Is it possible i artificially lowered my platelets to 446 (normal high range), by drinking water before blood test?
I am not diagnosed yet with ET but my hands are red and painful after touching objects... new symptom. i am suspecting erythromelalgia but hematologist said i’m far from it and he is stubborn it’s not it.
I am going crazy :((( sitting here waiting for answers and nothing fits anything, worried i might be compromising myself with time passing by and no therapy or diagnosis yet. :((
Yes well dehydration would artificially raise your platelets so if you were well hydrated you probably have an accurate reading. I know it’s hard feeling like you have something wrong with you and you don’t know what it is. I hope you figure it out.
That’s crazy!!!
I don’t even fit ET now with the normal high plt and inconclusive jak2.
No idea what’s going on :((( somehow i feel like 450 plt barrier may be not that accurate.
I would suggest not sweating exact numbers. Even if you do have ET, sanitizing lab values has no real value. The "normal" range varies from lab to lab, anywhere from 389 to 450. There is no statistical correlation between risk of thrombosis and platelet levels at a certain level per some of the research. Risk calculation is more complex then that and has to do with more factors than platelet levels alone.
At the levels you are at, treatment would likely be aspirin-only unless you are in some way symptomatic (thrombosis, hemorrhage, splenomegaly, etc). Hopefully you will get more definitive answers ASAP.
Did you find out whetehr the doc ran the other genetic tests (CALR, MPL) ?
He wants to first run the jak2 for a third and fourth time before anything else...
I am guessing the doc is thinking your JAK2 mutant allele burden is hovering right at the threshold for a positive. That could be consistent with platelet levels hovering at the threshold; though it is a bit more complex than that. Hope you get answers soon.
Very bizarre, haven’t found one person in researches with lower than the threshold with ET, or that their Platelets lowered naturally under the threshold if they supposedly have an mpn.. even the professor mentioned on the list here thinks i don’t have an mpn.
I think i’m the only one thinking they are wrong.
There are people with the JAK2 mutation who are asymptomatic. There are also people with ET who are triple-negative for gene mutations. There are also people who who have thrombocytosis, but it is secondary. Age potentially also impacts this. MPNs are complex rare disorders where sometimes people just do not fit into one of the "normal" diagnostic groups. Colloquially call it MPN-NOS (not otherwise specified)(not its real name).
So long as you remain asymptomatic, I would encourage you to not worry too much about it. Taking a wild guess they have you taking low dose aspirin already, which may be all you need for many years. I expect you have already discovered the importance of avoiding the more histrionic sites and stick to reliable, informative sources. If you are interested, here is a presentation on ET by Dr. Spivak, one of the leading experts in MPNs youtube.com/watch?v=hbVr9u3... . He was my consultant prior to semi-retiring.
As you may recall, I was diagnosed with ET over 30 years ago. It progressed to PV about 7 years ago. One of the most important things I have learned is to focus on controlling what I can control to deal with the MPN. To the best of my ability, I let go of the rest and do not worry about it. I have applied that to some of the other interesting and unique health adventures I have had of late. It is absolutley key to maintaining sanity and quality of life.
ALl the best to you. DO let us know what you find out.
I am not taking anything, my hematologist refuses since i am not diagnosed yet.
I will let you all know what they will diagnose me with, for the sake of other weirdos like me 
Read this paragraph under "jak2 in health and disease" - maybe that might be me?
books.google.co.il/books?id...
Well you are hardly any weirder than all the rest of us MPNers. I think that you fit right into the club no matter what your diagnosis is. Hopefully you will know the answer soon. Interestingly, Dr. spivak touches on some of the issues noted in the section of the book you referred to. Truly understanding this though, requires a solid understanding of genetics, cellular biology, biochemistry, proteomics, and basic physiology. I am starting to think I am going to have to go back to graduate school to really understand all of this the way I want to.
So to answer you question, sure - that could be you. How things will unfold over time only time will tell. Until you get it figured out - best to focus on the things you can do something about. All the best to you.
I always drink at least a litre of water before my blood tests as it pumps up the veins. Was given this advice by phlebotomist. Also told to drink plenty of water by my haematologist but I am on HU.
Hope you get sorted out soon. X
In fact the reverse is true. As rebeccaxxx points out dehydration could ‘artificially’ raise your platelets.
Keeping hydrated is really important. Therefore if you drank plenty of water before your test and were well hydrated you’d get a lower reading.
Neither reading is ‘artificial’. Both readings are accurate. But it shows the effect of hydration / dehydration on blood counts.
That’s why for anyone with high platelet counts hydration is really important.
Thank you for raising this. Maybe that’s why my platelets hover
Have you had other tests done? Ie x ray glands checked spleen scan other blood tests?
Maybe that’s why mine hovered too above 450 in the past and caused me this mess, i used to go very dehydrated to tests.
I answered your questions at the bottom.
Sorry I didn’t see the Reference to Jak2.
I’m CalR ET. Scientists think that in due course they may find other mutations too.
Some people are negative to all known mutations. I do hope you get answers soon.
I assure you, once diagnosed what ever the outcome you will feel relived.
I know.. with my plt level at the moment it’s under the mpn threshold which complicates things.here i thought it was going to be easy!
Do you have a record of other blood tests? Before diagnosis my platelets were consistently below 300.
Yes, my platelets always hovering around 450 for more than 10 years. Nothing changes 
Oh bother that doesn’t give you room for challenging the heamo.
I do hope you condition is thoroughly investigated.
I know how you feel regarding not diagnosed yet. It took over two years to get diagnosed for ET. I had so many tests scans etc.. The news came just at the beginning of lock down and my haematologist advise not to start treatment as it will lower my immune system. So here I am with platelet count of almost 800 and no treatment. As for hydrating before blood test, I also had the advice to drink plenty of water before tests. If it was to alter your results you would have been told surely. Good luck Winterella and stay positive
Isn’t it dangerous to have 800 without treatment? I would ponder upon his judgement...
Ive been put on aspirin, so Ill hope for the best!!
Having Bone marrow biopsy will tell you if you're having ET etc
I talked with one of the mpn specialists on the recommended list on this website, a professor, she said that 446-470 is within normal platelets skew for labs and she wouldn’t even bother checking jak2 in my case, meaning: she doesn’t think i have mpn.
Now i really am truly confused.
My hematologist is checking anyway but i get the feeling he is checking for other reasons too like autoimmune diseases
And familial thrombocytosis once he saw platelets drop to 446...
For whomever asked: yes i was well hydrated before bloodtest, in the past when i wasn’t my plt went up a little,
Also yes my spleen came back normal and all other tests as well 
he doesn’t want to send me to bone marrow biopsy yet.
This is a long play game. Fortunately, you're aware of your platelets which are at pretty low level at the moment, you can watch them and act accordingly. It's very important to calm down because stress makes things worse, advice from my own experience. My platelets spiked from 650 to 820 after BMB and lots of stress. They came down in a few months after this and were hovering between 580-820 since then. After a year of research, I started Pegasys injections and they returned to normal level.
Yeah i kind of distressed in the past days.
I am baffled, plt dropped today further to 423... waiting for jak2 third and fourth (twice before it was inconclusive)...
How the hell is that possible...
A week to go till 1st August
Waiting for lab results for jak2 mutation been 9 days heard it could be 3 weeks. Feel like I'm going crazy.
I’m still new to this forum
Second Pegasys injection and I’m weak as a kitten!
I’m new and so pleased that this organisation exists.
