ET Diagnosis Process

Worried you might have a blood cancer?
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Hi everyone, I’m from Wales and currently going through the process of finding out if I have Essential thrombocythemia ('ET') (essential thrombocythemia) or not and wanted to know if anyone is/was in a similar situation.

I found out my platelets were elevated at 483 in April 2020 when having a blood test for something else and told not to worry about it. When we changed GPs after a house move in 2021 I had another blood test and they were at 504, they didn’t give me the figure at the time and told me everything was stable and I wouldn’t need further tests. I didn’t chase this again and put a lot of symptoms down to IBS, menopause and osteoarthritis.

Recently I queried with the COVID Vaccination Centre why I kept getting invited as I was sure it was just the elderly and vulnerable that were being called at the moment and they told me it was because I was immunosuppressed and I should contact my GP if this was a mistake. I asked for a copy of my medical notes to find out what was going on, thinking it would be the platelets hadn’t been adjusted as stable and it was a mistake. At the top of my notes it had as an active issue Essential thrombocythemia ('ET').

Obviously very concerned I saw my GP straight away and she said that they couldn’t say if I had it or not and it was there for them to monitor the situation. Nobody told me this ever and I’d certainly have been with some issues a lot sooner if I’d thought this was a possibility. She said she could see I was concerned and she’d send me for a blood test to reassure me and that she fully expected it to come back fine.

A week later I got the results and the platelets were now at 609, so she has referred me to see a haematologist and an abdomen scan, the scan came back clear of any issues.

The haematologist asked for me to book in for a JAK2 test which I found out yesterday was negative, and I’m now booked in for the Calr and Mpl test in two weeks time, so all the other tests have been done as urgent but not this one.

Also, a couple of weeks ago I had a subconjunctival haemorrhage in my eye and my GP sent me for another full blood test, the platelets are now at 624.

I guess my concerns are if these tests come back negative too what happens as there’s something clearly wrong and the platelets are going up even if it isn’t by much, my GPs attitude is very much what are you so worried about (one said it’s not worth getting this stressed over it’s just Essential thrombocythemia ('ET')).

Symptom wise I have a lot of bone pain, especially my legs and left arm which I’ve put down to osteoarthritis. Hot flushes as menopause. I’ve suffered with headaches and dizzy spells for a long time. Breathing problems I don’t really know where they come from but it can happen even when I’m not active. Lot of IBS issues I know get worse when I’m stressed, the GP I saw yesterday discussed an anti inflammatory diet with me and to think about trauma therapy because I can get stressed. I do get tired but I’m not sure if I’d call it fatigued most of the time, same with bruising I do get random how did that happen bruises and my knees bruise if I kneel down but I don’t know if that’s normal or not. Pins and needles in my hands and feet sometimes and itching mostly on my chest.

I’m just worried we’ll get to the end of this and still have no answers, that I’ll be sent away to be monitored again which meant nothing happened. Is there anything I should be asking when I do get to see the haematologist? I definitely need to ask if it could it be down to one of the issues I have already as I feel this is what the GPs are saying (osteoarthritis, migraine, IBS, menopause, can stress be a factor?).

Thanks everyone, sorry this was so long!

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Hello @Ljj

Thank you for taking time to send your post into the forum

My heart goes out to you as it is clear there are lots of things on your mind and you seem very worried about the tests and results etc.

I think you are doing the right thing by keeping in touch with your medical experts and i encourage you to continue to do this

That having been said - i have asked one of our @BloodCancerUK_Nurses to respond to your query as there a lot of questions there that i am not qualified to address.

If you would prefer you can call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.

Our phone lines are open:

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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.

Do take good care and do feel free to let us know how you get on

Kind regards

Mike

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Thank you so much, I think I got everything out there thats bothering me! I know I need to just let it all play out but it’s difficult at times, I lost my dad with a heart attack so the increased risk of that has been particularly scary. Many thanks again.

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Don’t apologise for the length of your post @Ljj

Everyone on the forum can relate to that feeling of just waiting for test results and news.

Take care

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Hello there @Ljj, welcome to the forum at this confusing time. You are certainly not alone in being tested for Essential thrombocythemia ('ET'), or other Myeloproliferative neoplasms ('MPN') like Polycythaemia vera ('PV'), as there are many forum members who have been through testing for these, including myself. It’s a lot to take in, isn’t it?!

May I just say I am sorry to read of those symptoms you’ve experienced like the haemorrhage in your eye, bone pain and stress—obvious understatement but they don’t sound fun at all.

I’m also sorry to read of how long the testing has been going on, and how it seems like the COVID-19 vaccination folks had a note about Essential thrombocythemia ('ET') in your medical information without you being told. I would also be very concerned! Let this guide your self-care, and do try to take it easy on yourself as you await further testing and results. Have you got loved ones you can share this with? A problem shared can really be a problem halved, I find.

I’d say from my non-medical perspective that it’ll help to know what it is you are living with that is affecting your blood cell numbers, whether it is Essential thrombocythemia ('ET') or not. Those symptoms of dizziness and headaches alone are what my haematologist asks me to let him know about in relation to the Polycythaemia vera ('PV') I live with. So I’d suggest contacting your haematologist directly or the clinical nurse specialist you might have contact details for. Tell them about Essential thrombocythemia ('ET') being noted on some of your records and ask if that is what you have been diagnosed with. In fact, keep a list of queries and ask them whenever you speak with a specialist—I find my nurses when I pop in for blood tests often share great advice.

I’m wary of directing you to research and information about Essential thrombocythemia ('ET') in case you are free of it. You certainly don’t need any bonus stress right now! Would it help if you gave the Blood Cancer UK nurses a call? We forum members can’t offer medical advice, but the BCUK nurses can, amongst many other resources. Their number, like @GenesisDevice kindly shared, is 0808 2080 888.

And like @DuncanB says, there’s no need for any apologies, especially as you lost your dad in a way that I imagine is very triggering right now. I happened to survive a heart attack and go on to be diagnosed with Polycythaemia vera ('PV'), and so I just want to reassure you that the science behind all this is keeping me alive and well. I also have had therapy for trauma (EMDR and somatic therapy) and would say if you’re being offered this then it could be a great way to work through what’s worsening the stress.

Hope that wasn’t too much information @Ljj, I know you’ll find support here if you need it. Please hold out hope that you won’t be diagnosed with Essential thrombocythemia ('ET') or similar, be gentle with yourself, and I’ll look forward to reading how you get on.

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Thank you, that’s very much appreciated.

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Thank you so much for your response you’ve been a great help. I think in a lot of ways I just needed to talk to someone going through all of this, I’m obviously hoping that it isn’t something serious but I just want answers at the end of the day and hopefully we’re working towards that.

My husband is a great help but I’m trying to shield him from some of my worries, not easy when you are so close to someone, he knows straight away if I’m having a bad day.

You’re right about the research too, I have looked into things a bit but don’t want to look too much until I know what’s going on, hopefully when the haematology appointment comes through I’ll know a lot more and I can think about what to do next, trauma therapy is something I would definitely look into.

Thank you again for your response, much appreciated.

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You’re very welcome @Ljj, I’m glad to have been of help. It really does help with all this to know others are here on the forum. I’m so glad you have your husband there and I understand the need to protect our loved ones. I’d say we need to allow ourselves to be protected too.

Do keep looking around the forum, I know of many lovely members who live well with Essential thrombocythemia ('ET'). If that does turn out to be your diagnosis then it might not seem so worrisome if you already know of people fitting their lives around it. Just use the search box at the top and you’ll find threads about Essential thrombocythemia ('ET').

Do please keep us posted about how you get on @Ljj, and don’t forget you can contact the CNS or haematologist you’ve seen already for more information. The specialist support nurses at Blood Cancer UK are there for you too.

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I will definitely do all of that, thank you so much again.

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@ljj So sorry to hear that you have had such a path of uncertainty. I was fortunate to have had a very smart primary care doc who immediately saw a red flag of elevated platelets over a period of time and wasted no time in sending me to a specific hematologist at a cancer center who he had worked with and trusted. I am in the US. One advantage that I had is that my doctors generally all use the same online system (for a chain called Advent Health) and that they all either post every blood test finding immediately on that system, or send me to a specialty company that does blood testing (Quest) which also posts lab values immediately. All of these systems include information on the normal lab values for the test, and allow me to do things like chart all platelet levels over time. They also post immediate notes from the doctors summarizing the visit. Does your system allow such easy online tracking? That really helps in understanding these things.

In my case the JAK2 test came up positive so my diagnosis was straightforward (Essential Thrombocythemia or Essential thrombocythemia ('ET'))–it was also confirmed by a bone marrow assay (easy) that settled the diagnosis. I have been given a medication, Hydroxyurea, that lowers the platelet levels. They are also very clever at adjusting that, if the platelets get too low they find a way to up the dosage slightly, and vice versa. For example currently I take the medication every morning, and 4 evenings every week (Tuesday, Thursday, Saturday, Sunday). They have been able to keep me in a good range doing that.

I will say, if I had a doctor who wrote a medical note raising suspicion of a diagnosis and did not tell me about it, I would strongly consider switching to a different primary care doctor who was a better communicator. I want the truth, even if there is uncertainty.

Hang in there… uncertainty is very stressful. For me being able to see all the doctors’ notes and lab values and download them to my computer and try to understand them has been a real stress reliever.

Bill

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Hi Bill, thank you so much for your message I really appreciate your response.

My GP doesn’t use online services well at all, we don’t have access to book appointments, see test results or anything much really other than see past and upcoming appointments and even then some are missing. I did make my own record of platelet levels when I got my medical records though which is helpful.

I’d have moved practices a while ago if I could but in the area I live there is only one practice I’m allowed to register with which is annoying.

The waiting and and uncertainty is stressful, I don’t know what happens next either way, if the next gene blood test is negative or positive, so do I just wait for the haematology appointment then or will I be booked in for anything else first like a bone marrow test. It feels like one test at a time and long waits for each result. I shouldn’t complain at least I’m hopefully getting somewhere now.

I’m so glad you have a great team behind you it’s part of the stress so to know they are on the ball is priceless.

Thank you so much again, really appreciate it and hearing about your journey is very helpful.

Lisa.

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Dear @Ljj

Thank you for posting and I can see our wonderful forum community have given you some great support already.

It is understandable that you are worried about your raised platelet levels and the tests that are being done by Haematology. I am hopeful you will get answers soon but appreciate the fear around not knowing. It might be good to take a look at our What is essential thrombocythaemia (ET)? | Blood Cancer UK web pages so that you feel prepared for further appointments, that is not to say that you definitely have Essential thrombocythemia ('ET') but that you are being investigated for this.

I would suggest writing a symptom diary so that the Haematology doctor understands what are new symptoms and what are symptoms you have experienced historically.

As previously mentioned, please do either email our blood cancers nurses on support@bloodcancer.org.uk or call us on 08082080888 (Option 1).

Best wishes

Gemma

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That’s really good advice thank you so much I will do that definitely.

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Hi Lisa @Ljj I am glad that my comments were helpful. In the US, we do not have universal healthcare coverage. I teach about this topic–the US spends far more money on healthcare than other affluent countries, including the UK, but also has significantly lower life expectancies than these countries. Much of this is due to inequalities, many Americans either do not have health insurance or it is very expensive. So those of us who have good health plans have lots of great features such as the ones I mentioned. This inequality in our system leads to terrible outcomes such as people not being able to afford medications or extremely long waits. Low income Americans also have far lower life expectancies than affluent Americans, these discrepancies are much smaller in the UK and other affluent countries.

This website shows a chart of this relationship between spending and life expectancy by country. If you click on the arrow below the chart it will animate the data to show how this has changed by country since 1970. You can change the countries that are included if you want. You will see that the US is an outlier with far higher healthcare spending and significantly lower life expectancy.

https://ourworldindata.org/grapher/life-expectancy-vs-health-expenditure?time=2023&country=USA\~CAN\~FIN\~FRA\~DEU\~IRL\~JPN\~NLD\~NOR\~GBR

My workup moved very fast, it sounds like you have limited choice and just have to go with the system as it is. I don’t know if you will even need a bone marrow test–in my case it provided a confirmation of my JAK2 acquired mutation and more details, but it may be that your blood test will not require more of this kind of testing.

Hang in there, good for you for assembling your own data, I do some of that as well.

Bill

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FYI here is a chart of my platelet lab tests over time that I was able to save from my primary care doctor’s online system. I was referred for assessment by a hematologist just after this May 2025 assessment. The doctor caught the pattern but having these records available was really useful to me in understanding when and how this elevation in platelets developed.

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Hi Bill, thank you for your message and information.

I have quite a few friends in America so know the struggles they have with healthcare, absolutely makes me grateful for what we have here and to be fair as much as I wish things were quicker (and the communication was better) it isn’t really that long in the grand scheme of things.

I’m not sure if there will be any more tests either, will have to see how it goes. I just hope I get to the bottom of what’s going on.

Great advice to do a symptom tracker, any excuse to do a spreadsheet with me lol.

Lisa.

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That’s really helpful I might have to do that as well, I’ve made a note of my levels from my GP Records since this first came up.

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Good luck @Ljj, let us know what your trends were if you want to share it.

In trying to understand the onset of my Essential thrombocythemia ('ET'), I know that I also had anemia for several years before this rise in platelets. None of the blood levels were improved by me taking various types of iron supplements. I haven’t made a chart of it but the data are there if I wanted to. My primary care doc felt that the anemia was likely a consequence of a bout of pneumonia, he called it “anemia of chronic disease.” Interesting label but didn’t lead to any treatment to reverse it.

That anemia has not improved with the diagnosis of Essential thrombocythemia ('ET') and treatment with Hydroxyurea. My hematologist just started me on a series of B12 shots last week–didn’t really explain why but it came after I had some episodes of relatively minor spontaneous bleeding in my arm, and my platelets had diminished to the low end of normal. They decreased my Hydroxyurea a bit. My lovely wife is a good sport and learned how to give me the injections (I get queasy if I even look when getting a shot), we will see if that changes things when I see the hematologist again in a few weeks.

I trust the doctors to keep an eye on these trends but I want to be as informed as I can.

Bill

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Hi Bill,

Your wife sounds wonderful, honestly every blood test I can’t look, last time I looked I nearly passed out. It doesn’t help that my veins are apparently very thin and they struggle getting anything out of one arm in particular, last time both arms.

It is interesting what you said about trying to understand where this has come from and your pneumonia, sorry to hear about that. Around 2017 I had a very bad chest infection, don’t think I’ve had any anaemia. Some symptoms have been for a very long time though, headaches, dizziness, breathlessness although that has got worse. Definitely with you on wanting to be well informed.

I have a couple of years missing as I didn’t have any tests during that time, but my levels are:

483 April 2020
504 April 2021
516 in August 2022
609 mid May 2026
624 end of May 2026

Lisa.

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Thanks for sharing @Ljj Lisa. Interesting, it does look like there has been a long term rise in your platelets as well. I don’t think there is a lot known about the pre-diagnosis course of these conditions.

I have had regular blood testing since 2023, when I developed pneumonia, then an attack of diverticulitis, which led to some kidney damage. I was also diagnosed with coronary artery disease in 2024. The Essential thrombocythemia ('ET') wasn’t diagnosed until 2025. It all sounds worse than it is, probably much of this might never had been diagnosed, but having a sharp and attentive primary care doc who listens and watches out for my labs has been really helpful. I am 71 but generally feel healthy, and work full time, although I get fatigued if I put in a long day.

I am well aware that in prior times it might have taken me dropping from a stroke or heart attack (the Essential thrombocythemia ('ET') increases risk but the meds diminish it) for anyone to diagnose these conditions. My father died of heart disease at 71 and grandfathers dropped in their 60s with heart disease. I am quite willing to put up with getting lots of lab tests and take lots of meds to enhance my chances of living a long full life.

Oh, my wife is a treasure–we just celebrated our 50th wedding anniversary yesterday! Had a beautiful dinner out with our grown sons and watched the sunset at Clearwater Beach. She is an experienced caregiver, took care of her mother who died of cancer and brother who had quadriplegia for decades. I have done a bit of taking care of her too, she broke a shoulder two years ago and needed lots of help, I had to take over all of the washing dishes, cooking, doing laundry, and driving. I am very grateful for her taking over the shots so I can look away and not pass out :slight_smile:

Best wishes as you continue on the path to get a clearer diagnosis and great care.

Bill

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