Hi I’m Sue, I had routine bloods last month which flagged high platelets of 575, I spoke to my GP who told me she wasn’t worried as I had always had high platelets ranging up to 750. I told her I was worried as I have had blocked artery in my leg for a few years now and get bad headaches, blurred vision and my bones ache , I have just been told I’m borderline diabetic also, my family history is my dad had type2 diabetes , 2 heart attacks and then a stroke he died from. My mum had a stroke , my sister has not long had surgery on a blocked vein, she said she’s had high platelets also. I am on aspirin , statins, 3 blood pressure tablets as they thought that was why I get headaches but I still get them . I have a appt I’m may with haematologist and I’m have bloods done this week for that appointment, obviously reading everything has made me very worried and anxious now, any advice would be great .
Thankyou
Hi @Sue66 a great big welcome to our forum and I think it is completely natural to be anxious and worried as you have not got any diagnosis yet.
I am not a medical person but it appears to me that your GP knows your complex medical and family history and considering a lot of options and tests.
The waiting game is the worst feeling and part and I feel for you, but can you think of things you can do at the moment to divert your mind and be very kind to yourself.
If you would like to talk to someone the Blood Cancer UK support line is on 0808 2080 888
Please let us know how you get on and look after yourself
Welcome to the forum @Sue66. Waiting on test results and for appointments is an anxious time. @Erica has given you the telephone line do give it a call the team are fabulous. Do let us know how you get on we are all here for you.
Hi so update I saw haematologist who said all results are negative , I now have to have a CMLdiagnosis , the form saying for thrombocytosis investigation.
I am still extremely tired, have headaches, my bones ache , so will have to see what this result is .
Thanks @Sue66 sorry to hear that you still have not got a definitive diagnosis and are feeling so rotten, please do let us know how things go.
Be kind to yourself
Hi @Sue66, thank you for posting. May I ask how you’re doing? I’m sorry you’ve been dealing with so many troublesome-sounding symptoms. It’s so normal to be feeling worried or anxious when you’re going through the process of having tests- it’s not easy, especially when you aren’t feeling well. Do you mind me asking what your follow-up plan was from the haematologist? Please don’t hesitate to get back in touch with them if anything was unclear at all.
Please also know that our Support Team are here for you if you’d like to speak with someone or need a bit of support. We can be contacted on 0808 2080 888 or support@bloodcancer.org.uk.
Take good care of yourself.
Best wishes,
Tanya.
Hi Sue
I have just had a diagnosis, having had high platelets show up in pre-op blood tests. I did more blood tests, saw a haematologist and then at my next appointment at haematology had an MPN diagnosis confirmed- not sure which one yet as need results of a bone marrow test taken today. This has been an anxious time, less anxious since I got a diagnosis. The blood tests you have had are probably to rule out different causes of thrombocytosis and see if it is primary- your bone marrow making too many platelets, not as a reaction to an infection or inflammation or other disease, but because there is a disorder with the way the bone marrow is functioning. Sorry if this is all stuff you know. I find it really helped me to read up on thrombocytosis so I knew what could be going on, and had a fair idea when first told what it might be at my 1st haematology appointment. It helps to have some questions ready to ask in appointments, maybe write them down as it is difficult to think clearly when worried.
Hope you get everything clear soon, and are able to move on from the limbo that waiting to know causes. Waiting is so difficult, isn’t it? Best wishes
Hi @Fem how are you feeling now that the MPN has been diagnosed and what is the next step?
Look after yourself you have had a really anxious time.
When I got the MPN diagnosis, officially, a week after my first appointment with a haematologist (when it was confirmed that this was my most likely diagnosis), I felt relieved and less anxious than I had been for almost a month (since seeing my pre op blood test results and being referred to haematology by my orthopaedic surgeon). I have felt what seems similar to grieving for weeks- for myself as I was before I knew something was wrong with my blood count/bone marrow. I experienced this pre-grieving when my Dad became more and more ill and less and less himself in the last year or so of his life. I don’t think this is a bad thing, it helps adjust to a new reality and move forward.
We lost my Mum to cancer when she was 53, my big brother to a heart attack at 54- I have outlived them by more than 10 years and 9 years respectively, so I already felt privileged to still be around. Our son just had a baby, our first grandchild, 4 weeks ago- so I have had that joy and distraction rolled into the anxiety and surrealism of the MPN diagnosis process. I am feeling privileged to be able to meet my grandchild, something my Mum didn’t get a chance to enjoy- so I can’t feel too hard done by to have the diagnosis, and just want to get on with my life as well and as mindfully (excuse that expression, but it seemed the best word for how I feel) as I can, and hope for little/no progression.
Sorry to ramble on!
Fem
Hi @Fem, you have not rambled on at all. found your post fascinating and your insights into pre-grieving, so, so true, and I think many of us really isolate through those feelings of loss and grieving as well. There are so many losses of what we thought would be for us.
My parents also died at 66 and 71 yrs of age, so I feel grateful to have surpassed those ages.
I also feel very grateful for our forum.
However I think I am so, so grateful for what I do have now and they are not materialistic things, the best things in life are often free.
As for your your grandchild, that is truly is a priceless gift.
Look after yourself
I am still awaiting results for jak2 and cml blood tests, I’m getting tireder, my bones ache, my left lower leg and ankle swell up every day , I have constant headaches , I just feel generally low so need the results or a answer .
Oh @Sue66 I do feel for you. I am not surprised your symptoms are making you feel low
The waiting is so, so horrible.
Perhaps if you think that you have waited past the time you were told you would have to wait for results then why not chase them up.
Now is your opportunity to write down all the symptoms you are experiencing, their severity and impact on your lifestyle.
Then you can feel prepared for your next appointment.
Unfortunately I have found that I have done a lot of waiting since my diagnosis.
Some people have found the mind and emotions section of the Blood Cancer UK website useful. . Blood cancer: mind and emotions | Blood Cancer UK
If you would like to talk to the Blood Cancer UK support line they are on 0808 2080 888
Please let us know how you get on and be kind to yourself
Hi well I got all th jak 2 results back clear , I’m now waiting on cml bloods which are due back on 11 th July,
It’s just worrying having these symptoms and family history and drs aren’t seeing why I’m worried
Hi @Sue66 that is great that your jak2 results are clear.
Unfortunately you are back in the waiting game for your cml bloods, it is horrible.
As your your worrying that the doctors don’t see why you are worried,.
I have found that sometimes others do not realise why we are worried, but very personally I think it is because they have not been in that situation so cannot imagine it.
I have found that writing my worries and concerns down and making sure I get my points over and answers to my questions before I get up to leave helps me.
Please let us know how you get on and take lots of care of yourself, worrying is natural as long as it does not completely obsess and take over your life.
Hi @Sue66,
being worried and anxious about your blood tests is entirely normal. I 'm not sure what planet your GP lives on. 11th July is a bit of a long wait still. Can I suggest you and keep yourself busy and the time will pass quicker than you expect.
Best wishes
Helen
Hi well my Chronic myeloid leukaemia blood test has come back normal, so nothing on blood tests which is good, but will calves swelling and painful and headaches and aching bones , I do not know where to go , I haven’t heard from haematologist either
Hi @Sue66 that is good news that your blood tests have come back normal but it does not get to the bottom of your symptoms.
Perhaps you go back to the medical person that is trying to get to the bottom of your symptoms. Don’t forget the pleasantly assertive and have all your questions written down and perhaps not to leave until you are satisfied on the way forward.
We are complex beings.
Perhaps even a little celebration is in order to celebrate your normal blood test results.
I celebrate everything.
Look after yourself and please keep posting, if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888
So 2024 is here, more blood tests , platelets have gone up 20 points to 580, spoke to haematologist last week, they’re are monitoring me, more bloods in may then if they’re still high she mentioned about having a a blood marrow biopsy, what are peoples thoughts on the biopsy , thanks
Hi @Sue66 - sounds like it’s been a busy start of year for you. Good to hear that you are being monitored.
In terms of the BMB… I’ve had a few since my Chronic myeloid leukaemia diagnosis almost 12 years ago. I found the prospect daunting at first but necessary to provide the deeper info needed to better understand what’s going on. I also found that the anticipation of having it done was actually greater than the procedure itself, which I didn’t find too bad as it is done in the back of the hip with a local anaesthetic. For me, it was a bit uncomfortable and a little sore afterwards. I did take a friend with me as a distraction too!
Let us know how you get on with your tests and do shout with any other questions 
Hi @Sue66 glad you have posted again and that you are still being monitored.
As for a bone marrow biopsy I think peoples experiences vary a lot and @MaggieLT has given you great tips.
I attach a link from the Blood Cancer UK website which might also assist
Blood cancer tests | Blood Cancer UK
If you are anxious then perhaps let the medics know and the more you can relax the better.
I await others experiences, please do let us know how you get on and look after and be kind to yourself