Hi im a 54 year old female. 4 and a half years ago i was feeling ill, body aches, constant cold, breathless, bone pain, fatigue and feeling down. Gp ordered blood tests. They came back low blood count, high platelets which were 700+ since then they’ve been slowly comimg down but not normal. Refered to haematology, had tests for leukemia, genetic tests for cancer, rheumatoid arthritis, amongst other tests but all negative. Was on iron tablets but not anymore as that improved. Now after 4 and a half years they have elevated again now they are just under 600 so back to square one. Consultant has spoken about bone marrow and biopsies but he said they will keep an eye and go from there. Don’t really know what to do next. Its been a long worrying time. Thanks
@sharon1 sounds like you have a hide and seek one and no doubt one that has you stressed out( which is not a good thing in itself).
No doubt after people have recovered from last night’s storm and prepared for tomorrows one, someone will give you lots of pointers on what to help you move forwards.
The site does have some great advice like this :
as well as the many who can share advice and tips from their own journey with cancer.
The not knowing is always the hardest part, but you are still a spring chicken as it were, so my advice would be to just try and stand still for a moment, take a few deep breathes and then “what you can take control of” tick list.
Thank you. Its just the not knowing is the worrying part
Hey there @sharon1, really glad you found this forum and that you’re sharing your concerns. Like you say, the not knowing is so worrying, but it does seem that finding others here who experience similar concerns can help relieve some of the anxiety.
I had similar elevated levels of platelets to you for a year prior to my diagnosis with Polycythaemia vera (PV), but platelets can be high or low depending on infections and inflammation going on in our bodies. It could be that you’ve had infections unrelated to the big C that your body has been fighting off, hence the elevated platelets. I’m not a doctor but have been on a personal crash-course relating to blood disorders since my diagnosis, as you can imagine!
Really you need your specialists to let you know what’s going on. Perhaps you could tell them how the not knowing is affecting you all these years later and they may share more about your treatment? Sometimes our treatments can be simply “watch and wait” where our doctors know there’s something not quite right but tests have yet to find out what that is, or tests show there’s nothing to be concerned about for now.
Let us know how it goes and if anything changes. Perhaps ask your consultant what you can be doing to be proactive with your health while you hold those worries. Has there been any mention of taking aspirin to thin your blood while your platelets are higher?
Hi Duncan, thanks for the reply. Sorry you’ve been through similar but hope you’re on the mend. The only treatment I’ve had is iron tablets. They bombarded me a few years ago to see if that would bring them down, but it didnt. No mention of aspirin. I’ve recently been prescribed Amlodipine as my blood pressure was 201/102. That seems to be controlling it at the moment. History is…
December 2019 flu like symptoms for 12 weeks, chronic fatigue and aches and pains
May 2020 blood tests revealed high platelets over 700. Iron tablets and monitoring.
November 2021 covid platelets fluctuating rederred to haematology. Over the years they’ve done numerous tests but nothing showing up.
December 2022 covid again platelets still high
Platelets started to come down june 2023 so discharged and referred back to gp for monitoring.
November 2023 high blood pressure and covid again. Platelets rising again.
So don’t really know whats going on, all i know is i don’t feel right and haven’t felt right for years.
Aw thanks for your concern, @sharon1. Dare I say it but I’m doing okay—got my haematocrit down into the normal range for Polycythaemia vera (PV) survivors over a few months so that’s keeping me optimistic about my treatment!
Looks like you’ve had all sorts of testing for years. So sorry to read you’ve had COVID-19, maybe twice? Wonder how that affected your test results and platelets. Our immune systems are so closely related to our blood cells and vice versa. Have you been advised about ways to lower your blood pressure, aside from that Amlodipine? I had a heart attack many moons ago and have since tried to eat more healthily and exercise by hiking, which together seem to have helped lower my blood pressure.
Yeah covid 3 times. They don’t really say much, they dont think the blood pressure and platelets are linked as the high platelets came well before the diagnosis of high blood pressure. There is talk about me having a bone marrow biopsy but they keep saying i should be ok until im 60. Im 55 this year, so looks like they don’t see me as at risk yet. Glad you’re controlling it, they can’t treat me until they find the cause…apparently I’m a medical mystery lol.
Oh goodness, poor you with that COVID-19!!! Could that have left you with a weakened immune system and stronger reactions to infections? Long COVID surely affects blood pressure and so on…
I get the sense that bone marrow biopsies are pretty definitive and used as a main way to diagnose blood disorders as they get right at the source of where our blood comes from when analysing those biopsies.
After my BMB my Polycythaemia vera (PV) was diagnosed from that procedure. Perhaps you’ll have it done to rule out all various blood disorders. I’d say it would be worth it despite the potential discomfort of the biopsy procedure. Maybe don’t google BMBs though, as there are a lot of horror stories out there!
I have told them that i don’t mind having the bmb if it rules out anything nasty. I hate needles but if it means getting some answers, then I’ll tey anything. Youve been through a lot by the sounds of it. I try not to use Dr google lol…I’m a bag of nerves as it is. As for the immune system, becasue the high platelets came first they can’t really say its that. as for covid, i didn’t have it that bad compared to some people. I was lucky.
Hi @sharon1 I am so glad that you have found us and posted.
Yes, the worry of not knowing is absolutely horrible.
@Duncan and @clickinhistory have given you great responses.
As a non medical person I have come to realise that we are all very unique, complex beings and so many things are interconnected, especially with our immune systems and platelets.
I was diagnosed at 53 yrs old.
It sounds as if you are on a system called ‘watch and wait’ or ‘active monitoring’.
I have been on that system for 20 yrs and a few years ago my consultant referred me back to my GP to monitor me and if they are concerned about changes then I could be fast tracked back. This brought up a lot of feelings and thoughts of abandonment etc.
Actually it is working well for me as my GP surgery is really local.
I am sorry to hear that you have had Covid 3 times, I wonder what that has done to your immune system. I find I can get run down really quickly, but it takes me a long time to build myself up.
it is natural to worry about the unknown, but I am try to get on with my life and I am a Pilates girl and I also believe in fresh air and reasonable exercise. Sometimes I need a nap but that is OK.
Please do keep posting how you are getting on and really look after yourself…
p.s. I have never had a BMB
Thanks Erica, I’m glad i found this forum. Gosh 20 years?? As you say everyone is different but its good to chat to others in similar situations. I don’t let it rule my life…i can’t. I have too much going on. As you say, the gp is local and it was my choice to be referred back to my gp as i was struggling to get to appointments with the consultant and felt that the tests can be done locally. There’s a lot going which i don’t really want to go into but i agree with all of you that have replied…i maybe need to look at diet and exercise as a way of improving my health. Thanks.
I would formerly request a bone marrow biopsy. It was just over 3 years ago that my haemotologist ordered a bone marrow biopsy thar confirmed I had Cronic Lymphystic Lukumia with P17 Deletion and given 6 months to 2 years to live.
Fortunately I qualified for a global trials program and for the past 3 years of a new generation of medications .
I have been having bone marrow biopsies initially every 6 months but now every 12 months.
Importantly it has been the bone marrow biopsies that first confirmed that I was in deep remission 12 months ago and recently confirmed that I am in deep remission.
In my humble opinion and my personal experiences it is my opinion that if the bone marrow biopsy hadn’t definitively confirmed my
Chronic lymphocytic leukaemia (CLL) I would not be alive today.
Oh gosh, JohnCP I’m so sorry to hear this, but so glad you had the treatment and its working for you.
They’ve done a lot of blood tests, too many to remember and thankfully all negative.