Hoping someone can help or shed some light, I had my jak2 which came back negative, also negative for all autoimmune conditions, which is great, platlets up to 604 now and have bmb on Thursday, I’m feeling extremely anxious weirdly that that will come back negative too and I will be left with not knowing why my platelets are slowing rising, it’s not that I want to have something wrong with me I’d just like a reason for always getting sick and when I’m not sick I always feel like I’m getting sick and always napping and exhausted. Anyway my question is anyones platlets just increase for no apparent reason?
Hello @Melmc, I understand your uncertainty and possible confusion about your rising platelets. As a fellow patient, all I can say is that I was JAK2 negative also, but there are other gene mutations that can affect your platelets. JAK2 is the most common one but I was found to have a different one called CALR. Hopefully the bone marrow tests will shed more light on your situation. I feel for you at this time and wish you well. Don’t forget to tell the doctors looking after you about any symptoms you are experiencing including fatigue and frequent infections. It is tempting to make light of these things but it is always good to be honest as it helps the medics to get the full picture. Warm wishes, Willow x
Thank you for your reply Willow, I feel like if I push theyre going to think I’m looking to have something wrong with me but I have been running to the docs last few years saying I didn’t feel right and that I’m always sick (I don’t take time off work for the sickness so it’s not in my own head). Hopefully I get some answers with the bmb. Thanks again
I hope you’re doing okay?
Willow has given you some great support already. I am also hoping you get some answers from your bone marrow test because we understand how difficult the ’ in limbo’ period can be. Not yet being given a label or diagnosis whilst knowing that your bloods are somewhat off and you warrant investigation can feel so conflicting.
I urge you to trust your gut and keep relaying your symptoms as this is a process of elimination and the end goal is to have you feeling better and understand the why’s.
Do know that if you wish to talk things through at any point our helpline is very much here for you- 0808 2080 888.
Do Take Care, Lauran
Hi @Melmc great to hear from you again.
I am not surprised you are feeling extremely anxious, be kind to yourself
@Willow and @LauranBloodCancerUK have given you brilliant responses which I will not repeat.
Please do keep posting and really look after yourself
Good evening @Melmc, and everyone else, I hope that you are okay and not worrying too much about Thursday’s BMB.
I was diagnosed with Essential Thrombocythemia (Essential thrombocythemia (ET)) just over 5 & 1/2 years ago, with my platelets over 1200. Since then, and with regular Pegasys injections they have reduced down to more acceptable levels, varying between 420 up to 600+ and back down again without any changes to medication. It seems that they rise when I am feeling ill, or more ill than usual, or when my fatigue levels have gone down through the floor, which is most of the time. I still manage to work full time, just, but that is out of necessity rather than free choice!
So in answer to your question, yes, my platelet count can, and does, rise unexpectedly, but usually when I am suffering poorer than usual health.
As an add-on, my 1st heart attack (so far!) was just 6 years and 1 month ago yesterday.
Life is what it is.
Stay safe, take care, carry on smiling and remember to be kind to yourself.
Thank you everyone for replying and your kind words, I hope then can finally give me a reason I feel the way I and why my platelets are on the rise. I almost feel embarrassed these saying when someone asks am I sick again:flushed:
Just wanted to update you, had bmb today, they could only aspirate the bone was to tough and the tool the used slipped the pain the had to keep me til the end of the day as I couldn’t put any pressure on my leg. Do you think they can get all the information they need from just the fluid im not sure I could go thru that again. They don’t sedate or give gas and air just locally numb it.
Oh @Melmc what a really horrible day you have had.
Fingers and toes crossed for you that they have the information they need.
Be ever so kind to yourself, you have gone through a lot today.
Please do update us and really look after yourself xx