Platelet number fluctuations

[Kristytyler]

Does anyone see their platelet numbers fluctuate? Like jump down or up 100k in just 3 weeks with ET or any MPN??

Also, does anyone have high ESR SED with ET?

Thank you

[paintbox]

Hi Kristy Tyler,

In a word, yes!

Since diagnosis Nov 2018, when my platelets were 739, they have fluctuated up and down: highest just under 900 and lowest my June levels of 670.

I also have blood results for the 10 years prior to ET being diagnosed (this is another story of going back again & again with chronic fatigue, aches, vision disturbance, dizziness etc) where platelet levels were: 485, 413, 390, 421, 278, 445, 518, 522, 509, 596, 648 & 739 at diagnosis. So, all in all, it would appear that despite elevating levels over the last 12 years, I'm pretty stable most of the time.

Curious though that my levels have decreased this year. Had a really good telephone appointment with my haematologist yesterday & he's pleased levels have not continued to elevate as they had been at the end of 2019 & start if this year.

What sort of changes have you experienced?

I've not had any tracing of my ESR SED btw.

[Kristytyler in reply to paintbox]

My platelets were slightly up 452 then 515 now back down a month later to 405. Still waiting on my ET gene mutation lab work to come back to verify if I have. But doesn’t look like I have a anything else. No reactive thrombocytosis, waiting on ET diagnosis until my labs come back. My ESR has been going up though. Just scared with this all

I get headaches, dizziness a lot and fatigue. But my doctors never acknowledge those symptoms, they disregard them, and it’s aggravating.

[paintbox in reply to Kristytyler]

Yes it must be scary for you not knowing and it is certainly deeply frustrating when expressing to GPs about symptoms which adversely impact on our quality of life that are then dismissed. Sometimes medics see only the clinical condition and not the human story attached to it. The nomenclature of the condition strikes fear too but, although it's not to be underestimated, it is also a cancer with which we can hope to expect a normal life span.

My advice is twofold:

1) keep demanding acknowledgement of these symptoms (stress their impact on your life) & push for answers & referrals to someone who will know more (so an MPN specialist). I changed doctors surgery in the end and now my GP is fantastic. He said to me that because I'm so rare few professionals have a true understanding so will pass the buck to me, blaming me with their lack of knowledge & therefore:

2) educate yourself about MPNs and ET if that should turn out to be your diagnosis. I feel more confident now than I ever did about my condition, partly as I have a wonderful haematologist who is kind, measured, clear in his approach to my treatment and accessible when I need him. I feel very fortunate after years of dead ends, so don't give up!

It is a scary time not knowing but do take comfort from the fact that you have begun that journey with some knowledge; your platelets are (in MPN terms) relatively stable and gene mutations are being tested for. The symptoms are sometime very debilitating. Sadly for me I was fobbed off and began to think that I was reacting to a series traumatic events and wasn't managing my life! As a consequence I pushed through but felt bad about my lack of focus, brain fog, joint pain and fatigue etc.

When I was finally diagnosed I was actually relieved that I wasn't going mad and there actually really was a medical reason for how I'd felt for years - it was then only at this point I discovered my platelet levels 2009-2018. So in a way you're a step ahead and know there's a reason to keep pushing for answers.

Stay strong & stay well. Keep us posted how you get on.

All the best.

[Kristytyler in reply to paintbox]

Thank you for much, I appreciate your advice greatly. And hope all is well too. Keep in touch!

[paintbox in reply to Kristytyler]

It's a tough time but you'll get through it. I got great help here when I needed it most so you're never alone!

[Wyebird in reply to Kristytyler]

Hi, I’m no expert but I wouldn’t have said that your platelet fluctuation is a huge problem. As the rise and fall is not that great. That happens to me.

I’m being monitored about every 5-6 weeks. Meds adjusted accordingly. I was diagnosed 4 years ago - CALR et.

Your symptoms do require acknowledgement though.

If you follow these posts you will notice that we all have different thresholds. I can’t tolerate my platelets above 425. Prior to investigation I was so lethargic I bought an iron tonic. When I came off an aspirin (taken for another medical reason )equivalent for 10 days ready for a minor op I was lightheaded . Others are symptom free with platelets much higher.

Your blood is being investigated now. Hang in and question your symptoms results.

Good luck

[Hidden]

I have ET and I have had differences of 300-400 within just 1hour with 2 blood tests taken at the same hospital, on several occasions.

Not sure how accurate some of these tests are🤔

[gset]

Mine cycled up and down like that, I put it down to work stress

[john0084]

I've just had my review and mine have dropped to 140,000 from 590,00 in last 6 weeks, previously they increased my hydroxy from 7 to 9 now there low I'm back to 7. My nurse thinks I'm just very sensitive to an increase in the hydroxy. I have pv diagnosed 2 years ago. I've also had 2 venesections during lockdown, but that's cause my hb was near 50 but not connected to platelets fluctuations. Confusing ,cause I feel really fit and well.

[Wyebird in reply to john0084]

Hemoglobin-50

How did you cope?

[john0084 in reply to Wyebird]

Sorry brain lacking, should of said haemacrit was .50 I'm not as sharp as hunter! He's a good bloke to know

[Wyebird in reply to john0084]

Haha I’m not the only one then. The one good think about our MPN IS a good excuse for getting things wrong. Blame it on the brain fog x

[Kristytyler in reply to Wyebird]

I get brain fog too, is that normal? And poor memory

[Wyebird in reply to Kristytyler]

I’m afraid so.At times I have trouble concentrating. Someone posted a really good article explaining why.

[Kristytyler in reply to Wyebird]

I hate the feeling :/

[Wyebird in reply to Kristytyler]

I’ve just looked for the article someone posted. I was so impressed I printed it.

Unfortunately I’ve put it somewhere ‘safe’🙄.

I suggest you google mitochondria and MPN. Xx

[hunter5582]

Fluctuations by as much as 100K are normal per my hematologist. Single lab reads do not matter as much a trends over time. It is the average and trend line that matters. Do be aware that there a number of things that will influence platelet levels. Bleeding/inflammation/tissue damage can all induce reactive thrombocytosis. Iron deficiency can also drive up platelet levels.

If your ESR-SED (Erythrocyte Sedimentation Rate) is high, that would indicate inflammation. Bear in mind that MPNs are at their core inflammatory disorders. Dysregulation of the JAK-STAT pathway drives up the production of inflammatory cytokines. This is an integral part of the MPN and thought to be why we experience many of the secondary symptoms so common to MPNs.

Hope that helps. All the best to you.

[Kristytyler in reply to hunter5582]

So could ET cause high SED rate or could it also be high SED rate causing high platelets and fluctuations? So could be either.

I’m just so tired of the headaches, dizziness, panic attacks and aches, I’m only 33, it just makes me depressed feeling like this always, and not much treatment for it

[hunter5582 in reply to Kristytyler]

I think of is as all interrelated. The JAK2 (or other) mutation dysregulates the JAK-STAT pathway. Hemapoietic stem cells with this mutation have a clonal advantage and they start cranking out more blood cells than they should. The JAK-STAT pathway also regulated the production of inflammatory cytokines. It really is not a separate process - it is all the same, just more happening than just overproduction of blood cell lines. This is thought to be why we experience all the secondary symptoms that are so troublesome. Systemic inflammation really sucks! Note - it is also related to anxiety, insomnia and other similar issues.

[Kristytyler in reply to hunter5582]

So are at higher risk for covid complications since elevated already cytokines..

[hunter5582 in reply to Kristytyler]

They really do not know yet. It is a reasonable concern, but there is not data to support it. I would rather not be a part of that database.

[JenngeetingR828]

As you have been reading - Yes! Fluctuations are normal. Unfortunately - so is the response by some in the medical profession and perhaps it is because they are just not as aware of the symptoms of this rare disease. Many don’t have symptoms until their is an event that sends them to the hospital.

Like you, I did / do have symptoms. It took forever to find a Dr. that understood and tried to treat my symptoms. Keep pressing with your questions and keep searching for a Doctor who listens, and cares about treating those things impacting your well being. Once I was put in Hydroxyurea - after a few months I noticed a significant change!

Wishing you the best! We are here for you!

[Kristytyler in reply to JenngeetingR828]

Thank you for the feedback and support. I’m just so tired and depressed because of the frequent headaches, dizziness, brain fog, panic attacks, body aches, and no treatment for those. What treatment do you do to help your side effects? Are they similar to mine?

[AmandaLE]

Yes. I am PMF with MPL gene mutation. Monitored every 3 weeks. Platelets and wbc fluctuate but I am also taking Jakafi and that helps to lower counts.

[JackLina]

That only happened once with me when I first started Pegasys. ESR? SED?

[Mich10]

Hiya

I have ET and my playlets hover around 11,000, I really don’t like them being so high but nothing I can do about it. The consultant said that the blood count changes all the time......

Hope you stay well x

[Jsb45]

Hey There!

I have PV and my red blood cell count jumps around. I might go 6 months with it being stable, below the 45% level, and then for the next 6 months it is high evey time it is checked. Thre are so many factors that affect it, hard to say what it could be. I do know that proper hydration seems to be key to keeping it more stable.

Good luck and best wishes

John

[Bluetop]

Yes, my platelets went from 390 to 700 0ver a 3 month period and are rarely stable for 2 readings in a row. I have PV

[Meatloaf9]

My platelets have bounced around between 459 and 550 for the last 5 years. 70 yo male.

ESR one year ago was 0.

[Kristytyler in reply to Meatloaf9]

Do you know why the fluctuations? Do you have ET? Any symptoms with those fluctuations?

Are you in shape?

[Meatloaf9 in reply to Kristytyler]

I have ET. They tell me that fluctuations are normal from test to test (3-4 month intervals). I don't notice any symptoms at all except for occasional tiredness. We bike ride daily for 1-2 hours depending on the temperature so I would say fair shape.

[AndyT]

Those sort of fluctuations are not unusual, both as counts do vary and as the measurement of them is not exact. The same blood sample tested simultaneously on 2 different machines can give 2 different readings!

It’s the overall trend that matters - ie are your platelets and any other counts consistently going up or down over a 3/6/12 month period?

[Kristytyler in reply to AndyT]

Thank you for your feedback. Yes my platelets and ESR SED rate have both gone up consistently over a 12month period?

My doctor doesn’t think much of it, I feel like I need more answers. I always have headaches, dizziness, short of breath, panic attacks, body aches, extremely tired, I’m tired of it. Only 33

[JenngeetingR828 in reply to Kristytyler]

What really helps the headaches for me at taking baby aspirin. My dr. Has me taking two 81 mg a day.

[Anag]

Hi Kristytyler,

Mine have been jumping around much more Than yours. From 550-909 in a month despite meds. As my doctor (Haemo since 30 years) said, “I see some once a year because they are absolutely stable. Others (like me) have to come monthly, because they are jumpers.” It’s sometime a bit nerve racking. To check and see if my blood is too thick or thin, I purposely floss really hard on one spot in my mouth so that it bleeds. If it stops immediately, I up my blood thinners by taking more ginkgo. If it bleeds for 10 minutes, I reduce my ginkgo. When my blood is thicker, I get more absent minded and lose my balance a bit. Each of us have to pay more attention to subtle changes in ourselves. All the best. Hope to have helped.

Anag