Hi all! Please bear with me as this is my first post.
History: 29F Caucasian, medication controlled asthma, allergies, and hypothyroid.
I have an appt with a hematologist next week, but my endo referred me because of a noticeably progressing trend upwards in my platelet counts over the past couple years. 2017-450, 2018-478, 2019-483, 2020-502, and current 2021-556.
Could my symptoms be related to this? Symptoms: extreme fatigue, muscle fatigue, soreness, stiffness. Joint pain, especially in hands and feet. Brain fog. And a handful of of other symptoms.
I did the bad thing and used Dr. Google (sorry! Lol) and I’m seeing articles pointing towards this being an early indicator of cancer. I realize that’s a very low chance and everyone freaks out about C, but given that three out of four of my grandparents have succumbed to it (2 at a younger age) it’s definitely on my radar and I don’t want a doctor to blow it off, if it’s something I should pursue.
Can anyone who has had high platelet counts like this share what their diagnosis eventually was?
Thank you for all of your insight!
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Munderdown7264
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Your haematologist will want to determine if your raised platelets are either caused by a mutation (Primary), or if they are Secondary - in response to something else going on ie; infection/ inflammation etc. This is all covered in the link below.
I have ET. In my case this was caused by the mutation Jak2 V617F. My presenting symptom was raised platelets (500) found in a random blood test.
Your symptoms could most definitely be related to your increase in platelets.
Stay away from Dr Google for now. You will get all the support you need here.
Welcome to the forum. you are ij the right place to learn more about thrombocytosis and what it means to have it.
You have already learned that one of the types of thrombocytosis is a form of blood cancer referred to collectively as a Myeloproliferative Neoplasm (MPN). Thrombocytosis can also be caused by other medical conditions, inflammation, injury, bleeding events, etc. This is referred to as reactive thrombocytosis or secondary thrombocytosis. When the thrombocytosis is not caused by another medical condition, it is considered to be a primary thrombocytosis - referred to as Essential Thrombocythemia (ET).
ET is one of several MPNs that also include Polycythemia Vera (PV) and Myelofibrosis (MF). There are three driver mutations in hemopoietic stem cells that cause MPNs (JAK2, CALR, MPL). All of these mutations impact hematopoiesis (blood cell production) via deregulation of the JAK-STAT pathway. The JAK-STAT pathway does more than produce blood cells. It also involved in tumorigenesis, apoptosis and inflammatory response. People with MPNs tend to overproduce inflammatory cytokines too. This is thought to be why we experience so many secondary constitutional symptoms. Fatigue is the single most common MPN symptom. Everything else you listed is well known to people with MPNs.
The next step will be to find out if you have one of the MPNs. This will be done with a series of blood tests, including checking for one of the driver mutations. JAK2 is the most common of these. Here are the diagnostic criteria the doc will look for.
Do be ware that MPNs are very rare. most doctors, including hematologists, have little experience with them. You need to see a MPN Specialist to receive optimal care for MPNs. Here is a list of docs with that expertise. mpnforum.com/list-hem./
While you correctly identify that ET is a "cancer" - it is cancer with a little "c" rather than cancer with a big "C". You are more likely to die with ET than from it. There are certainly issues to manage, but they can be managed. I was diagnosed with ET about 30 years ago. it progressed to PV about 8 years ago. I have lived a rich life and at age 65 continue to do so. Sure, there have been some challenges to mange and a variety of interesting health learning opportunities. However, these opportunities to learn how to manage things are challenges that can be met.
Please do stay in touch as this unfolds and let us know how things turn out. If you do have ET or another MPN, you will have plenty of time to learn how to manage it. This forum is a wonderful resource should you need it.
I have ET JAK2 - age 60, and your symptoms mirrored mine. The hematologist will hopefully run some tests that will determine whether this is an MPN or something more innocuous like low iron levels or a low grade infection. Even if it is an MPN, your platelet count isn't super high and the platelet increase isn't super fast. Even though it is disheartening to have this diagnosis at a young age, at least you will benefit from being able to manage the disease before it triggers anything more difficult to live with, like a stroke or heart attack.
I had a similar increase for years, then one year the numbers had really increased at a much faster rate and that is when they started to look seriously at an MPN for me.
Funny enough, when I posted this I didn’t even realize it was going into an MPN board, or what that really was. I’ve since learned more about this and I’d honestly be grateful if this ended up being my diagnosis, as the original studies I read pointed towards high platelets being an early indicator for breast and ovarian cancer, which run in all sides of my family. While an MPN diagnosis would be a huge thing to manage, it seems to be something that can be kept under control pretty well. I’ve learned so much just from the little bits I’ve read in this group. Thank you!
Let us know how things turn out. With the family history you have, if it turns out you have one of the other cancers , hopefully catching the rise in platelet levels means it will be diagnosed at a very early stage.
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