Raised platelets for 6 years feel I'm being fobbed off

Hi I’m a 33 year old female that has recently been referred to the hematologist with abnormal full blood count.

When looking at my health record I can see that my platelets have been raised above normal level for the past 6 years.

Recently I went to the doctors with pain and inflammation in my fingers and had a blood test with abnormal full blood count.

Rbc, white blood cell and platelets all raised for my last 2 blood tests. Consultant sent for JAK2 test which came back negative today. They are now checking my iron again with the explanation that low iron can cause my platelets to rise (there currently just under 600). But my ferritin levels are normal.

Also my serum c and epo results are both normal. The doc said if my CT scan and iron are normal she will look at discharging me. Am I right to think that I shouldn’t be discharged untill they actually find the reason for my raised platelets? Also as a side note I have had a couple of dizzy episodes and one occurrence of visual issues as well as night sweats for the last 2 years

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Hi @Lsheppard a great big welcome, it must be an anxious time for you, I think the not knowing is a scary time.
Perhaps make sure your doctor knows all your symptoms, how long you have them, their severity and the impact on your life.
Ask the doctor all the questions you want answers to and tell them your concerns about being discharged until your tests are normal and your symptoms are addressed.
You can always ask for a second opinion or, at your cost, a private opinion, if that were possible.
I believe in being ‘pleasantly assertive and persistent’.
If you would like to talk to someone the Blood Cancer UK support line is on 0808 2080 888.
Please do let us know how you get on, really look after yourself and keep posting

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Hello @Lsheppard and welcome to this forum. I was found to have high platelets and other abnormal blood counts at a similar age to you. That was thirty years ago and not so much was known about these things then. There are other gene tests that can be done apart from JAK2. In my case I am CALR positive. I was diagnosed with a Myeloproliferative neoplasms (MPN) which had features of Essential thrombocythemia (ET) and Myelofibrosis. I now no longer have high platelets as my condition has changed over the years. Therefore if you are concerned and would like further investigations I suggest you ask your doctor. As @Erica says it is important to explain the symptoms you are experiencing. I wish you well. Warm wishes, Willow x


Hi @Lsheppard sorry you’re not getting any answers. Im exactly the same but 4 and a half years of high platelets. Mine are just under 600…they’ve been a lot higher than that. Like you I’ve had the jak2 test, Bcr abl test, ferritin test, folate test, rheumatoid arthritis test amongst others and all come back negative. My haematologist consultant said as long as my platelets are high then i will need to have regular blood tests. I think you should be the same. There is a reason why they are high and until they find it then you should at least have blood tests. Hopw you sort it out.