Hi Junep, I too am sorry to hear you had a stroke 2 years ago but glad to hear your ECG was fine. It sounds like you are in the system already. When I was first diagnosed 20 years ago my platelet count was 1500./The haematologist had to run a series of tests first to find out why and initially I took a baby aspirin every day. When they established my problem I was then put on hydroxurea so my count came down. I have an appointment every 8 to 12 weeks now(telephone consultation at present) but my count was 450 last time, but that is good for me! My count can fluctuate from 400 to 700. I think what I’m trying to say is we are all different and like Maureen I have complete faith in the haematologists.

Thank you so much,that is very reassuring.Stay safe and well in these unusual times.x

Hi,I am going to see haematologist on 31st of March.What can I expect from my initial visit,please ?

My last blood test  platelet count was 413 .

Hi Junep

Firstly, I am sure your haematologist will be very reassuring.  He/She will look at your history, probably ask you questions and hopefully will answer any questions you may have.  If they need to check further to see why your blood tests are fluctuating, they might do some tests. When I attended the Haematology Clinicnearly 25 years ago, because my platelets were highish, I was asked if I would agree to have a lumbar puncture carried out, now or on another day.  I agreed straightaway - no need to wait and have to visit the hospital again!!  I laid on my stomach, they put a local anaesthetic into my spine and extracted a sample of fluid.  I cannot deny that it is a bit painful, but it soon passes.  This is a diagnostic test which shows what is in your spinal fluid and will confirm what condition you have and what specific treatment you may need.  Lastly, trust them - they are there working as Haematologists because they want to help you to feel and be better.  Let us know how you get on!  Maureen 

I haven't posted anything for a long long time , what you write on here Maureen seems to echo everything I have/do , so thank you. Just a thought going through my mind at the moment ( my son put it there ) last blood test 2 months ago was 490 - pretty good for me , it doesn't normally go much lower , in fact before Christmas it went up to 595 so my consultant increased my Hydroxycarbomide  2 everyday and 3 on a Sunday , as you see it came down so I was happy.   However last week for the first time ever in 15 years it went down to 381 !  Classed as normal . I am buzzing  but my son thinks it's the COVID jab that's done this.   Has anyone else experienced a drop in their results , or is it wishful thinking lol . Kind regards Jane 

Dear Jane  I had my first Covid jab on 9th January and had a blood test, prior to a Consultant phone appt on 20th.  My platelet result was as usual and I didn't notice any difference in how I felt.  I have noticed in the past that my platelet count seemed to go up a bit, if I had recently had a bad bruise or a deep graze, or was not drinking enough as the weather got warmer.   My second jab is this week but I don't have another blood test until May (every 4 months), so I suspect any reaction will have gone away by them, even if there was one!  As your platelets are lower than usual, but still deemed normal - just enjoy the feeling of relief and 'keep taking the tablets'!!  Here's to our first cuppa with friends in the Spring garden.  Keep safe. Maureen

Hi,

As far as I can remember my consultant as me lots of questions and he then different blood tests done to rule out any other infections. He then wanted me to have a bone marrow biopsy, which was done on another day. The results of the biopsy confirmed that I had ET. When I was first told I must admit I was scared and worried. However once I was put on the medication my platelet count came down and I have never felt unwell with ET. 
My platelet count over the last 20 years has ranged from 350 to 800 but I would say on average 500.

I know it's easy to say but try not to worry, you are in good hands. Let us know how you get on.

Vanessa

Hello everyone, I hope you're all well (as can be anyway) 

I'm 34 and have recently been diagnosed with ET after having various tests due to my platelets being over 1000. I still have a lot to learn and it all feels pretty uncertain but I'm hopeful that other than regularly feeling like a pin cushion, I can live a fairly normal life. 
 

In 2014 I had a blood clot on my brain (celebral venous sinus thrombosis) which they thought was down to the contraceptive pill at the time. For that reason I'm being treated with Peg inferon Alfa which I have to inject once a week and blood thinners. Is anyone else having similar treatment?
 

I've read a couple of things where people have been given a life expectancy of ten years so that's scary but hopefully with treatment and monitoring this won't be the case. This is all new to me at the moment and I'm not too sure how to feel but just trying to deal with it the best I can. It would be good to chat to people going through the same thing 

Chelsey 

Hello Chelsea HP

I was diagnosed in 2000 and have taken drugs to reduce the platelets ever since.  My initial platelet count was in the 700s, but now is always between 300 and 400.  I feel as well as I expect to, as I am now 83.  However, as my grandmother lived to 96 and most of her children, including my mother lived over 90, I have a way to go yet and certainly extect to make 90..  Try not to worry - the doctors are there to do that!!  Just enjoy the Spring and your family! 

Maureen

Hi Maureen, 

Thank you for your reply. I'm glad to hear it, long may it continue. 
I'm a natural worrier anyway and suffer with health anxiety so it was a struggle at first but it could be worse I suppose. I hope you have a lovely Easter 

Chelsey