ET Fluctuating Platelets

[eastwood1932]

I wonder if anyone has experienced this. I was diagnosed with ET in 2011, was on HU then Interferon then back on HU for the last 4 years. Since April this year my platelet levels have been fluctuating and my heamatologist does not seem to understand why. My readings are 12/4 452, 19/4 330, 12/5 516, 21/5 208 and 9/6 363. There have been no infections, injuries or changes in my other meds. I don’t know if this is unusual or not. Does anyone have any advice please

[GardenGal3]

They seem like very low numbers to me. I'm routinely in the 700s and only get checked every 3 months. On HU only. Numbers fluctuate a lot for me, but the higher levels of platelets are just fine with my CALR+ version of ET.

[eastwood1932 in reply to GardenGal3]

As I have a history of clots in the past my target platelet level is 450 or below, don’t know if the genetic mutation makes a difference, I am triple negative. There is still so much we don’t know about this illness isn’t there

[GardenGal3 in reply to eastwood1932]

Yup! History of clots would mean you have to have lower levels of platelets. I'm fortunate to have been diagnosed during a routine physical years ago, with no symptoms. After 10 years with ET, and lots of soccer/football games later I'm still feeling really great.

[GardenGal3]

Triple negative at this point also may mean in the future a mutation will be found for your particular case...

[GardenGal3]

Triple negative at this point also may mean in the future a mutation will be found for your particular case...

[Smudger0122 in reply to GardenGal3]

Hi Gardengal,

I to am Calr+ how long have you been diagnosed with this?

Do you suffer with any ET symptoms?

My highest count was 1665, now on hydroxycarbamide and down to 428, which was up from 330 last blood test.

Do your platelets fluctuate at all on HU?

I am male and 45 years old.

Sorry for all the questions, no rush to reply. Enjoy your Sunday evening.

Thanks

Mark

[GardenGal3 in reply to Smudger0122]

No ET symptoms, never have had any. Highest count I think was 800 or so. Platelets fluctuate between 500 and near 800, but checked only every 3 months. Female and 65. CALR+ only found out about by an MPN expert a few years ago. Other hematologists did not find the mutation and at first thought I was JAK2+, but then said that "disappeared". One guy was really nervous that my count was high and fluctuated. I now know that with CALR+ a higher count is OK, since clots are much less likely. I count my lack of symptoms to being athletic my entire life. Softball as a child and teenager, and soccer/football ever since. Play in many tournaments even now, still a quick and agile midfielder (certainly for my age).

[Smudger0122 in reply to GardenGal3]

Morning Thank you for your reply, I to had no real symptoms at first. I was fit and busy, was my brain tumour discovery that highlighted my platelet count.

Unfortunately anxiety can also mimic ET symptoms, so been hard to work out whats been causing the symptoms that I have had.

As before my life changed with my health conditions, I had no symptoms of anything.

Hardest part is accepting this, and adjusting to a new normal. Which I am slowly achieving.

Keep safe and thank you.

Smudger

[hunter5582]

I had ET for about 22 years until it progressed to PV about 8 years ago. My platelet levels have always varied widely. Usually by abut 200K. Most of this time I was not on cytoreductive treatment. Usually when on meds the variance is not as big.

Perhaps consultation with a MPN Specialist is in order of you have not already done that. I would consider doing a full Myeloid Panel (genetic test) to look at non-driver mutations and recheck for driver mutations. This is one example of that kind of panel.

files.labcorp.com/labcorp-d...

Hope you get answers soon.

[eastwood1932 in reply to hunter5582]

Thanks for your reply, Heamatologist has booked bloods to be done in 4 weeks and if results are not stable I think, yes, I will ask that either he consults with a MPN specialist or refers me to see one

Thanks again

[heathermc]

Was diagnosed 8 yrs ago ET and Calr positive.. my platelets are stable at last 366. I am on treatment HU and angralide..for the last three yrs and my.platelets before treatment 1775.. I'm.now stable around 290 to 450 and they do vary depending many factors .I've had a ruptured anyeurism and had a bleed on the brain 16 months ago ..a few weeks after having my.covid vaccine .. Astra zenica..I can't say that's what caused it ...at all but I remain suspicious .

I'd never been admitted to hospital before and never had surgery .. very scary times..my platelets were low and have been since then ... I have a few symptoms of ET but it's mainly fatigue ..and headaches sometimes

[gset]

I had similar fluctuations on HU and my haematologist at the time did a lot of knee jerking with the meds, however when he retired and I went to a MPN expert they told me that some people go up and down like this, so since then I don’t worry and look at the trend over time instead. It might be worthwhile asking if your haematologist doesn’t understand to get a second opinion if you are worried?

[MaggieSylvie]

My haematologist told me that our platelets fluctuate daily. If you had tests more often than three months you would see this. Fluctuations can be caused by all sorts of health and life-style things - pain, sickness, stress, anxiety and a lack of any of these things. It is normal for everyone, with or without ET. If you feel ok, don't worry about it. Your readings are not too high.

[Cja1956]

Platelets are always going to fluctuate. It seems to me that your hematologist is doing a good job since yours are pretty much within normal range. I’m post Et Mf and my platelets fluctuate between the 600’s and 800’s Et with low red blood cell counts. So, if I were you, I really wouldn’t worry too much.

[Solyesh]

To my untrained eye, with the exception of perhaps the 208 reading, your results seem to more or less fall with in the 100-150 cycling my MPN specialist says is normal and tells me not to worry. Et Jak2+ here - and prior to cytoreduction (first HU and now Peg) I definitely had wider variances in my platelet counts (they would swing 200-300 points per reading (6 weeks apart) and ranged from about 729 to 1,400. Once I started cytoreductive therapy they have been fairly stable in the uppers 500's (my target being 600).

[Anag]

I don’t think you have something to worry about. I’m a real jumper. One month I’m at 550, 5 weeks later at 820, up to 900 then sit for a while at 690. this is why I get checked monthly. I was sitting at 670, when my daughter Landed in the ER. Well, I went to the hospital the next day and I was at 830. Everyone’s platelet fluctuate during the day. If you do 2 blood tests you’ll have 2 different reading. Stress plays a very big role for many of us. Also, perhaps you’re eating many good high in Vitamin K or papayas, sweet potatoes, liver, broccoli, kale and other dark green vegetables those raise thrombocytes. Yes. These amazing foods that are excellent for everyone else!!

I wouldnt worry. Just keep aware of these facts.

Hope to have helped!

Anag

[eastwood1932 in reply to Anag]

Hi Anag, thanks for your reply, a lot of people are saying fluctuations are quite normal which is a comfort. I watch my Vit K consumption as I am on warfarin and a Vit K will effect it. My concern was that for many years my platelets have been so stable so this is quite a change for me, but hopefully is, as you say, nothing to worry about

[Anag in reply to eastwood1932]

Could it be menopause? And really big stress in your life? Any change at all? I always look for triggers. 🙂 all The best!