Platlet count : Hi all... my platelets were 521 in... - MPN Voice

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Platlet count

Dazakella2010
Dazakella2010
38 Replies

Hi all... my platelets were 521 in March.... just had my bloods re done this week and they have reduced to 487. My symptoms have been worse than ever this week, does this Make sense? Lower platelets but I have felt terrible all week....

I was diagnosed E/T Jak2 + in April this year.

My haematology told me that aspirin does not affect your platlet count but I have read it lowers the count.

Kelly x

38 Replies
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Swede

Aspirin interferes with your blood's clotting action. When you bleed, your blood's clotting cells, called platelets, build up at the site of your wound. The platelets help form a plug that seals the opening in your blood vessel to stop bleeding.

But this clotting can also happen within the vessels that supply your heart with blood. If your blood vessels are already narrowed from atherosclerosis — the buildup of fatty deposits in your arteries — a fatty deposit in your vessel lining can burst.

Then, a blood clot can quickly form and block the artery. This prevents blood flow to the heart and causes a heart attack. Aspirin therapy reduces the clumping action of platelets — possibly preventing a heart attack.

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Dazakella2010
Dazakella2010
in reply to Swede

Thank you.... I understand what aspirin does but don’t understand why I’m feeling so poorly if my platlet count has gone down slightly. Can aspirin lower your platlet count?

Kelly x

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Swede
Swede
in reply to Dazakella2010

As far as I know,no.

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1466

Not sure why aspirin, I believe it’s for thinning your blood. I was diagnosed in January with ET. We are still in the learning process. The doctor says it’s a work in progress. I have never felt symptoms until possibly 3 days this week. I’m not sure if is ET causing it. fevers, chills and fatigue. If so it’s the first time. I had congestion also and went to the doc. They ran lots of tests but could not find infection. My platelets were 580 a month ago and dropped to 387 this week, in a month. I take 2 ruxo or jakafi daily. Has anyone experienced fevers, chills, fatigue with platelets at 387

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Petsch
Petsch
in reply to 1466

The problem is we do still get viruses and we blame everything on the blood probably just a normal virus

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Dazakella2010

I have had symptoms now for 15 weeks.... that's not a virus

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Petsch

Oh wow I didn’t realize that. I hope you can get to the bottom of this. Feel better soon

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stillkicking

Hi Kelly,

I am sorry that you are feeling so unwell. It is a very difficult time for you with the recent diagnosis of ET JAK2+ and headaches and other symptoms that have been troubling you for some time now. I wish that aspirin did help control platelet numbers as well as "stickiness" of the blood, as it would be nice to be able manage both things with this wonderful medication, but sadly it won't make much difference to your platelet numbers... however, it is a marvellous help for lowering the risk of clots and so on, and I am personally very thankful for it!

I see from a previous post that you will be seeing your haematologist again at the end of this month, and I hope that they are able to cast a bit more light on what is going on for you and how to manage your condition.

In the early months after my own diagnosis of ET, I must say that some of my most difficult times were trying to deal with the feeling of not being believed or listened to when I talked to my haematologist. I had a number of very troubling symptoms, but she seemed very dismissive of them, and brushed them off as "could be caused by anything"! I found this site very helpful, as I could see that I was not alone in experiencing the things that I did, and I also found out how valuable my local GP consultations could be, in that, whilst my GP knew almost nothing about MPNs, she did know me (from sore throats to piles!!), and would listen to me and give me the support that I needed when I felt very abandoned and frightened about what I perceived as very poor specialist care.

I have slowly come round to actually quite liking my current haematologist, and the one I saw first and "fired"! But I can see that they tend to be "numbers" people concerned with charts and graphs. The GPs I have seem better equipped to deal with the rough and tumble of my everyday life and hopes and fears.

Very Kind Thoughts to you all the way from New Zealand,

Peter

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Dazakella2010

Hello peter

Thank you for your reply... very kind.

I have in fact been transferred by my haematologist to St Thomas’s hospital in London, because of my age (39) they feel I need to be seen by a specialist... I’m awaiting a date for that at the moment.

I wS worries I was going mad as my platelets has slightly lowered but I have felt terrible this week?

Kelly

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Eadaoin

I have been under Guy’s/St Thomas Haematology for 19 years. You will feel great support there and be with doctors and nurses who are at the experts at the forefront of MPN research. They all take an interest in you as a person not just as a statistic. Best wishes for the future.

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Dazakella2010

Thank you so much... I just want to be heard and understood and at the moment under my current haematologist I don’t...

Kelly

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Notlikecandy

WHAT is your hemoglobin & hematocrit?? My husbands in USA is 58 hematocrit & his hemoglobin is 20. (smoker)

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stillkicking

Hello Kelly,

"Going Mad?" definitely not! :-)

The symptoms you are having are real and a problem for you.

Regarding platelets and symptoms, that is far more difficult to unpick and I think that medical opinion is fairly divided as to whether or not platelets in themselves actually cause symptoms, or if they do, at what level this is likely to occur. I suspect that the answer to this is very complicated and probably involves other things concerning blood chemistry in addition to platelets, and I can see the difficulty for the boffins in their white coats in determining what causes what.

My first haematologist, the one I "fired", told me that I would not have any symptoms from platelets unless they were well above 1000 or 1500.... however I do know that in my own case I had very definite symptoms when my platelet levels were in the 600s, and aspirin was an almost immediate help in alleviating these. ( I had vertigo, visual migraine and nasty "pressure" headaches, in addition to what I suspect was circulation problems in my legs).

The point is that you do have headaches and feel so very unwell, and I am very pleased that you have been transferred to St Thomas's hospital. I do hope you are able to get an appointment soon for that, but in the mean time do keep your own GP updated with how you are feeling, you do need that support, and it is a good idea to have your medical "ups and downs" on record too as it will help the specialist have a bit more background information to assess how you are.

Best Wishes,

Peter x

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charl17

The primary purpose of low-dose aspirin is to prevent clots but some people get symptomatic relief as well.

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Chez1947

I was diagnosed in March with PV JAK2+ and my platelets went up to 535 and my doc put me on a low dose of Hydroxy and have to have another blood test in 2 weeks. I think the normal platelet count should be between 150 and 400, The rise in my platelets didn't make me feel unwell.

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SueWhelan

Hiya, I have no medical or technical reason, but I can get symptoms despite my platelet count, which has been sporadically anything from 250 to 1600 over the last 2 years since diagnosis (ET currently on pegalated interferon after trying everything else. I don’t take aspirin). I have been, for example, 450 and completely fatigued and much higher than that and not so tired (I’m always tired on some level 🙄).

I’ve often wondered if is related somewhat to my diet and fluid intake? I haven’t monitored it so don’t know for sure?

Take care

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Dazakella2010

Thank you sue

I will monitor this also

Kelly x

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Tico

Hi kelly, as swede as said,aspirin effects the clotting of the blood,making the platelets less likely to clump and stick together. Only drugs drugs like hxdrea, anagrelide and pegylated interferon, etc will usually lower your platelet count. The answer to your question is yes you can still suffer with symptoms when your platelet count is lower as i believe it is more about the quality of your platelets and sometimes not all about the quantity,in other words the maturity of the platelets and the level of platelets defective. Their are a lot of people who are diagnosed with very high platelets and no symptoms whatsoever, so having high platelets does not alway's correlate with the symptom burden. Atb, tina.🤗

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Dazakella2010
Dazakella2010
in reply to Tico

Thank you very much.... this has helped me understand now.... I’m not going crazy 😜

Kelly x

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shiftzz

Sorry to hear about your issues..I am 62 years old, PV JAK2+, my original platelets was 1162, hct 0.612, I felt bad. On Hydroxy , venesection, aspirin and now on Pega, Hydroxt reduced from a max of 17 pw to 5. My understanding is that my symptoms , will not really go away, but they manage the risk... My current numbers are Plateets 230 hct 0.453 (target 0.45) even at 0.453 my consultant insisted on a venesection, my 55th... It could be that my symptoms may never get a lot better, besides I no long have mega hot flushes, I know I dont offer much help, but they are more concerned about the risks..

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hunter5582

521 to 487 is not a significant change. Might even be in the realm of what the accuracy of the lab is. Certainly not enough to make a difference you would notice. As indicated by others, the aspirin would have no effect on levels. What you might want to consider is the JAK2 part of your profile. The Janus Kinase signaling system affects more that just the production of platelets. It also increases your body's production if inflammatory cytokines. The increased cytokine load is thought to be responsible for many of the secondary symptoms we all experience. There are a number of published research article on this. Here is just one ncbi.nlm.nih.gov/pmc/articl... . Unfortunately many docs are not up-to-date on this and may be dismissive of things they do not know. Suggest doing a little research on your own so you can be better equipped to participate in your own care. FYI - if your doc has not already checked - you will want to know what your JAK2 mutant allele burden is. Test is called JAK2 Mutation Quantitative Analysis. Short version is that if the allele mutation burden is less than 50%, you have a more benign/favorable course of the illness. All the best to you.

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Dazakella2010

Thank you so much...

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Chaz1

I feel your pain (although as an outsider) hubby have ET/PV & as always there's is a magic number for things & often his symptoms can be really bad but his blood count is not sufficient for a Venesection. These are the days I go home & cry (or cry while driving him home). Blood counts are not a reflection of symptom burden but particularly being in the younger category that is all that is focused on. I think you just have to be really strong & a specialist will help. No one wants to start other interventions but you do need a good quality of life. Hope referral goes well x

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Dazakella2010
Dazakella2010
in reply to Chaz1

Thank so kind x

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Anag

Hi Dazakella and welcome to our group! Platelets in some people (like me) go up and down. I take Anagrelid and am stable around 550. sometimes 470 and sometimes 670. I had a TIA 18 months ago and ended up in the hospital with 823. I went in for the diagnosis just 6 days later and was at 909!! Iowas diagnosed with ET CALR. Felt stronger, but was scared. Stress plays a role. Wishing you all the best.

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Dazakella2010
Dazakella2010
in reply to Anag

Are you E/T and jak2 +?

X

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Anag
Anag
in reply to Dazakella2010

No, ET CALR. About 15% of habe habe my type. We have stronger tendency to bleeding.

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Dazakella2010

Hi thank you...

yes my platelets have been up and down since March 2018 and no one picked up on it until I had this headache... which I have had constant now for 16 weeks this week!

Kelly x

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Searcher56

Are you taking anything else other than aspirin? If my platelets were 521 without HU I would be overjoyed. How would you describe your symptoms? They may have nothing to do with ET. I see ET to be a symptom rather than a cause of something else. What that something else is I am still trying to discover.

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Dazakella2010

I have E/T and jak2+ my platelets have been up since March 2018.... as someone said before it’s not the raise in platelets but how the cells actually are in your bone marrow.

My symptoms are extreme tiredness, sickness/vomiting and a constant headache for 15 weeks....

Everyone’s body is different and handles things differently... I think mine have been up and down for so long it’s now having an impact on my body...

I am only on aspirin

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JackLina

So might it be the aspirin causing the problems? Personally, I cannot take aspirin due to negative and painful side effects. Here are some hugs for you. Hope you soon feeling better. P.

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Dazakella2010

Hi

I have only been on aspirin for the last 7 weeks.

Thank you jack x

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johoho

Hi, apologies if you have already answered this question, it's a long thread to look through. You don't mention your other counts? My health tends not to be influenced by platelets, but certainly by my PCV and my ferritin levels (I'm PV not ET). I suppose the other thing I remember about the early days post diagnosis (when I put every symptom down to PV) is being told by my haematologist that I will still get the ordinary everyday illness/under the weatherness as other people do. Jx

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Dazakella2010

Hi jo

My others counts? X

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johoho

Sorry, it's probably my ignorance about ET. We're both Jak2 but I have PV, for my other blood counts are all considered. There are some really great responses on here by people who know what they're talking about (unlike me). Also, great news that you will be seeing n MPN specialist at St Thomas. Im certain that will be hugely beneficial for you xx

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Lynette1

Hi Dazakella, just to maybe make you feel a bit better, yes 521 platelet level is higher than it should be, but my doctor was "pleased" when my platelet level got to that after it came down from over 1,000. Have you been told to go on Hydrea? I only went on it when my platelets got to over 800, before that I was having venesections. Good luck, it's not all bad and you learn to live with it. :-)

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Dazakella2010

Hi.... My haematologist has referred me to st Thomas’s hospital because I’m only 39... I’m just waiting to hear now x

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Lynette1

Hi Dazakella, yes 39 is young, I am 69. I am in Australia. I freaked out when I was told that I would have to go on Hydrea but actually it's not at all bad and I don't seem to have any side effects. It is a bit "annoying" to have to take so much care about the being in the sun and I do miss just being carefree about taking in the sunshine (especially here in Aus). Good Luck. :-)

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