thank you for the reply. Hopefully I will just need baby aspirin

Wyebird profile image
Wyebird

Hi welcome, I would insist on a heamotologist appointment ASAP.

Platelets rose for a reason. Good luck

amandaja88 profile image
amandaja88 in reply toWyebird

If this platelet count is higher I'll definitely be making an appointment

Wyebird profile image
Wyebird in reply toamandaja88

Good

amandaja88 profile image
amandaja88

I also hope it is not TMI, but for a few months I have had slight blood with bowel movements.

Anag profile image
Anag

I had my first little TIA (light stroke) at about 550. I hadn’t been diagnosed yet. Everyone is different. I was also 18 older than you. I am a jumper. My thrombosites go up and down despite meds. My doctor and I try to keep me at 500, give or take 150. I started therapy with Anagrelid at 909, 18 months ago. A week before that, when I was finally diagnosed, they were 823. I do believe that stress plays a role.

Stress=Lots of Cortisol=Inflammation=Illness.

When you have a serious illness, it’s important to have a good and also affordable doctor. Regular check ups are necessary. Some people need them 2x a year, some like me, almost every month. You have to get to know you body really well. Some doctors visits with close data taking will be necessary. You will be able to plan better and will feel more at ease! Hope to have helped. Cheers!

Doggy1903 profile image
Doggy1903

You need monitoring but I started out last year with raised platelets, and now have medication. hydroxycarbamide. The team are fantastic and if you have to attend haematology, feel confident to say, you will be very well cared for.

cmc_ufl profile image
cmc_ufl

Just seeing how things turned out for you. Did you ever find out why your platelets were elevated?

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