Hi everyone, I’m a newbie to the group, a 49 year old very anxious female in the UK.
My GP picked up on two separate high platelet counts during two routine blood tests this year to monitor my under active thyroid gland. He then proceeded to tell me that having looked back at my records I had another two higher than normal levels back in 2005 and 2017. My GP’s laboratory has a cut off point of 450,000 My readings are 2005 - 511, 2017 - 488, April 2021 - 569, October 2021 - 589, December 2021 - 549.
I pointed out to my GP that on every single occasion of these higher than normal readings I had got another issue going on... For 2 readings a sinus infection, 1 reading Gastritis flare up, 1 reading Covid Arm (swollen and rash from jab), and the last reading taken after antibiotics for another sinus infection. Therefore the jury is out at the moment as to what my “real readings” are rather than maybe elevated due to other ongoing issues.... My GP is currently monitoring every 2 months for the next 6 months before deciding whether I need referal to a Hemotologist.....
I suffer from terrible stress and anxiety and so after reading all about ET on Google I’m ashamed to say that I’ve got myself into a right state... I know that I’ve not yet been diagnosed but I’m feeling so confused by it all. My GP says that lots of things need to be taken into account such as fatty liver can cause someone to have higher than normal platelets (I have mild fatty liver) so I think it could may well be a long process of tests and waiting etc which I know you’ve all had to go through....
My question is this though.... I understand that “trend” over time of platelet counts is looked at aswell as numbers... My counts are questionable at the moment as explained above but in looking at them as it stands I have a count of 511 taken in 2005, my last count is 549 taken a few weeks ago in 2021 so in the space of nearly 17 years they’ve hardly altered? Is this a normal sign of ET or would progression have been more likely in that time period?
I know no one can look into a magic crystal ball and give me a definite answer, that will be up to my GP or Specialist to do, but I am keen to hear about people’s experiences with progression of the disease over a long period of time.....
Best wishes to you all....
Kim x
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Purdy13
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hello Purdy13 and welcome to our forum. It can be very daunting when you are newly diagnosed and like you, waiting for a diagnosis. I would advise that you read as much as you can on our website mpnvoice.org.uk, I am sure this will help you to understand more about ET, and I am sure that reading previous posts on this forum will also help you.
It is understandable that you are feeling anxious about this, and it is difficult having to wait for further tests, but please do try not to get to anxious, easy to say I know, but if you do have ET, please be assured that there are lots of people living with it and have been for many years and doing ok, I myself was diagnosed with ET in 2003 and doing just fine, so please try not to worry too much.
Thank you Maz for you wise words and support, I guess it will all play itself out in time so my goal is to try not to let my anxiety get the better of me (easier said than done though).... Merry Xmas to you x
You are correct in noting that this could well be a reactive thombocytosis rather than Essential Thrombocythemia. Something your GP could do to shed light on this is to order a blood test for the three driver mutations that cause ET - JAK2, CALR, MPL. Many docs will start with just JAK2 since it is the most common, about 50% of people with ET.
Consultation with a MPN Specialist would be a good idea to get a definitive diagnosis. It is essential if you do in fact have a MPN. Here is a list of MPN Specialists.
Do know that if you have ET that you will have a long time to learn to manage it. There is a truism that you are more likely to die with ET than from it. I was diagnosed with ET about 30 years ago. It progressed to Polycythemia Vera about 8 years ago. For most of this time I was on aspirin-only and did fine. I am now managing the PV (erythrocytosis + thrombocytosis) successfully with PEGylated Interferon. I have lead a rich life and at age 66 continue to do so. Please plan to do the same.
Thank you so much for your helpful advice and words of encouragement Hunter, I really do appreciate it....
I think the way forward for me is to have my blood checked by my GP every 2 months for the next 6 months to monitor my platelets seeing as my other counts were only done whilst I had other health issues ongoing at the same time. I presume if my levels go back within normal range he may hold-off referring me to an Hematologist or alternatively refer me if necessary....
What I struggle to get my head around though is all the different parameters that various labs use? For example my lab results normal range is 150-450, so if my results were to come in at 420 for example then my GP would not refer me as it’s within there “normal” range. What worries me however is I’ve seen that other labs have a cut-off point of 150-400, if I was under the care of a different GP with those guidelines then I would be referred at 420..... 2 very different scenarios yet very important I feel, I cannot understand why there isn’t one set of values for all ?
Another confusion is my GP said to me that this could just be your “normal for you”. He said that I could well be someone who just has a higher than normal (albeit mildly at my readings so far) platelet count with no underlying cause? Yet I’ve read on the internet that even if tests for the drivers come back as negative some Specialists still diagnose ET if they can’t find a reactive cause? Which sort of contradicts my GP’s views on “that could be just normal for you”.
I feel that I will accept the diagnosis of ET if it is proven to me on lab reports but will struggle to accept it just because a Specialist isn’t entirely sure what else could be causing it?? Am I right in saying an ET diagnosis should only officially be made if Driver tests come back as positive or if triple negative then it must show evidence on a BMB? If both blood tests and BMB are negative then a diagnosis of ET shouldn’t officially be made?
I know I’m jumping the gun, this shows how my anxiety levels are through the roof at the moment, I am just totally confused after reading so many conflicting reports of what is the normal cut off range (ie 400 or 450) and why some people are diagnosed with ET even without positive clinical evidence just because a Specialist struggles to find a reactive cause? It all sits uncomfortable with me....
I shall wait and see what my results are and hope that whichever way it goes I will get a difinitive diagnosis so that I can do my best to plan to move on and live with whatever comes my way....
Thank you again for taking the time to reply and all the best with your journey too.....
We all run into the differing reference ranges used by various labs. One of my labs uses 369 as the top of the normal range for platelets. The lab reference range is not relevant to the diagnosis of ET. Most doctors would use the WHO Diagnostic Criteria, which is platelets >450 (note this actually means 450,000). Note that there are additional criteria for an ET diagnosis. you must met 4 of the major criteria or 3 major and one minor criteria.
While most people with ET will be positive for one of the driver mutations, not all are. This is called Triple-negative ET. The ET diagnosis is made based on evaluating all of the criteria for ET.
It is actually true that some people just tend to run on the high side with their platelets. When this is true, reactive thrombocytosis pushes them up over the "normal" line. This does not pose any particular risk and people will typically remain asymptomatic.
Your anxiety about all of this is understandable. We have all been there with that. I would suggest that getting an answer sooner rather than later would be good for your peace-of-mind. Dealing with the known is easier than the unknown. Suggest talking to your GP about running the genetic test for the driver mutations. It is a simple blood test. It is one of the first things a hematologist will do anyway.
Please do know that even if you have ET it can certainly be successfully managed. If you are asymptomatic at your age and platelet levels the treatment would most likely be low-dose aspirin and monitor. Also know that assertive patients receive higher quality care. Passive patients do not. If you would rather know your MPN Status sooner than later then it is your prerogative to purse the testing and/or consultation with a MPN Specialist now,
When I first found out I had ET, I also was in a right state, but finding this site was extremely helpful in allaying my fears.
Sometimes medical diagnosis is not as clear cut as we would like and with something like ET it is especially murky as it is a diagnosis given based on exclusion of any other cause. I would suggest checking to see if you have other symptoms that often come with ET, like
Headache
Dizziness or light-headedness.
Chest pain.
Weakness.
Fainting.
Vision changes that eventually go away.
Numbness or tingling in the hands and feet.
Redness, throbbing, and burning pain in the hands and feet.
Though those symptoms may also have other causes, so regardless of whether or not you have symptoms, I hope your doctor will ask for tests to check for ET drivers, which would clarify the situation.
For myself, I had 6 of the above symptoms plus ocular headaches which disappeared after starting medication.
Something to keep in mind is that ET is not a killer disease with proper care. Finding out what that proper care is may take a while, it took 9 months to find the proper amount of medication for my platelets to be at safe levels. And it probably require more than a single check up every year to keep track.
Speaking only for myself, once we got the medication to the correct dosage, I have found that ET is not particularly intrusive on my life. I hope that should you have ET, yours is equally innocuous.
Hunter & Nightshadow..... I am already feeling comforted by reading your responses, thank you so much.....
In my case I have no symptoms, my two platelet counts of 566 and 589 earlier this year showed up on a routine blood test for my under active thyroid gland. My GP then noticed I had another two on record of 511 and 488 back in 2005 and 2017, all were when I had underlying infections etc etc so not sure if reactive readings hence why he is monitoring me now for the next 6 months before deciding if I need to be referred to a Hematoligist....
Hunter - I didn’t realise I could ask my GP to do the Driver tests, I thought I had to wait to see a Specialist, I will ask him about it.... I would also like a Ferritin test done too as whilst I am not aneamic my MCV, MCH & MCHC levels are all just over the lower limit so not sure if that may be significant or whether I’m just clutching at straws....
In 2005 my platelet count was 511 and my last one a few weeks ago was 549 so whilst still over the 450 limit I take comfort in that they’ve hardly changed in 17 years.... I’m not sure if that can be the pattern of ET or if after all of that time they would normally get higher and higher with ET?
Early days with my tests and diagnosis and I’m probably thinking of too many different scenarios at this stage but I am glad I have found this Group, it gives me hope whatever the diagnosis is to come. Thank you all again....
Hi KimI am 39yo woman and was diagnosed with ET earlier this year- following abnormal platelet counts, and also a lot of microvascular symptoms (ocular migraines, burning hands and feet etc). For me, the diagnosis (JAK+) came initally with mixed feelings- i was put on daily low dose aspirin which gave me immediate relief from most of my symptoms and honestly, for me it was a relief to have a diagnosis of something i could name and not just think i was going crazy... on the other hand, i was initially reeling a bit, especially when 'doom scrolling' and seeing words like cancer and strokes... i hadnt had any serious health conditions before and i started to wonder if i need to redefine my whole sense of self as someone who is 'ill'. But 6 months later i really want to reassure you _ like nightshadow- that this really has little intrusion in my daily life. My symptoms are under control, and following a BMB, i only need daily aspirin and an occasional blood test/check up just to monitor. (My last haematology appointment was in september, the next a phone appointment in May 2022). I've been told likely i won't need any other medication for another 20 years. The biggest uncertainty for me right now is of course covid risk (it is surreal going through this in a pandemic)- but with vaccines and new treatments coming through that is fairly reassuring- and my diagnosis means i am more likely to receive treatments sooner if i were to become ill with covid. Most of the time i feel pretty 'normal' (and a lot better than when i was going through a lot of symptoms). In your case, it sounds like there is a good chance cyour platelet counts could be reactive to other inflammation etc. But in case you do receive an ET diagnosis be reassured that it need not be a life limiting condition, both in terms of life expectancy or even everyday activities. Especially as you are not symptomatic and i assume are feeling quite well most of the time. I am reassured that this condition was discovered before i did have any incidence of serious clotting etc, and that it is known in case i am ill with covid. I am relieved that my condition is being monitored, and that i have learned through MPN voice of huge strides in MPN research and treatments. And if you do need advice and reassurance, this forum and MPN voice more generally is a great resource. Best wishes.
Hi Ethyl, thank you so much for taking the time to reply, it is very much appreciated x
I suffer terrible with stress and anxiety and so I’m having trouble being level headed about all of this. My high platelets have come as a complete shock out of the blue, just from routine thyroid check-ups, no symptoms, and what’s made it worse is the GP just dropping it out that I had a high reading (511) in 2005 too....so I’m finding all of this out nearly 17 years later....
I understand that my platelet levels (511 in 2005 and 549 now ) are relatively mildly elevated at the mo and not that much change in 17 years so I’m trying to remain positive about that pending more tests etc....
I only hope that should I be diagnosed with ET I can reset my brain to think like all of the rest of you as you really are an inspiration. At the moment I’m going through the “feeling sorry for myself” stage, I’m pining for my old life back where I hadn’t even heard of the word “platelet”, a life of no worries, instead I feel like I’ve lost myself at the moment, my head is consumed by worry and what-ifs and I haven’t even been diagnosed yet 🙈
On better days I think about all the people who have worse things going on and the fact that if I do have it it could well be life as normal and to feel lucky that it’s been picked up and being monitored. I think for me personally mental worry is as big an issue in my life as anything physical going on so it’s as though I have two battles. Thankfully though people like yourself and others on here are helping me to pull myself together more.... Onwards and upwards they say, I’ll plod on and see how this journey pans out for me....
Have a lovely Xmas and I sincerely hope for all best wishes to come your way in your own journey.
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