I am a young adult female who is currently seeing a hematologist for a raised platelet count, but I am not getting any answers. My platelets have been rising for years now, and were around 450 in 2018, and now are consistently staying around 515.
So far the only test that indicates something is wrong is the raised platelets. I’ve tested negative for all the gene mutations and recently had a bone marrow biopsy, and while I’m still waiting for the full results, I was contacted and told nothing so far indicates the presence of an MPN.
I really do not know what to do right now. I am suffering from severe fatigue that began a few months ago and is interrupting my daily life. I would suspect Essential Thrombocythemia but my hematologist says she doesn’t believe I have ET despite the increased platelets being chronic and there being no indication of reactive thrombocytosis. I read that ET is a diagnosis of exclusion but I fear my doctor will continue to disregard me because everything else is normal. Does anyone have any advice? My family and I are very stressed at the moment.
Hi @fllute a great big welcome to our forum. Firstly there are other posts on here about raised platelet counts with similar concerns.
I am certainly not a medical person. As you say medical experts go through a series of monitoring and tests sometimes before being able to give a definitive diagnosis, we are very complex beings and also similar symptoms can make it confusing.
You seem to have more medical knowledge of conditions than me.
Being stressed certainly brings on fatigue with me.
I have learnt over the years to write down everything I want to ask before appointments including my fears, thoughts, feelings, questions, symptoms, results, family history and practicalities.
A consultation is a two way process so I now make sure I ask or reiterate all of the above and ensure that I get an answer that I understand.
There is also an option of a second opinion.
We are here to support each other and if you would like to speak to someone the support line details are above.
What I would say is to be kind to yourselves and spoil yourselves, you cannot do anything till you get the full results. Take care and let us know how you get on.
Hi @fllute, we can only imagine how you must be feeling not having any answers to why you have raised platelet counts or the reason for the severe fatigue. Have you spoken to the treatment team about having second opinion if you feel you are getting any answers? As Erica mentioned a consultation is a two way process and it’s important you feel comfortable and are able to express your concern and worry about the lack of answers to your situation and the impact this is having on your daily life.
I’ve had the exact same issues and my GP and local haematology dept are doing nothing about it. It’s so frustrating they just say wait another 4 months and we will check again. This all started in September last year. GP has not seen me in person, asked about any symptoms or anything. It’s very disheartening. I’d take some reassurance that the tests you have had were ok. It’s horrible waiting and feeling worried isn’t it.
Hi @Kitty and @fllute, I hate it when others are doing (or not doing) what I think they should and it is out of my control. The waiting is the worst.
We are here to support you both as I expect we know what you are both emotionally going through so much better that our medical people. They sometimes don’t realise what it feels like to be the patient.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (Mondays: 10am-7pm, Tuesdays-Fridays: 10am-4pm, Saturday, Sundays and Bank Holidays: 10am-1pm) or via email at support@bloodcancer.org.uk.
Take lots of care both of you and keep posting.
Unfortunately, the rarity of ET meanns that many GPs have not got a clue about it. But the genetic test for a causal mutation (JAK2 or CALR) has been available for years (2013 for CALR, earlier for JAK) so any haenatology department should do this as routine if there is any suspicion of an MPN.
Having said that, patients with ET who are young, with no other risk factors are often on “watch and wait” for years. I was 69 when diagnosed, so it was straight on to Hydroxycarbamide and 8 years later, the ET is behaving pretty well. Platelets hover around 600, (1.5million at diagnosis) so 515 would be great in my case!
Hi @fllute stay positive and try not to imagine the worst case scenario. It looks like they are taking this seriously and that you are in good hands but for everything else you’ve got the support on here and the BLUK support line. Here’s hoping for a good outcome for you.
Glad you’ve gone to get help…it may be secondary essential thrombocytosis…that means could be an.imflammation.or something elsewhere causing your platelets to be higher
I was diagnosed with primary ET and had rising platelets. Also mutation of CALR …which means I’m
More prone to z bleeding event than a thrombotic event.
I know worry and stress can cause platelets to.rise. Fatigue is a common.symptom with ET…so are head ache s …itching …bone pain hot sweats.
They may put you on aspirin which is a common treatment and other medication if your platelets rise to over 1500…alot of options depend on risk factors and your age.
I really hope you get your results soon…try not to worry…hard not to
My platelets when diagnosed were 600 plus by 2019 1780…so they started me on low dose chemo…hydroxicarbamide… it’s been like being on a roller coaster and with taking Angralide finally got them to 340 and then 169 a few weeks ago.
Wishing you all the best for when your results come through. Everyone Has a different story but we’ve all been at that point like yourself…
Thanks Good news for sites like this people and professionals can really help you…
Take care of yourself and stay safe
Hi Hmc63, are you on both hydroxycarbamide and anagrelide then? I have mentioned this possibility to my haematologist but (perhaps because of my age?) she won’t consider it.
Yes I am as my platelets stuck at 800…as soon as I went on Angralide…they went down t0 600. …they remained like that for 7 months then they increased my dose to 4 a day… I now take 3va day and 2 HU tablets every other day .my platelets are now 169…
I’m.on alot of blood thinners due to having an anyeurism in my head…which I needed a stent for. Hopefully comming off these in 8 weeks and back to 1 aspirin a day…