Hello Beatricex

I have ET, which is my body making too many platelets and the production of these is regulated by hydroxycarbamide daily for the rest of my life.  They believe this is caused by one cell changing its DNA, which spreads to the others in my bone marrow.  Looking at the web, thrombocytosis is also a high platelet count, but the indication is that it is called thrombocytosis when it is caused by an infection or other factors..  Ask you doctors to explain the results of your blood tests and scans - they know what they are doing.

Hi Beatrice, try not to worry, i know its easy to say but it sounds if the health professionals are still putting the jigsaw puzzle together. Sometimes you can put 2 and 2 together and self diagnose almost everything especially with google. There are so many blood conditions and ofcourse every illness can have an affect on bloods, high platelets for example can be due to infection.

When i received my diagnosis i was given lots of information and support, make a list of questions and get answers direct from your consultant as they are the medical wizards and know your individual health   - hang on in there and try to keep positive - Best of luck x 

Hi I have only just found this forum and am finding it really encouraging. I only found out I had a platelet problem as I used to be a blood donor and the day after giving blood I was told I had a problem.

After several tests, including a bone marrow biopsy I was told I had ET. I can remember being totally devastated as up to that point I was a very healthy 49 year old. I had no symptoms even though my platelet count was 1500.

After the initial diagnosis my consultant only put me on aspirin but told me to report back if I started to get pins and needles in my fingers or severe headaches. I did start to get tingly fingers 6 months later and I was then started on hydroxurea which I have been taking for 19 years. I go to see the consultants every 2 to 3 months who check my blood count and adjust my dosage if necessary. 

I do understand your anxiety but I do try to look at things positively. I get my blood checked every 2 to 3 months and see a consultant at the hospital. They can tell a lot from your blood so if anything else is wrong they would pick it up right away.

I am now 67, I retired from work 5 years ago to look after my grandchildren. I am very active and thankfully look and feel well!  I was also very encouraged by Maureen v post as she is 81 and looking forward to the next 10 to 15 years!

Andnessb

Thank you for your info and hope you are doing well.

My mum is recently been diagnosed with ET and she is prescribed hydroxyurea and aspirin and her platelets was over 800. She feels better after a week of taking the medication. 

She is told to take 500mg one a night, how often do you take hydroxyurea, what strength is it and whats your platelets level now?  Of course only reply to any bits you are happy to. 

Thank you again. 

And thanks everyone for sharing info..

HMD

I take 500mg in the morning, (together with other stuff I need) and my platelet count stays between 300 and 400 (364 at last check).  I see my Consultant every 4 months for a blood test and another supply of tablets.  Hydroxyurea is also called hydroxycarbamide, so don't worry if you notice this - the drug isn't different, only the name used. 

Glad your Mum is feeling better already.  Tell her to just 'keep taking the tablets' and get on with her life - there is still lots to do and experience.

Maureenv

Thank you so much. I will. 

Hi, I take 3 x500mg for 2 nights and on the 3rd night I take 4 x 500mg together with aspirin. My blood count does vary, currently it is at 400 but at times it has gone up to 700. 

There doesn’t seem to be any explanation for why my platelets vary so much and luckily I don’t feel or look poorly. The only thing I would say, and I don’t know if it is a coincidence, but if I am under any stress my platelets go up!

I’m so pleased your Mum is feeling better.

Hello all, looks like I'm the only Male here, I got told 3 years ago I have ET after my bone marrow was tested. My platelets were around 1400. I am now injecting myself with pegasys interferon every week. The tablets most of you seem to be taking didn't work for me. Only negatives are the tiredness, dizzyness headache and tynitus. But I have been told it Doesn't affect the time we have on this planet, so I can put up with the rest, good luck with it everyone. X

Hi Martini54  Yes, I was told that the ET itself does not affect your life span, if you are treated to keep your platelet count down.  I did take Anagrelide, but that affected my heart - apparently it does not affect everyone's heart though.  I now take hydroxyurea (hydroxycarbamide) and have done for the last 18 years.  I see an Haematologist every 4 months and get another batch of pills.  My GP gives me stuff to help my heart work as well as it can, but I am still here, obviously!!  I hope that at some time in the future, they can find a pill that does the trick for you, so you can stop being an human pin cushion, but it is working, so well done for putting up with it.  Lastly, interesting that you mentioned the tinnitus.  I have been told it is because I listened to loud noise when young, but I didn't very ooften.  It is gradually getting worse, so that I now have it in both ears, but luckily sometimes it is fainter than others.  I wonder if it is linked.  xx

Hi Maureen, The hospital told me the injection can cause tinnitus, it's annoying but can live with it. Not a lot of choice :D keep smiling x