Elevated platelets - help: Hi all, I’m new to this... - MPN Voice

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Elevated platelets - help

Georgiajen123 profile image
10 Replies

Hi all,

I’m new to this forum and need some help as I’m feeling a bit worried after googling why my platelets could be elevated. During my pregnancy my platelets were always elevated sometimes just below 500 I think I can recall lowest being 480 to around 580 anyway I’m now 4.5 months post partum and I’ve had numerous blood test my platelets have been 553, 576 and now they are at 528 so I’m hoping they are starting to decrease. Apparently they should have already gone back to normal I’ve never had a blood test before as I’ve not needed one, I’m 25 and have been lucky with my health this far. The doctor told me to get my smear done ASAP which I’ve booked in for Friday and that’s worried me and he checked my blood pressure and felt my tummy and apparently both are normal. I’ve had a full blood count and as far as I’m aware the only thing that come back as abnormal was my elevated platelets. Doctor has said to go back if anything changes however to book another blood test in 4-6 months. Question is I’m worried about waiting this long as if there is something wrong then that is time wasted... should I push for further testing? Does anyone know if I can rule anything out currently as my full blood count was ok apart from the abnorma platelets?

Sorry for long paragraph just really need some advice right now.

Thanks

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Georgiajen123
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10 Replies
francesb profile image
francesb

Hi, I’m not a doctor so can’t advise properly but would say not to worry too much, your platelets have only been just above top of normal so only slightly elevated and this can happen for all sorts of reasons. It sounds as if your doctor is keeping an eye on things but as it is only a slight elevation possibly wants to see if things correct themselves. I don’t know how pregnancy affects blood counts but someone on here probably will. Best wishes.

socrates_8 profile image
socrates_8

Hey Georgiajen123... :-)

Firstly, welcome to our rather exclusive little MPNer's Club. We have to be extremely unique people in order to qualify for this club, and while I am obviously adding excess levity to this response... The truth is that this is the very best place to be if you do have an MPN, in my view...

Everyone here is so friendly and always trying their very best to be helpful... :-)

Next question; have you actually been diagnosed as having an MPN at this juncture?

High Platelets, (and yours are only a little high at the present), might be caused by a virus or an infection of some kind. When that diagnosis is given, it is usually called Reactive Thrombosis (RT).

Whereas, if you have tested positive for any one of the three known 'Driver Mutations' - (JAK2, MPL or CALR), and you have very high Platelets you could be diagnosed with anyone of three (3) more classic Myeloproliferative Neoplasms (MPNs); Essential Thrombocythaemia (ET), Polycythaemia Rubra Vera (PV), or Primary or Post Myelofibrosis (MF).

A Full Blood Count (FBC), will help to observe any inconsistencies in our bloods. However, in order to know if one actually has an MPN, usually, other tests are conducted to see if a 'Driver Mutation' are present, and if so then further tests might also be ordered etc.

If you remain overly concerned about monitoring your bloods, then simply visit a GP, and explain your concerns suggesting you would like a monthly FBC conducted just to keep an eye on things in the first instance...

Hope that this helps a little...

Best wishes

Steven

(Sydney)

PS. Maz, the website coordinator can direct you to where you can obtain further literature if you need it etc...

Here is a link on ET:

mpnvoice.org.uk/about-mpns/...

Ebot profile image
Ebot

First, congratulations on the birth of your baby. Secondly, it sounds as if other than those pesky platelets all your other signs and counts are perfectly good which is excellent. Pregnancy and birth can really give your body a bashing! Thirdly, by all accounts you seem to be getting well looked after and the doctors are on your case. Four months will fly past, but if you’re still bothered in a month or two, why not just ask your GP to repeat your FBC simply to put your mind at rest? Fingers crossed the platelets are trending downwards. Lots of fairly innocuous things - viruses, infections etc - can cause a spike. And if they continue to climb well then I’m sure your GP will refer you to a haematologist for further tests. And we’re here to support you if you have more questions. Meanwhile, enjoy your baby. The first year is so special and goes so quickly.

Georgiajen123 profile image
Georgiajen123

Thanks all, your advice really does mean a lot and it really helps. I think I’ll go back in a month or two for another FBC and go from there. As far as I’m aware pregnancy usually decreases platelet count rather than elevate them but maybe my body reacted differently? I guess birthing a baby could be classed as trauma although my doctor did say they should have gone back down by now, I guess with all things health you assume the worst!

Steven, I haven’t been diagnosed but I’ve read so many posts from you lovely people and thought this would be the best place to ask for any advice or help.

Thank you all once again for taking the time to reply, it’s put my mind at ease slightly and it really means a lot. I will keep you updated of course.

socrates_8 profile image
socrates_8 in reply to Georgiajen123

Hey again... :-)

Sounds like a good plan and a positive place to start... But if you do have further concerns you might suggest having a test to see if you have a JAK2+ mutation...

Please do keep us posted to your further developments when they materialise... and very best wishes... :-)

Steven

Eadaoin profile image
Eadaoin in reply to socrates_8

It’s possible to have a raised platelet count without having any of the Mutations. I know because I have been diagnosed with MPN/MDS since 1998 and still no sign of any of the mutations mentioned.

socrates_8 profile image
socrates_8 in reply to Eadaoin

Hey Eadaoin... :-)

Wow! 1998... seems like such a long time ago now does it not?

And you are obviously still here too with your MPN, which was what by the way? ET possibly?

High Platelets, are often associated w/ having ET, and you are correct in that it is indeed possible to be what is termed, 'Triple Negative' for the three known Driver Mutations, (JAK2, MPL, and CALR).

How is your condition at the present, symptoms etc...?

The tests for CALR only started in recently as it was only uncovered in 2013. When were you last tested for a Driver Mutation?

Maybe asking your specialist about this would be a great place to start too...

Hope this helps a little...

Best wishes

Steven

Searcher56 profile image
Searcher56

Do not waste energy in worrying about your platelets, they can be controlled with medication. Instead, at the young age of 25, start now looking after your health, if you have not already, do not wait till some major health concern forces to make a change.

hunter5582 profile image
hunter5582

You already have some great information in the other responses. The only thing I can add is that based on your description, even if you have Essential Thrombocythemia, you would fall into the low-risk category. Many docs would advise monitor-only or aspirin only for a young person with platelet levels like yours. I was diagnosed with ET over 30 years ago. My ET progressed into PV about 6 years ago. I have lived a high-quality life with relatively few issues due to my MPN. Most people with ET live normal life spans and can deal with any symptoms that occur with proper treatment. You have plenty of time to figure this out and find out what your status really is. One thing to consider is that many docs, even hematologists, have little or no experience with MPNs due to their rarity. I found it very helpful to consult with a true MON-Specialist doc. Found that doc on this list of patient recommended docs. mpnforum.com/list-hem./

All the best to you.

Wyebird profile image
Wyebird

For peace of mind I would ask to see a heamotologist

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