Hi im a 55 year old female back in December 2019 i started feeling ill constant colds, cough, aches and pains, flu like symptoms, short of breath, tingling in fingers, fatigue, dizziness, itchy skin, pain in my bones on right side of rib cage and hip and generally feeling unwell. This went on for months so in april 2020 i had several blood tests. Tests revealed high platelets, slight low iron and slight elevated liver. Since then ive been still feeling pretty rough off and on. Platelets have stayed high since despite liver, iron and kidney tests normal. Refered to haematology and they did scans, x rays and jak2, bcr abl, calr and all negative. The doctor said my platelets havent been normal for 4 and a half years, could be longer but wasnt tested before. They keep saying review in 6 months more blood tests but no reason why my platelets are high. They are now nearly 600 they started to come down a few months ago but never got to a normal range but now they are back up again. They mentoined a bone marrow biopsy but said that due to my age it was unlikely that i need one yet. As you can imagine its worrying, i know my genetic tests are negative but why all these symptoms? I now have high blood pressure started taking amlodopine which is working recently a routine urine test has come back with microscopic blood in it. Could all these be linked? Just dont know what to do, how long the worry will go on for. Am i worrying about nothing? Thanks
Yes, @sharon1 Yes, of course it is worrying, living in limbo and not knowing is scary.
My mind has a field day at that point.
You have been going through this since before Covid, which of course mucked up all our tests and appointments, but it is a very long time.
As for your recent urine test with microscopic blood in it.
This might be due to something completely different or not, we are very unique complex beings.
My blood test results do fluctuate due to many things.
I always want to attribute everything to my blood cancer, but sometimes it isn’t connected.
We cannot tell you if you are worrying about anything or nothing that is one for medical people.
What is happening about your urine sample result?
I write down all my fears and questions before appointments and be pleasantly assertive and not leave till I get answers and/or the way forward.
Please do let us know how you get on and really look after yourself
Hi Erica, thanks for the response. They tested my urine sample for bacteria and it didn’t show any so they have taken 4 altogether and each one has showed microscopic blood. They are referring me to urology but said there will be a wait. I think because my genetic tests were negative they don’t seem as concerned but when i say to my consultant if I’m not having treatment and my platelets are still raised why am i still having to repeat the blood tests? If i say to them well it can’t be anything bad they just reply with but your platelets shouldnt be this high for this period of time. So in one hand they are saying everything is fine and don’t worry then they are saying well it is a cause for concern. Last time i went they said he couldn’t justify performing a biopsy but then he said i am wondering if you need one because they are not coming down. So then that worried me. I havent had a diagnosis as they keep saying they dont know whats wrong with me. Thanks
Hello there @sharon1
It is understandable that you are worried especially as you don’t feel that well. May I ask whether you iron has been replaced with supplements? I only ask as iron deficiency can lead to secondary thrombocytosis. There are other reasons which include:
- Chronic inflammation (for example, rheumatoid arthritis or systemic lupus erythematosus).
- Drug therapy (for example, corticosteroids).
- Haemolysis.
- Iron deficiency — this is the most common cause of secondary thrombocytosis.
- Severe systemic infections (such as pericarditis or endocarditis).
- Some specific cancers.
- Splenectomy, hyposplenism.
- Surgery, bleeding, and other trauma.
It is very reassuring that all your scans and genetic tests are normal and I am sure that the Haematology team would escalate their tests if they felt it essential.
If you do need to talk anything through do please get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
Hi Gemma, my iron was slightly low but they gave me a high dose of iron which didnt do anything to my platelets…they still kept rising. They stopped the iron supplements as they said my iron count wasn’t low and i didn’t need to be on them anymore as it was normal. Ive had blood tests for all the genetic tests, rheumatoid arthritis, ferritin levels etc. Ill try to add a pic of what they have tested so far but they are all normal.
Too medical for me I will copy your response to @GemmaBloodCancerUK
Thank you for sending these through @sharon1, looks like the team have been thorough and have addressed the iron issue.
Regarding your symptoms, the high blood pressure and small amount of blood in the urine, these may be unrelated to your raised platelet count but they do still need addressing by your GP. Blood in urine can be a sign of a urinary tract infection but I would expect more symptoms along side this, do you have any other symptoms?
As mentioned before, we would be very happy to talk things through over the phone if you should wish? I would be reassured by your Haematology team’s investigations but I would still address your symptoms with either your GP or the Haematology team.
Kind regards
Gemma
Thank you Gemma. My urine was checked for infection by the hospital and that came back negative. Yes i agree the haematology team have done all the tests possible, the only 1 that they said that they might have to do is the biopsy. Thank you, my gp is repeating my bloods again in 3 months which will be april. Then he will contact haematology if my platelets are still raised. Its difficult as I’m at the age for menopause and i keep asking if a lot of my symptoms could be related to this. They said they don’t want to assume my platelets are high because of this incase its something else. They keep saying they would have expected my platelets to come back down as its been 4 and a half years but they are not. Thanks
Hi @sharon1 yes, it really seems that your haematology team have done all the tests possible and that you are being monitored, but really look after yourself and please do keep posting.