ET and awaiting results

[De12]

Hi to everyone,

Happy Easter!

I am awaiting result from genetic testing and rang the haematology on Friday gone as it was 4 weeks when I had the blood test done.

Even thought my platelets are elevated to 800 they go down to now 557, why does this happen?

I feel OK but mild symptoms for a whole and then if I over do it my platelets are back up higher. My platelets have been elevated since 2009.

Much appreciated any input please.

D

[hunter5582]

It is normal for platelet levels to cycle by as much as 100K in a single day in response to what is going on in your body. Bleeding, inflammation, injury, infection - all can cause your body to make more platelets. When you already have thrombocytosis due to a MPN, then the levels can cycle even higher. For nearly 30 years I have cycled between 500s - 700s. Occasionally cycled higher. This is pretty common with ET/PV.

Understanding why this happens requires a basic understanding of hematopoiesis. Hematopoietic Stem Cells (HSC) make Myeloid Stem Cells. Thrombopoietin (TPO) chemically triggers the creation of Megakaryocytes through a series of steps. Megakaryocytes make platelets. The driver mutations cause the "on switch" for this process to be always on. Your body does not need TPO to make platelets. When there is a spike in TPO, then it will make even more platelets.

Here are a few good videos that explain the process. Hope this helps answer your questions.

Good explanation of what the driver mutations do

youtube.com/watch?v=zHwTIJb...(Not working as expected?)

Includes Platelets too

youtube.com/watch?v=nyKxu7K...(Not working as expected?)

Red Blood Cell production just in case you are interested.

youtube.com/watch?v=kcnOXlr...(Not working as expected?)

[De12 in reply to hunter5582]

Many thanks Hunter, I will look at the videos now.

Can ET runs on families?

Thanks a million

D

[hunter5582 in reply to De12]

Yes. ET can run in families. It is called Familial MPN. The phenomena is under investigation. My daughter an I are participating in a Familial MPN Study as she also is positive for the JAK2v617f mutation, Currently diagnosed with ET, but likely headed towards a PV diagnosis. mpnlab.org/participate-in-s...

It is thought that there is a JAK2 haplotype that predisposes people to acquire the JAK2 mutation. This finding has been around for a while and appears to be valid. Here is one example of the research.

ncbi.nlm.nih.gov/pmc/articl...

You will hear from others on the forum that MPNs run in their families too. Genetics is an important part of what is going on.

All the best.