so, about six years ago my platelets started to be elevated. The doctors don’t seem too concerned. I was researching on my own a couple years ago and found out about ET. I started asking questions and advocating for myself. I asked to be tested for the Jak2 mutation and to be seen by a hematologist. It came back negative. The hematologist said that I have high platelets because my menstruation cycle is heavy. I was confused, because I didn’t understand how they could tell my platelets were high, because I menstruate heavy. Why wouldn’t I menstruate heavy because my platelets are high. A since have had an endometrial ablation, and my platelets came down to about 400. That was about two years ago. I had blood work done, about a month ago, and my platelets were at 488. The doctor said “she doesn’t like it “. Put me on baby aspirin to bring down the platelets. Should I be concerned?
What is wrong with me?: so, about six years ago... - MPN Voice
What is wrong with me?
I have ET and am on aspirin, though I am an old girl. I don't think you should be concerned. Your platelets are still within range even though they are a bit high. Aspirin is to prevent your blood getting sticky. I think you have frightened yourself by doing your own research. I do it too but we are always advised not to because some of the information we read is misleading. Next time you see that doctor, have a list of questions that you need to ask, and tell them you are frightened; they will then realise the error of their ways (hopefully) in leaving you with a bit of a "cliffhanger". I wouldn't worry - that's the doctor's job. I would think your menstrual problems are more important for you to sort out, as I'm sure you must have a lot of stress because of them. Take care.😊
Thank you Maggie. I try to leave it up to the doctors but you're right, when they leave me out of the loop, it worries me more. When I get an answer like your platelets are high because of your heavy cycles, and then my cycles are no longer heavy (non-existent since the ablation), it doesn't make sense that they would still be elevated. There is absolutely nothing else wrong with my bloodwork...everything was great except for the deficiency in Vitamin D which I understand most people are. You would think that would make me feel better, but then I think "then why the heck are my platelets high if nothing else is wrong!?"
You should see a hematologist. I have had CALR positive ET for about 18 years now and my platelets often are only mildly above range. If I remember correctly my last platelet count was only 444. I have never had to be on medication for my ET except for baby aspirin. Aspirin does not lower platelet count it just helps to prevent clotting. Although your platelet count is not very high it would still be nice for you to know whether you have it or not.
Hi Clubdino. Thanks for your response. The hematologist is the one that told me my platelets were elevated because of the heavy menstrual cycles. But I think my next call will be to her to let her know that I no longer menstruate and they are elevated again.
The answer to your question is a bit more complicated than just checking for the JAK2 mutation. The differential diagnosis for ET requires checking for all three driver mutations (JAK2, CALR, MPL), ruling out secondary causes of the thrombocytosis, and possibly checking on bone marrow morphology. Note that any from of bleeding can cause reactive thrombocytosis. This is a normal response and heavy menstrual bleeding would be considered a potential cause of secondary thrombocytosis.
You are correct to think that thrombocytosis can cause excessive bleeding, however, this is normally at platelet levels much higher than what you report. Note that aspirin reduces platelet aggregation (thrombosis risk) but not the number of platelets. Aspirin does tend to increase bleeding as a result.
Given what you describe, suggest following up with a MPN Specialist. MPNs are rare disorders, and most doctors, including hematologists, have little experience with them. Here are two lists.
pvreporter.com/mpn-speciali...
What you are experiencing may well be a secondary thrombocytosis but you need a proper assessment to make this determination. Suggest it is time to advocate for yourself again and seek a more thorough assessment.
Thank you for your response!
hi I think taking aspirin is a really good step forward. My understanding is that aspirin will not reduce your platelets but make them less sticky.
Anything over 450 is considered high. Although yours are not alarmingly so.
Prior to my Et diagnosis mine used to be below 300.
I personally think you need to keep a copy of your blood tests and ask for a repeat one every few months to see if anything changes.
At least your doctor is aware the platelets are high that is a major plus.
Good luck.
You need to talk to your doctor about secondary causes. Like Hunter said it can be reactionary from your period. Also, if you smoke, have sleep apnea, or even underlying autoimmune disease. OrI have managed patients that just have mildly elevated platelets and it never changes. Sent them to hematology and they just recommend watching them. I would just try to stay off the internet live a healthy lifestyle and have them recheck them. Beware of when you go, go either the week before your period or a full week after. That will give you a better idea. This site is an excellent resource if you have any questions or worries. I wish you the best. I have faith you will be ok😊
Yes I would be a average persons red platelets should be around 50. I am on chemo medication as I have pv and jak2 positive. My count was 1000 but now its down to 550 .x
Your platelets are not very high and hopefully are being kept low by the baby aspirin, but as you are concerned might be as well to continue monitoring. Keep an eye on your weight and keep fit - helps to keep platelets down. I have ET and JAK2 and take hydroxy. My platelets are coming down a bit but hemo would not reduce medication so I keep hoping. Unless your platelets go much higher I would carry on with the aspirin if you feel well and do not have other symptoms. try not to worry and hope you are ok
Thank you for your response. I'm honestly more concerned since the hemo told me my platelets are high because of my heavy cycle. However, I have not had a cycle for almost two years, so that reason just doesn't make any sense to me. I also give blood and have been wanting to do so for the past few years. I'm O+ and received an email recently stating that they are in need of my platelets. With my platelets being high, I would especially love to donate them. However, I read that I cannot if I have an MPN. I just want to know the reason for the platelets being high and if I'm one of those people that just has high platelets, I will gladly donate routinely. I feel more concerned with the unknown. I am definitely not a worry wart unless I don't know what's going on and right now, I just don't know what's going on.
you have some genuine concerns which need to be clarified by your consultant - or maybe GP. Best wishes
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