Hi. 39yo F. For the past few years my platelets have gradually risen. All of a sudden the past few months they have become high moving from 460-520 since October. My C reactive protein was 12 at my most recent test. Needless to say I’m scared. I’ve had neurological issues like balance and heavy fog. Where do I go from here? I had a follow up doc appointment but the doc was off sick so a nurse practitioner called and she had no clue what to do. They recommended bowel testing and said if it came back clear then I would be referred to haematology. My sight is also worsening but if I go to docs they will blame it on raised CSF so it’s pointless
What should the doc be doing? I’m so lost in my treatment paths and don’t know what to do.
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Hello there @Haylz124, welcome to the forum. I’m so sorry you had reason to find us here and those symptoms you’re experiencing, brain fog is no fun. I can also empathise with your anxiety at receiving test results that are concerning.
I’m not a doctor but there’s a couple of ways you could seek medical information regarding those test results that are worrying you. We can’t really offer medical advice here as individuals, but the specialist @BloodCancerUK_Nurses are really the best people to speak with as they are experts on all things related to blood disorders and are lovely. Their free number is 0808 2080 888 and you’ll see them around the forum too.
If you find your usual doctor is not heeding your concerns, there is always NHS PALS (Patient Advice and Liaison Service) that offers confidential advice, support and information on health-related matters.
I’d also suggest trying again with your doctor, explaining that the nurse practitioner wasn’t able to explain what’s going on and that you’re left with anxiety about blood cancer. Your doctor should be able to reassure you about next steps, if any are needed.
Please try to hold out hope though. For what it’s worth, my own diagnosis that brought me here was found due to an unrelated infection that caused my platelets to spike. Our platelets and other blood cells can become elevated from infections and other non-cancer stuff.
Do let us know how you get on @Haylz124.
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Dear @Haylz124 ,
Welcome to our forum. I am sorry to read about the symptoms you are having and the concerns you have which have not been addressed. It is understandable that you worried. As @Duncan has mentioned, please do not hesitant to contact us if it would be helpful to talk things through on 0808 2080 888. We would be very happy to help and support you.
I would suggest making another appointment with your GP and discussing your concerns with them. It is good that they have discussed a referral to haematology. If you have not done so already, it may be useful to say to your GP it is blood cancer in particular that you are worried about, as this is sometimes not at the forefront of their minds. Many signs and symptoms overlap or are common in other illness/conditions. We would encourage you to tell your GP that this is what is concerning you and then they can complete the appropriate tests to hopefully provide you with reassurance. I would also suggest requesting another blood test to see what what your platelet levels are. Have you started on any new medication recently or had any recent infection or virus? C reactive protein (CRP) is a blood test that measures infection and inflammation in the body and can fluctuate.
You may find our 'Blood cancer symptoms and signs’ page helpful to read through as it contains information on what to look out for, as well as prompts for questions you might like to ask your doctor.
As it explains on the webpage:
Most people who have symptoms described on this page won’t have blood cancer. But it’s worrying to have symptoms you can’t explain, and important to find out what’s causing them, if only to set your mind at rest.
Look after yourself and let us know how you get on.
Fiona (support services nurse)
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