Hi I’m 58 and after suffering with migraines and fatigue for months last week I started spontaneously bruising. Had lots of scan and blood tests and the blood count showed my platelets were almost 1400. I’ve seen a haematologist and been started on aspirin, 2g hydrea as well as allopurinol. The hematologist believes it’s probable Essential thrombocythemia (ET) but waiting for my final diagnosis. It was a complete shock to me and the future terrifies me. Any suggestions and support would be appreciated. How quickly should I expect the platelets to fall and dies the bruising and headaches settle once they are back in range .
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Hi @Robert1967, welcome to the Forum - though I’m sorry you’re having to be here.
I’m not a medical expert, and giving medical advice is against forum rules - so I can’t answer your questions about how quickly your platelets should drop or when your symptoms might settle. Your haematology team are the best people to ask about that, as it varies from person to person.
Of course, others with lived experience can share about their own experiences of when symptoms settled for them.
If it helps, I can bring in our Blood Cancer UK nurses who might be able to offer some guidance on what questions to ask your team.@BloodCancerUK_Nurses - would any of you be able to kindly offer any insight here?
In the meantime, you might find our information about Essential Thrombocythaemia helpful, and if you’d like to talk things through in more detail, our support line nurses are available on 0808 2080 888 or support@bloodcancer.org.uk.
Take care,
Ceri - Blood Cancer UK Support Services
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Hi,
I find myself in the same situation I was diagnosed in January this year but thought all my symptoms were also PM. I’m just waiting to see if I get an official letter confirming it as I also feel a fraud as my mum has stage 2 lung cancer and I have been supporting her since March 2025. I have a meeting at work this week so they can offer support and offer adjustments but I am finding it all a bit bizarre as never heard of it before and when I told my family they initially thought it was Leukaemia so when I explained it to them, they think I will be fine. I think as it’s a cancer it’s very scary but I’m interested to know how you and anyone else has been with it. As I’m not sure if I should tell anyone else as I feel they will just think I’m looking for sympathy and attention. It does explain a lot though as my sleepless nights and fatigue are horrendous and is a daily occurrence and I’m not sure how I function every day tbh. I’m on monitoring every 3 months and low dose aspirin too. Has anyone got advice on travelling abroad etc and any good insurance companies too as theres lots to think about too. I just hope your managing both lots of symptoms as it’s difficult to know what is what. I am 54 and started with PM symptoms at 50 and still not through yet so it’s a bit of a battle anyway. At least I know some of it was MPN (Myeloproliferative neoplasms) Essential thrombocythemia (ET) now though.
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Hello @Robert1967
Thank you for your post and welcome to our forum!
Sorry to hear that you are going through what sounds like an understandably challenging time.
Please know that you are not alone and you can talk to others on our forum, hopefully other people will share their experience with you. We also have our support line and email as Ceri has kindly mentioned should you wish to talk to one of our support nurses.
We also have a page on Looking after yourself with ET (essential thrombocythaemia) | Blood Cancer UK which includes tips to help manage symptoms of Essential thrombocythemia (ET) and useful information on helping well-being.
Headaches, fatigue and bruising are all symptoms of Essential thrombocythemia (ET) and hopefully by commencing on medication it will help to manage these side effects. Do keep your treatment team updated on how you are feeling so that they can support you as best they can. Do you have a clinical nurse specialist you can speak to?
It’s difficult to advise if these symptoms will subside and how quickly they will, if they do, but medication does often help to manage or reduce symptoms caused by Essential thrombocythemia (ET). We would advise having a chat with your team about this and they may be able to give you an idea of what to expect based on your blood results.
You can find more information about symptoms on our page Symptoms of essential thrombocythaemia (ET) | Blood Cancer UK
If you begin to feel unwell, have a sudden change in your headache or the headaches become very severe please call 999 or go straight to A&E.
Do take care & warm wishes,
Emma (Support services nurse)
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Thanks. Had a long chat with my hematologist yesterday. Unfortunately ended up being admitted yesterday after bleeding from my mouth would not stop. It looks like I scratched my mouth just eating a bag of crisps. I need to learn what is safe to eat!
Regards
Robert
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Hello @Robert1967
Thank you for your reply.
So sorry to hear that you were admitted! I hope you’re doing okay!
We do have our What to eat when you have blood cancer | Blood Cancer UK and Eating well with blood cancer booklet | Blood Cancer UK Shop information in case this is helpful, but there is nothing wrong with having crisps, this sounds more like this may of been an accident.
Do take care & keep us updated!
Emma (support services nurse)
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Amazing how a bag of crisps could cause issues @Robert1967 and good your team are on the case to deal with it.
Hopefully on the mend soon
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Hi..I’ve had Essential thrombocythemia (ET) for 3 years my platelets are around 900 ..I’ve had a consultant appointment and his asked me to go on medication..I’ve got telephone call with him tomorrow so he can organize my meds ..I’m still really worried about this as the only bad symptoms I have are tiredness and pins and needles.. although these are not good I’m worried about the side affects of the meds ..I want to feel well again and get my energy back..I’m worried the meds will make me feel worse ..any advice
Thank you Emma x
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Hello there @Emma1111, welcome to the forum and apologies for not greeting you until now. I’m so sorry to read of your diagnosis with Essential thrombocythemia (ET).
Sounds like treatment is underway and by now you’ve seen your consultant. May I ask how it went? I imagine further discussion about medication occurred so I hope that was helpful. It’s a lot to take in, right?! I’m still learning about the Polycythaemia vera (PV) I was diagnosed with in 2023 and would say just take your time.
Just wanted to say you’re not alone with that diagnosis and I’m sure you’ll find many other forum members who know what you’re going through right now. Perhaps you would like to read the great Blood Cancer UK information about Essential thrombocythemia (ET): Essential thrombocythaemia | Blood Cancer UK
I’d suggest having a look around the forum for others living with Essential thrombocythemia (ET) as there’s a lovely bunch, sharing experiences of their treatments. Here’s a great thread: ET diagnosis finally sinking in
Do please let us know how you get on @Emma1111.
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