High platelets for 5 years now

[mochapie]

I just found out my platelets are 564 . For about five years now they're always running a little high anywhere from 450 to 520 but now they are at the highest as well as my white blood count being 11.0 right now. I just tested positive for strep today but regardless of this all the other blood work is pretty normal but the platelets are always elevated for years now as well as the RBC sed rate and C-reactive protein. I am a 45 year old female. this is been going on since I hit 40.

[Mazcd Partner MPNVoice]

Hello Mochapie, what has your doctor said about your results, have you been told that you might have a MPN? Kind regards, Maz

[mochapie in reply to Mazcd]

What is a MPN and they have put me in with a hematologist who has checked for a jak2 mutation which is negative and checked for autoimmune disorders like lupus and rheumatoid arthritis and again that's all negative and they said there's really no explanation they're just going to recheck it every so often that I may just be a person whose platelets Run High they also say the reason for high platelets are either 3 things Cardiology such as heart failure and they put me in with the cardiologist and everything comes back okay or it could be the beginning of cancer and they really don't believe that's what it is or could just simply be inflammation such as osteoarthritis and I have had a knee meniscus tear 2 years ago repaired arthroscopic

[Mazcd Partner MPNVoice in reply to mochapie]

Hi Mochapie, I would suggest that you read the information on our website mpnvoice.org.uk this explains what MPNs are and how they are diagnosed and treated, this might help you understand more about them, BUT I am not saying that you have a MPN, you do need to discuss the results of your tests further with your doctors and to discuss with the doctor how they are going to manage this with you, it is obviously very distressing for you having all these tests and not knowing what the diagnosis is, hopefully your doctor will be able to put your mind at rest soon. Kind regards, Maz

[mochapie in reply to Mazcd]

Thank you I will

[Concerned10 in reply to mochapie]

My platelets have been in the region of 447-519 for 3 years. All my blood tests are fine. I do have Osteoarthritis and am sure the inflammation from that is what is causing it. My hematologist is discharging me once I have had a CT scan which he said he is sure will come back clear, its just to dot the i's and cross the t's. I was really worried, but all seems to be ok.

[Applesnpears]

High platelets can have a number of different causes, including infections.

You don' t mention any symptoms. Has your doctor suggested you have an MPN? You may need a referral to a haematologist to investigate further.

[mochapie in reply to Applesnpears]

Thank you for replying when one of the other people replied I might have an MPN that absolutely petrifies me

I was seen by a hematologist that did a battery of tests and basically said you may just be a person whose platelets Run High .now my red blood cell count and white blood cell count almost always runs normal and typical but the platelets always run a little over 450 to 550 so I don't know is that massive massively High or not .but I have been ruled out for autoimmune disorders and they did a jak2 mutation blood work panel and that was negative as well. Do not want to do a bone marrow biopsy

[Applesnpears in reply to mochapie]

When you had your previous blood tests done were there particular reasons. It might be that the platelets are a response to infections that took you to the doctors in the first place.

[mochapie in reply to Applesnpears]

I have a few small thyroid nodules in my neck which one was biopsied and everything was fine with that and that is why they do a constant blood count on me to check and make sure everything is okay because I ended up in the hospital in 2015 just feeling neck and throat pain I am guessing it 45 years old it's pretty common to have a few small nodules in your neck do you know if running between 450000 + 550000 is really a big deal I'm wondering how high platelets can actually go up to because some doctors say they're slightly elevated and don't worry about it and another doctor will say you need to see an oncologist and make me feel like I have cancer or something horrific going on like that

[Applesnpears in reply to mochapie]

Platelet counts can go much higher but at 450 to 500 over 5 years they might a thorough investiation.

What have your doctors said about your elevated RBC sedimentation rates and C reactive protein results. These are indicative of reactive thrombocythaemia. Have the doctors considered your thyroid function as a possible cause?

[mochapie in reply to Applesnpears]

Thank you for responding so fast they have always looked at my thyroid and that always comes back to Perfect. all the blood Works minus the platelets the RBC and the C-reactive all comeback perfect .I am about a hundred pounds overweight if not more I have terrible allergies and they have put me in with a rheumatologist who has said that the RBC being at about 40 at most is nothing to worry about that could be allergies sinuses your heel spur it could be anything she basically said I wasted her time that she sees people in the hundreds and hundreds of RBC blood work that have real arthritis. she said you just have typical aging arthritis indicative of age. Cardio said ekg and echo perfect, dr says blood being high could be inflammation of very overweight and typical issues osteoarthritis with age. Hematology dr says blood can just be running high sorry no answers.

[Applesnpears in reply to mochapie]

I've found a study that concludes that being significantly overweight can be the cause of elevated platelets.

pulmonarychronicles.com/ind...

It also says that being overweight is an inflammatory condition possibly accounting for the other elevated results.

So if you can lose weight your platelet counts should come down.

[mochapie in reply to Applesnpears]

You're so right and I hope I don't have a MPN which sounds like basically blood cancer. But the drs are not concerned about that and I have been on metaprolol 25mg for a year or so now for blood pressure and I do watch my heart with yearly echo/ekg but I have been overweight since having kids

[Applesnpears in reply to mochapie]

As others have said a bone marrow biopsy would help rule out an MPN. It's not a pleasant procedure but is manageable with gas and air. Given your platelet counts and other indicators you should ask your doctor about taking low dose asprin to reduce the risk of thrombosis.

Wishing you all the best.

[Shalomyy in reply to mochapie]

Do you have any dental issues? Any history of root canals or teeth that have been pulled? any history of surgeries?

[lynnieb in reply to mochapie]

A bone marrow biopsy is not as bad as it sounds. I had one 2 years ago when my platelets were 1400. I was nervous, but to be honest, it was fine. I was a little sore the next day, but the test itself didn't hurt at all. Hope that reassures you

[mochapie in reply to lynnieb]

Thank you so much for the kind words

[mochapie in reply to lynnieb]

Do you mean platelets were only 1,400 or 1.4 million. How high is the highest that platelets can go .some of the nurses that call me back with my platelet count when it's at 500,000 say it's only slightly elevated don't worry but when I see a hematologist they look at you as if it's the end of the world so I get conflicting outcomes

[Lifam]

Be honest, a BMB is the only proper diagnosis of why platelets care on the high side. And a normal blood test can tell if high platelets are due to any inflammation, if not then having a BMB is a must to confirm the reason why.

[hunter5582]

Well this sounds like a real mystery and not the kind we enjoy reading. Do please keep up the investigating until you get it figured out. It certainly seems like something is going on. While it could be one of the more atypical Myeloproliferative Neoplasms (MPN) (e.g. triple negative ET), it could also be some form of a reactive thrombocytosis going on. Inflammation is a trigger for platelet production. Inflammation, bleeding, tissue damage - all con trigger platelet production. If you have not already seen a MPN specialist (not all hematologists have this expertise), then it is worth finding one to consult. Here is a link to patient recommended MPN-expert docs. mpnforum.com/list-hem/ .

FYI - I was diagnosed with Essential Thrombocytosis (ET) over 30 years ago. It progressed to Polycythemia Vera (PV) about 7 years ago. Still alive and kicking! Have had and continue to have a good life despite the MPN. I actually have more trouble with the inflammation related issues that accompany the JAK2 mutation than the blood cell numbers per se.

Hope you get it all sorted out ASAP. All the best.

[JT_Marlin in reply to hunter5582]

Hunter, did you or do you take Pegasys or other interferon as treatment? Curious if the JAK2 allele burden has come down over time? Presumably your doc doesnt check that frequently or ever other than the original test?

My understanding was that interferon was shown to reduce the allele burden and presumably therefore platelet/rbc counts as well?

Sounds like that hasnt been your experience though?

[hunter5582 in reply to JT_Marlin]

I have never taken interferon or ruxolitinib. I have been on hydroxyurea for three 1 -year periods of time over the course of 30 years when my platelet levels spiked. This last time (last year) I had toxic effects even a very low dose, so it appears that I am now hydroxyurea-intolerant. Fortunately, I do not need cytoreduction per the MPN-expert doc I consulted. I am following a phlebotomy-only protocol.

I have a relatively indolent form of PV. My mutant allele burden is only 25% - it has not been retested. Despite 30+ years of a MPN - I have never had a single incident of thrombosis. When on aspirin, I have tended to bleed too much and bruise far too easily. When my platelet levels get up towards 800K my von Willebrand Factors tend to drop below norm, but I do not have Acquired von Willebrand Disease. Platelet levels cycle between low 500s and mid 700s typically. Mild-Moderate erythrocytosis. Leukocytes are WNL. So far, the phlebotomy-only approach seems to be the best approach for me. The erythrocytosis is well controlled. My BP dropped to WNL. No issues experienced despite the ongoing thrombocytosis.

I will at some point repeat the mutant allele burden check. I have never had a BMB. Every hematologist I have consulted, including the MPN specialist, says there is no need in my case.

All the best to you

[mochapie in reply to hunter5582]

Thanks for helping with my issue, I have looked at polycthemia vera and I have to say I do fall in a few of those categories but not regularly. From time to time I do like itchy skin but I did get blood work for a jak2 mutation and its negative as well as blood work for autoimmun disorders so i guess im a mystery or being obese is causing the rbc, c reactive and platelets to be elevated always. My rbs and wbc are perfect but once in a while the wbc is little high and I have to say that's when i notice hot feelings, anxiety, itching, throat closing up feeling, ear hurts, etc. It seems like I may be like you and polycthemia vera is unfortunately in the future??? But the drs say nothing wrong, 2 hematologists now as well

[hunter5582 in reply to mochapie]

Did they also check for the CALR and MPL mutations? it sounds like the docs have just not been able to figure out what is going on. That is different than nothing is wrong. I certainly would not assume that this is a MPN, but it is possible. Please do check the list for MPN-expert docs. You really need to see a doc who has the right expertise.

[mochapie in reply to hunter5582]

Thank you so so much for your help. I will check those blood tests. Recently I was on amoxicillin 875mg 2xs day 10 days and it has messed me up horribly. 3 weeks to get a GI SPECIALIST appointment. It seems like any little thing and I am down for the count. Some drs lump this into anxiety and last time at the ER that's what my discharge papers say. I had been there 5 years ago for 3 nights and since NO answers that's what they say

[hunter5582 in reply to mochapie]

I would say that it would be abnormal NOT to be anxious when potentially serious unexplained things are happening in your body. There are a whole host of things (e.g atrial tachycardia) that get misdiagnosed as "anxiety" - particularly in women. Having said that, anxiety is a real problem. Anxiety can be exacerbated by inflammatory conditions. The role of cytokines, cortisol and epinephrine in both inflammation/illness and anxiety are quite significant. There is a feedback loop between the brain and the rest of the body - both biochemical and via the sympathetic/parasympathetic nervous system. The mind-body connection is quite real and has a profound impact on us.

At this point, it does not sound like anyone knows exactly is what is going on. Do please pay attention to the importance of the mind-body connection as it is a vital part of your health and move towards wellness. However, you need answers to your very legitimate questions. One thing I have found is that assertive patients receive higher quality care. Passive patients do not. You will likely have to push your system of care to provide the answers you need. hope you get answers soon.

[bluteco]

I just got my blood test back and my white blood count is 9.60 and red is 5.38 and platelet is 439 and I’m so worried right now. My platelets have been on the high side since 2016

[Ckelley24]

I know I am a little late, but I am wondering if you ever found the underlying cause for your elevated platelets? Mine are 460-515 ish for the last 3 lab draws (6 months) and I am worried. Thank you, so much, in advance!!