Symptomatic with moderate raised platelets

[Lions3]

Hi all, is there any correlation between how high your platelets are before you experience symptoms? My platelets are between 500-600 and I seem to be symptomatic. But I’m a complex case as I have ET, had a recent brain tumour removed & recent b12 deficiency so my symptoms could potentially be from any of these conditions. (Had 1st appt today at Peter Mac hospital with mpn specialist & awaiting a bone marrow biopsy, currently on aspirin only).

[hunter5582]

You have actually asked a rather complex question. There is no linear relationship between risk of thrombosis and platelet levels below 1 million. For some of us it is actually our risk of hemorrhage that goes up as our platelet levels rise. The secondary symptoms that many of us experience have to do with other consequences of deregulation of the JAK-STAT pathway. At the core, MPNs are inflammatory disorders. Secondary inflammation-related disorders are pretty common. Constitutional symptoms like fatigue are also common. These symptoms are not caused by having too many platelets. The thrombocytosis and these other symptoms are all caused by deregulation of the JAK-STAT pathway. Some people find that the same interventions that lower platelet levels decrease the other symptoms as well. This is not always the case. MPNs are quite variable in how they present. Each of us can present quite differently.

It can be really hard to sort out what is the MPN and what is something else. There is often overlap of symptoms. There can also be overlap of disease process.

Like you, I have a Vit B deficiency and have had a recent brain tumor resection. I have PV that includes thrombocytosis. I do not feel any different whether my platelets are in the 500s or 900s. I can tell when my ertyhrocytosis is up as my blood pressure goes up. For me, controlling the erythrocytosis is the key to my treatment. Controlling the secondary symptoms, all of which are inflammatory, is also very important.

I have found that it is really important to consult with a MPN specialist especially when you have a complex case. Most hematologists do not have the KSAs to provide optimal care for these rare disorders. That is the best way to get your questions answered and ensure you get the treatment you need.

Hope that helps.

[Aquinas in reply to hunter5582]

Very informative, Hunter.

[Lions3 in reply to hunter5582]

Thankyou, that does really help knowing that someone else has/had an mpn, b12 deficiency AND brain tumour resection and is still doing ok. We’ve got this (I think) 🙏🏼

[hunter5582 in reply to Lions3]

I think that makes us at least double rare. My tumor type i had was a Grade-1 Adult Pilocytic Astrocytoma. Rate of occurrence in adults = 1/60,000. The tumor type is related to another condition I have, Neurofibromatosis type 1. Having two kinase-based disorders that overlap in ways that are not well understood is an interesting learning challenge. I am learning way more about proteomics than I even thought I would need to.

Do let us know how you get on. We definitely have this! 👍👍

[Ebot]

Hi there

This is an issue that comes up a lot particularly around fatigue. Unfortunately some patients get told ‘well your numbers are fine (low) so whatever you’re experiencing can’t be related to your MPN’. But this simply isn’t true.

There isn’t much correlation between numbers and the experience of symptoms. Some MPNers with higher platelet counts etc can be (relatively) symptom free and others with lower platelets counts experience a significant symptom burden.

But it’s complicated and the platelet count is not the only ‘number’ to factor in - ferritin levels, haematocrit etc can all make a huge difference to how you feel. And as you say if you suffer from other conditions it can be hard to tease out exactly what is responsible for which symptoms.

The important thing is that your haem team acknowledge and respond to your experience of your symptoms. And even if there is no appropriate medical intervention having the space to tell your story and articulate your concerns is necessary and valuable.

[Chaz1]

There isn't always a correlation between levels & symptoms. My husband was diagnosed because he was symptomatic & his platelets were around 600/700. He eventually had his diagnosis changed from ET to ET & PV. His HCT levels aren't high enough to be diagnosed with PV only. He is under a MPN specialist unit & they try to control his levels but they are never text book. They drop when you don't expect them to & rise dramatically at other times. He is in the process of looking at meds to see if they can keep his levels consistent to see if they can help him with his symptoms.I'd talk with your consultant and monitor what your levels are and record your symptoms. This will help you see if there is a level that is your optimal. There isn't always but it's what was recommended to us by the hospital.