Hi Mark

That is good news - your platelets down to 390.  Mine, also on hydrocarbamide, have fluctuated between 300 and 400 for the last 20 years and the docs seem happy with that.  I actually have not actually seen a Consultant for 2 years now.  I have blood tests every 4 months and then am phoned by the Consultant Haematologist and asked how I am.  As my condition does not change, that suffices.  I have no doubt that, were the blood test show something untoward, then they would make an appointment for me to be seen.

As they say - keep taking the tablets and have fun.

Maureen V

Hi Mark,

Thank you so much for replying. I completely agree about not googling, i am going to try my hardest now not too and leave it until my appointment. I have started to write down questions too for my appointment incase i do have ET. I am really glad to hear the medication is bringing your numbers down. Do you have any side effects with the medication? Do you take aspirin alongside? 
Did you have any signs of ET, when i look over the symptoms i do have a couple including headaches. I have daily headaches, i have had an mri which was clear. 

My next appointment is not until September 23rd with the results. 
 

thank you again
 

Laurencs899 

No problem with the questions, unfortunately I still not getting the email alerts. So my apologies for the late check in.

Side effects for me:

Unsure if hydroxycarbamide related or just getting older I get tired earlier in the evening. 

I use to take aspirin, but was moved onto clopidogrel instead due to gassy feeling.

With regards to symptoms I had nothing. My ET diagnosis was discovered the night before my Meningioma brain tumour surgery. Due to the high platelet count and diagnosis I was sent home.

Unfortunately for me since last year with Craniatomy surgery, Essential Thrombocythemia being discovered I have rode and still ride a wave of anxiety. 

Symptoms of anxiety and Essential Thrombocythemia have some similarities. So I've never been sure of what may of caused my tingling in hands, which I did suffer on and off.

If you cannot wait until September 23rd for a consultant call regarding your bloods. I have in the past phoned my clinical nurse and booked in for a blood test earlier. The clinical nurse then give me a platelet count a day or 2 after. This keeps my anxiety and worry levels down.

All the best

Mark

Thank you Mark that really helps. Anxiety really is the worse, i have suffered with it on and off for many years and like you sometimes i think is this something more or is it anxiety, such as dizziness i struggle with but sometimes i ask myself is this my anxiety!

I did think about calling the haemotology department and explaining how anxious i am for the results and see if they could tell me sooner. 
 

Thank you again

Hi Laurencs899 

Remember it's your body, and your more than entitled to ask for a check up when you want.

All the best and keep us posted.

Mark

Hi Laurencs899

You sound so much better and relaxed after your results and consultation with your doctor.  She does sound lovely and reassuring.about your platelet count and very thorough by organising different blood checks.   

Let us know how you progress after your appointment in December.

All the best

Maureen x

Hi, I have recently been diagnosed with ET with the CALR mutation. I am awaiting results of a BM biopsy to finally confirm, which I had last week and if im being totally honest I am not coping very well. I feel like my life has been turned upside down, I was a fit and healthy 44 year old untill this year. I have read most of the posts on this thread and it has made me feel better but I am struggling with some 'symptoms' that I don't know if its anxiety or ET - I am not sleeping too good and seem to wake early (4 am) most mornings to the feeling of my heartbeat in my ears and chest! its really loud and pretty much impossible to go back to sleep with. I've been told that this is all anxiety related but I am not convinced, has anyone experienced anything similar? 

Thanks,

Nick

Hi Nick

Im nearly 43 & was diagnosed with ET cal-r just before my 40th after a routine blood test for something unrelated. To say it was a shock was an understatement! Especially when the C-word is mentioned. I prefer to say "blood condition" as my young kids are aware but I don't want them worrying unnecessarily. 
 

I remember feeling so anxious after my diagnosis so I understand how you're feeling. Sleep was interrupted & I was generally on edge between appointments. Luckily I've not had my treatment interrupted throughout Covid & I have a call every 6 weeks. 
 

I hope you find out more from your BM biopsy. I didn't need one thank goodness as the thought of that was additional stress. 
 

I take a bit of comfort in that I am otherwise fit & healthy now the fatigue, tingly fingers & blurred vision has gone. 
 

wishing you well & please reach out if it helps. 
 

Fiona x 

Hello Nick

It is really not surprising that you are experiencing some anxiety.  You knew where you were with your life and suddenly, the unexpected has arisen. I have experienced a heavy heartbeat on occasions, but assumed it was something in my life causing concern, not ET and I was glad that my heart was still beating!   Could you try going to bed a hour or so later? Or have something a bit boring to do at 4am, making a list, cleaning something, listening to music, or making a cuppa and read a book.  Now being a bit cheeky, could a bedtime companion keep you occupied to tire you out again, or perhaps play with the dog?  Then snuggle back again when you feel drowsy.  You obviously 'do' the internet, so look up 'Waking during the night'. 

Although I am getting older and obviously gradually less active, I don't think that having ET affected my life  as such.  It was over 20 years ago when the drugs were being developed and unfortunately, one badly affected my heart, so I needed medication for that as well.  I am living with ET and intend to go on for at least another 10 years - my Mum made 90 and my Gran was 94 so I need to beat them!

Finally, make some plans for next year and your next special anniversary - they will come sooner than you think!!

Maureen