Query about platelets

[lynnieb]

My platelet s went from 1200, to 999 to 1400 within a 48 hour period. Is that ok?

[Mazcd Partner MPNVoice]

Hi Lynnieb, platelets will go up and down all the time, if you are concerned then phone your specialist nurse for some advice. Maz

[Hidden in reply to Mazcd]

Hi Maz, are there any scientific papers on this phenomenon?

It makes me think blood tests are pretty useless if they can vary that much in such a short space of time.

I can see doctors making rash decisions on use of drugs when perhaps if they had taken the blood a day later, the results would have meant no drugs would have been prescribed .

[Tico in reply to Hidden]

That is a very good point Debra. Tina.🤗

[Mazcd Partner MPNVoice in reply to Hidden]

Hi DebraNL, Hu can cause oscillations in platelet counts this is a well described but rare phenomenon.

[Hidden in reply to Mazcd]

Thanks Maz. Still doesn’t explain my own blood results. I had two tests taken less than one hour apart in the same hospital with a difference averaging about 400, (The same thing happened on two separate occasions 6 months apart . ) Plus i am not on any treatment .

My haematogist had no explanation for that. Very weird.

[socrates_8]

Hey Lynnieb...

Your Platelets are indeed up and down...

However, I would be guessing to know what your MPN is because you've not told us a great deal about your diagnosis, your Driver Mutation, when you were diagnosed, and what Med's you might be taking or not etc...

Notwithstanding, all of those incidentals, however... and I really do not want to frighten you... BUT... Your Platelets are bordering on very dangerous levels...

Maz is absolutely correct, if I was you I would be contacting my medical team ASAP! And be screaming at them for answers...

Having very high Platelets, is often connected to having a Transient Ischemic Attack (TIA). These are known as minor brain strokes. However, they can be life threatening too...

So please... get hold of your medical team at once, and please demand some answers from them... It is YOU who must take action here Lynnie

And do please keep us all posted as to how things progress ...

Best wishes Lynnie & get busy girl...

Steve

[Hidden in reply to socrates_8]

Hi Steve,

Several well researched papers I’ve read seem to suggest :

“ platelet count per se does not correlate well with thrombotic risk” BJH March 2010.

“Patients under age is 60 who are otherwise asymptomatic with a platelet count of less than 1500 have a comparable risk of thrombosis approximating normal control population “ BJH Sept 2015.

“ whether the finding of platelet count above 1500, absent of other clinical findings should be rational for cytoreductive therapy has been debated “ Clinical advances in haematology and oncology October 2017.

It would seem even the experts can’t totally agree on how dangerous high platelets really are. Of course there are many other thrombotic risk factors too that would need to be considered as that can significantly skew the final picture .

Personally, I have, ( on several occasions) had two blood tests within 1 hour of each other that gave vastly different readings . A difference between the two tests averaging 400. That alone makes me highly suspicious of blood tests results .

[socrates_8 in reply to Hidden]

Hey Debra...

Of course there are always many variables at play, because as we all are well aware, we are all just a tad different from one another...

In my own experience, and because I do often suffer from a higher platelet regime. I do have some sense of when I am experiencing a higher than usual platelet count, (it is the lived experience in my case of course). However, I have also suffered from Two (2) TIAs that I am aware of, and my advice is to always err on the side of caution...

As you quite rightly suggest, the experts, (don't much like such definitions by the way), cannot really agree on much themselves... Hence, all the more reason why we should all play it as safe as possible, in my view...

Best wishes

Steve

[hunter5582 in reply to socrates_8]

To add to this discussion, when platelet levels elevate - some people are more at risk for hemorrhage than thrombosis. Acquired von Willebrand Disease can occur with platelet levels only in the 800Ks per more recent research. In my own experience, whenever my platelet levels rise above 700K, my von Willebrand factors tend to drop below the normal range.

I think the range of what we experience and discuss here just demonstrates why individualized treatment is so important. Standard protocols just cannot be applied blindly to all MPN patients. We each need a treatment approach that matches our presentation of the MPN.

All the best to all of y'all.

[lynnieb in reply to socrates_8]

I phoned my haematologist,who said that the big rise was probably due to the fact I'd had surgery (last week, on 30/10) and it was my body's response to that. I am having my bloods repeated next week, and I 've started back on my aspirin. The genetic condition I have, neurofibromatosis 1, means when I have surgery I can bleed like a stuck pig. And indeed I did! I had a plexiform tumour on my face and in my eye removed and I swelled up like a balloon, and my left eye is still tight shut. The bruising is down my neck, back and front. My plastic surgeon said it was difficult to balance the risk of bleeding with the high risk of clotting and developing a DVT or PE. They stopped the aspirin just briefly.

When I have it repeated next week, I'll let you know where things are. Thanks for all the advice 👍

[Lifam]

I totally agree with what Maz and Steve said.

[lebowski42]

Why are you having blood tests so close together? I usually have one once a month and only if getting a phlebotomy would I get another. Talk to your hemotoligist about controlling platelet count with interferon. I refused hydrea.

[lynnieb in reply to lebowski42]

Because I was in hospital and I'd had a major operation. My fbc was checked before for a baseline, and after to check my hb because I bled a lot. My bloods are usually done every 8/12 or so. My haematologist says I don't neef anything except aspirin atm.

[hunter5582]

Platelet levels routinely cycle by 100K in 24 hours. Other factors can also increase your body's production of platelets - bleeding, tissue damage, inflammation, etc. Reactive thrombocytosis in the presence of a MPN is something to keep an eye on and definitely talk to your provider about; however, it is never worth hitting the panic button over a single lab read. It is the trend and pattern over time that matters. A high read could be anything from a lab error to your body's reaction to something unusual.

Please be sure to follow up and get another CBC done. All the best.

[Mazcd Partner MPNVoice]

Hi Lynnieb, I have some further advice for you from the medical team: Hydroxycarbamide can cause oscillations in platelet counts this is a well described but rare phenomenon.

Needs discussion with local team.

Best wishes, Maz

[lynnieb in reply to Mazcd]

Hi there,

I don't take that though! Thanks anyway