Answers on a postcard please!

[Carthe]

thoughts… if tests come back negative for any genetic faults and platelets are upper range but normal what would you do? Last one yesterday 436…highest has been 465….. More tests? I have No symptoms or ‘other’ symptoms? Age,46…

[hunter5582]

I would suggest consulting with a MPN Specialist directly to be sure of the correct answer. You would want to be sure about the distinction between primary and secondary thrombocytosis. mpnforum.com/list-hem./

[Carthe in reply to hunter5582]

thanks hunter5582 I’m not sure what you mean though? Sorry? Are the results I’ve shared for platelets not upper normal?

[Mostew in reply to Carthe]

Your platelets are slightly above normal. But not concerning ly so . Your MPN specialist will be monitoring them. Maybe you could ring haematology nurse at the hospital. If yours are as lovely as mine you may find it good to discuss your worry with them . Have your hospital no. Ready when you ring.

If your next Consultant appointment feels to long to wait , email them .

[hunter5582 in reply to Carthe]

Diagnostically, anything over 450 is what would be considered thrombocytosis. High-normal findings are not diagnostic for ET. A single read over 450 would not typically be diagnostically significant. I recall you have been concerned about your status. My suggestion is that if you remain concerned or if you have a trend that is over 450, then consultation directly with a MPN Specialist would be a good idea.

[Carthe]

hi mostew I haven’t been diagnosed yet - what’s do you consider normal range?

[Mostew in reply to Carthe]

There is a difference of opinion as to what is ok re. Platelets It's dependent on many things . That's why you need to have an appointment with MPN consultant, if your gp thinks it is An MPN .

I hope your GP is listening to your concerns and ruled out other reasons .

Meanwhile work on limiting stress levels as best uou can

[Ebot]

Hi there. To give some context to the idea of ‘high’ platelets perhaps I can share my experience?

My elevated platelets were first picked up quite by accident when I was going through some tests for something completely unrelated. I think they were around the 450 mark when they first got red flagged. No one was unduly concerned but my GP followed up with a repeat FBC a couple of months later. They’d risen again probably to around 460. I brushed this off as I’d had an infection. Another FBC a couple of months on and they’d risen to 480. At that point my GP put her foot down and referred me to a haematologist who ran the gamut of MPN tests and scans and it turned out I was JAK2 positive. (My platelet number continued to climb with each FBC.) The haematologist then referred me on to Prof Harrison at Guys.

I was put on baby aspirin and for the most part my counts remained stable around the 550 / 600 mark for a few years. Then they started to climb again until they plateaued out around 1100. Some years down the line my HCT also started to rise. A second BMB changed the diagnosis from Unclassified MPN treated as ET to PV. I then had regular venesections for a while but not surprisingly the platelets began to climb again. They hovered around 1500 for a while but when they hit 1700+ I decided it was a no brainer to start drug treatment.

Platelet counts fluctuate. I think most of us will have experienced differences of perhaps 100 plus or minus (once you get to the bigger numbers!) between blood tests in otherwise ‘stable’ counts. All kinds of things can cause fluctuations. The key thing is the trend. Are they showing a consistent climb? So given your numbers recently have hit 465 and then have fallen back to 436 is reassuring. Although your counts are at the top of the normal range, in MPN terms they’d be a brilliant result for many MPNers!

I think you said you’re waiting for tests to come back which might give a clearer indication of whether or not you might have ET. Celebrate the fact that you have no other symptoms and that your platelet count is normal / very slightly elevated. These are really positive things. It really may ‘be nothing’. And if it is ET, it is eminently manageable.

It is a very unsettling time - we’ve all been through it, we get it! But perhaps focus on managing your anxiety and stress which you say can be a challenge for you. That will really help you to get through the next few weeks and to deal with the outcome - whatever it is - going forward.

You really aren’t alone. There will be plenty of people on this Forum who will identify with what you are going through and the particular chronic anxiety you face.

Wishing you all the best. Let us know what the haematologist says.

[Carthe]

I really appreciate your reply! It’s been another horrible nights sleep so I’m glad to wake up to this, thank you. X

[Ebot in reply to Carthe]

Glad it helped. To answer the questions you messaged me with (since you’ve asked publicly elsewhere and they might be helpful to others) …

The numbers game is a bit inexact. Some docs will consider 400 the upper limit of platelet normal range. Others 450. My experience at Guy’s has been about aiming to get the platelet count under 450. Certainly 450 is the number I hear talked about most.

With regards to the effects of stress and hydration on platelet counts. We know that stress, especially chronic stress, can have a serious impact on many aspects of our health. Anecdotally at least, MPNers believe that stress does affect how they feel and how they manage their condition day to day and may affect their numbers. However, I don’t know whether there have been any studies on this. No doubt if there are, someone will post a link!

Certainly hydration has a huge impact, not just on how we feel (particularly energy / fatigue) but also on blood counts. Dehydration can push up platelet numbers. (Which is one of the reasons why the trend rather than fluctuations in numbers is what matters.) Definitely good to keep well hydrated. Which reminds me …!!

[Carthe in reply to Ebot]

thanks I am interested to know what people think about the impact of chronic stress on platelets… also what’s your story ebot - if you are happy to share? How long have you been diagnosed etc.

[KLCTJC]

do you smoke or have sleep apnea? Sometimes it has a secondary cause, but would talk to your doctor

[Carthe in reply to KLCTJC]

nope don’t smoke and no reason to believe I have sleep apnea - how would I know?

[KLCTJC in reply to Carthe]

People who have sleep apnea usually wake up tired, snore, etc. just another secondary cause. If you think it is possible talk to your doctor about a sleep test. Just a thought

[Carthe in reply to KLCTJC]

and a good one! My husband says I snore and sometimes I say up panicking / breathless in the night… I am def tired when I do wake up… I’ll def ask! Thank you x

[Exeter21]

Carthe if you have no diagnosis yet & all this worry get Dr to refer you or even email Professor Harrison at Guys London . But your nearest hospital has a Haemotology department I should imagine . Ask Dr for a referral for more blood tests as none of us can guess what you have. Mine were 490 by the time I saw Haemotology & confined ET. However Dr did not refer me I asked when I managed to find my nhs records 👍.

[Carthe in reply to Exeter21]

thanks exeter21 I don’t expect anyone to guess what I have just trying to learn from experiences and gain some knowledge. What other tests can they perform? I have had them all… now waiting for genetic ones. All the others are fine for autoimmune etc

[Ovidess]

I had platelets in the high 400s to mid 700s for decades (without strokes or known clots but with visual migraines) for decades before doctors sent me to hematology/oncology for tests. I guess blood science and attitudes toward such aberrations have changed dramatically since I was young. I definitely followed my counts carefully every year, making sure a new doc knew of the situation. I am now in my mid 60s and just started on Besremi this January, as my platelets finally soared toward a million and hematocrit numbers were also too high. (ps, ask for answers on a twenty dollar/pound note next time, more lucrative!! "the car guys" taught me that !)