reactive thrombocytosis, headache, hip pain, platlets 580x Esr 22 and pcr 7.7 hellllpppppp!

[Bowbow7]

I have been having headaches for 8 weeks along with front hip pain (not sure if they are related) I had bloods taken and was given all normal apart from high platlets 580, ESR 22 and PCR 7.7. I am seeing haematology in March but I am desperate to get an idea what is going. My headaches are more annoying than anything else!

[Mostew]

Hard to say . Headaches definitely CAn be part MPNs try doing what you can like anti inflammatory diet, to be positive . It's hard but choice is sink or swim . (Floating ok !!!!!)

Let us know how March appointment goes .

Best wishes to you

[hunter5582]

Are you certain that what you are experiencing is a reactive (secondary) thrombocytosis? Has your care team made a formal diagnosis? There is a difference between thrombocytosis caused by another condition and thrombocytosis that is a primary condition = Essential Thrombocytosis (ET). ET is usually caused by one of three driver mutations in Hematopoietic Stem Cells - JAK2, CALR and MPL. Checking for the driver mutations will likely be one of the first steps if this has not already been done.

Headaches are a common MPN microvascular symptom. It is also common to see elevation in inflammatory markers. The deregulation of the JAK-STAT pathway that is part of MPNs does more than make the body produce too many blood cells. It also causes overproduction of inflammatory cytokines. This is thought to be responsible for many of the secondary symptoms people with MPNs experience.

If you are positive for ET or another MPN, it is important to consult with a MPN Specialist. MPNs are rare disorders and most doctors, including hematologists, have little experience with them. here is a list just in case it is needed. mpnforum.com/list-hem./

Please do let us know how you get on.

[Bowbow7 in reply to hunter5582]

Hi thanks for your reply.

No my doctor has diagnosed this from my blood results. Would this be something they could diagnose from a FBC? I am starting to her night sweats as well which is starting to worry me. I am 38 which I forgot to mention not sure if that makes a difference. With MPNs would there be any other signs in my bloods?

Thanks

[hunter5582 in reply to Bowbow7]

MPNs are often first noticed based on a FBC. It is important to be clear about the terms used. Thrombocytosis = platelets > 450. This is a symptom, not a diagnosis. Thrombocytosis can be either primary (essential) or secondary (reactive). People with Erythrocytosis (too many RBCs) and leukocytosis (too many WBCs) can also occur. Both can be primary or secondary. Primary erythrocytosis = Polycythemia Vera, one of the MPNs, making the diagnosis Polycythemia Vera. Leukocytosis can also occur with PV.

Additional testing, possibly including a Bone Marrow Biopsy will be needed to determine a diagnosis. The hematologist will likely start with a more comprehensive panel of blood tests, including a CMP and test for the three driver mutations. The hematologist will look to rule out secondary causes and rule in the presence of a driver mutation. The hematologist may also need to look at the bone marrow morphology to make the diagnosis.

Here is a bit of information about both essential and secondary thrombocytosis.

Essential emedicine.medscape.com/arti...

Secondary emedicine.medscape.com/arti...

Headaches and night sweats are common MPN secondary symptoms. This is not, however, diagnostic. People get these symptoms for other reasons too. Suggest not diving too deep down the rabbit hole trying to figure out what is going on. Random Googling about MPNs would be pointless until you know what is going on. You will have plenty of time to learn about MPNs if you need to.

ET is usually diagnosed later in life, but people in the 30s do develop the condition. I was diagnosed with ET when I was in my 30s. That was about 30 years ago. It progressed to PV about 9 years ago. I have lived a rich life while managing the MPN and continue to do so. ET is a condition that can be successfully managed.

All the best to you moving forward.

[Bowbow7 in reply to hunter5582]

really appreciate your message. Thank you

[Bowbow7 in reply to hunter5582]

I prob should mention mg headaches don’t start till the afternoon is that common with MPNs?

[hunter5582 in reply to Bowbow7]

I have never heard of timing of MPN headaches being an issue one way or the other.

[Bowbow7 in reply to hunter5582]

sorry do you mean they are normally consistent? There all the time? The doctors have now booked me an mri (different doctor) he thinks migraines!

[hunter5582 in reply to Bowbow7]

Headaches in MPNs are a microvascular issue. I am not aware that there is a pattern for people with MPNs who experience headaches. People who has experienced this can speak better to that. I have never experienced headaches with my MPN variant. I have experienced another microvascular symptom, erythromelalgia. There was no timing pattern to it. The good news is that low dose aspirin resolved it.

Consulting with a neurologist who specializes in migraine is a very good idea. Having migraines and a MPN are not uncommon at all. They may or may not be related. I have an unrelated form of visual migraine due to a brain surgery. My migraines respond very well to Ubrelvy, a CGRP inhibitor. The CGRP inhibitors can be very effective for stopping a migraine that has begun or for preventing migraines. Your care team can advise on that if it is appropriate for you.

[RazB]

Hi, headaches are so often caused by dehydration. Do you drink enough water? Not just occasionally but every single day? I used to suffer really badly with headaches but I upped my water intake dramatically and they pretty much faded away. X

[Bowbow7 in reply to RazB]

I did try that and didn’t notice any difference. Maybe I should try it consistently

[RazB in reply to Bowbow7]

I would try consistently as it certainly won’t do you any harm. Medical advise is 8 cups a day, I try to drink 2.5 ltrs+ a day and really miss it if I don’t. Re your platelets, don’t panic about that number, it’s not particularly high. Mine sit at that and I’m on a lot of Hydroxy and have been for years, my platelets are very stubborn and refuse to go below 550. X

[RazB in reply to RazB]

Also…hip pain…could be completely unrelated to ET. I recently started seeing a McTimoney chiropractor because of shoulder/neck pain (old whiplash/riding & car accidents) and she confirmed that my neck, shoulders, hips were all unaligned and causing headaches and pain. I see her about every 3 months for a session now, absolutely fantastic and life changing. I think it’s easy to think that everything we feel & experience can be down to MPN (I have definitely thought that!) but it’s not always and life throws up lots of other stuff for us to work out and deal with. Headaches often caused by stress too and it sounds as though you’ve got a bit of that going on. X

[Solyesh]

I would push for as definite answer as possible. In an MPN the trend can be as important as the absolute last reading...have your platelets been consistently elevated or is this a passing phenomenon?

Headaches, night sweats (and tingling and redness is hands and feet) were some of the key symptoms I had for years prior to a formal diagnosis of ET. Push to have them test for one of the most common drivers of ET as well (can be done with a simple blood test).

[Bowbow7 in reply to Solyesh]

hi I don’t have an pins and needles! I spoke to the doctors today and I have now been booked for an mri for thr headaches 🤷‍♀️

[Solyesh in reply to Bowbow7]

Good luck - hope things get sorted!

[nightshadow]

Glad you are getting the possibility of an MPN checked out. Obviously, headaches and hip pain can be totally unrelated to ET. In addition to dehydration, headaches can be caused by sinus pressure, even if you don't have a stuffy nose. Sinus pressure is a major driver of headaches for me, I usually take an decongestant before taking pain medicine to take knock out a headache. While you are waiting for your appointment, following a stretching or light yoga routine can help with the hip pain.