Hi Nick,

Although i have not been diagnosed with ET ( still going through the tests) i too felt so anxious and i honestly cried for the first week of being told it might be ET. I googled everything not sure there was anything else left for me to find! I would look at my children and cry from being really worried. Coming onto this forum made me feel so much better, and reassured me that if i do have ET it is is managed well it shouldnt affect my life too much. 
I too rang the doctors a couple of months ago as i could hear my heartbeat and they also said it was anxiety. I have read it can happen if your iron is low, which my latest blood test did show. Did you have the blood test for the calr one after the jak2 one, my jak2 was negative so they have tested me for the calr one. Do you mind me asking what your platelet level is?

i really hope finding people on here who can relate to how worrying it initially is will help you! If you are really worried about the heart beat dont be afraid to push for more tests too. I have lots of symptoms that i do have to put down to anxiety now but some days it is more of a challenge for myself to believe it is the anxiety.

X

Hi, thanks for all the kind replies, finding this forum has really helped me understand and accept my diagnosis. I shall take onboard the suggestion s for when I wake at 4am. I am currently on just aspirin and  a  'watch and wait' plan.  My platelets were just under 1000 the last time they were checked. I had two blood tests to determine which mutation I had. I have a doctor's appointment soon, so I will mention the heartbeat and sleeping etc ... Thanks again

Nick 

Hi Nick

Glad we have all helped.  You don't have to do all the 4am activities one after the other in one night though!!

Let us know how you get on with the test results and any change in medication.  The doctors are there to answer your questions and to keep you as healthy as possible.

All the best

Maureen

Good Evening Nick.

I was diagnosed with Essential Thrombocythemia Calr last year, during a routine blood test before under going a brain tumour surgery. I am 45 and male.

Unfortunately anxiety got the better of me, and caused numerous conditions.  Which at the time were hard to determine if caused by ET or anxiety. As the symptoms are also so alike.

I had a bmb in March this year, which confirmed ET Calr as well as ultrasound to spleen.

All i would say is try not to worry, you are being monitored and that's better than not knowing you have this condition.

I am on hydroxycarbamide as my platelets reached 1665 back in February this year. I suffer a tad with fatigue, but just tired around late afternoon.

This forum has been a great help over the past year, especially with help from Maureen who have lived with this condition for over 20 years.

I have a meeting tomorrow with my haematologist specialist, I am hoping all is going well with my medication and all blood counts are ok.

I also find "healthunlocked" is a great forum to be part of with MPN VOICE a great help with any questions.

Keep positive 

Mark

Hi Mark, thanks for the reply. It sounds like you have had a really difficult time over the last couple of years. It really puts things into perspective when life throws us these challenges. I will look into the health unlocked website and will work on conquering my anxiety. Hope everything went ok with your check up appointment.

Nick

Hi Nick,

My apologies for a late response, but my check up was good.

Platelets at 442, all other blood counts are good.

I do have a phone consultation next week with the Hospital.

I do hope your anxiety levels are reducing? Hope you looked into healthunlocked and MPNVoice website.

All the best

Mark

Good Morning Maureen 

Lovely to hear from you!

I'm still plodding along thank you. Many congratulations on your birthday, 21 again? I was 21 again on the 6th November, another year flown by. Before you know it, and seeing you mentioned it- Christmas!!  

Merry Christmas too you.

You have a holiday planned already, I still haven't started Christmas shopping. But we are going to get the decorations down today, and possibly start getting them out. Bit early I know, but we have things on over next few weekends. 

Will catch up soon, hope you and your husband are well.

Mark

I had a blood test after weakness, pain, burning sensation and numbness in my hands and feet, joint pain, fatigue and brain fog, my GP thought I may have rheumatoid but my bloods came back ok other than my Platelets that were high over 1500. I have just had a telephone consultation and the consultant has said in young people they don't worry about it they just advise aspirin. I am a Health visitor but an adult nurse by background and I am worried that I am already struggling at work because of how I am feeling that my symptoms don't get worse as I feel that they have fluctuated over the last 2 months which is why I went to the GPs. My next appointment is in 6 weeks. 

Hello Joey87

I know that, as a health visitor (and in nursing), you now have to keep plentiful records on how a patient is.   I am sure you know that a very busy or sad day, a less than good nights sleep, a concern unresolved can all affect how our body reacts to the pressures of living, but 'we know' we can manage it all.  Be kind to yourself - have you 'got' to go there or 'do' that thing.  I think our body tells us to slow down sometimes.  When my daughter has been very busy, at times she has been stopped by vertigo, lasting a few days and forcing her to take to her bed..

I suspect you have a lot to think about in your work, but I hope you keep a brief record of how you feel.yourself.   You have a checkup appointment in 6 weeks, but if a particular concern is getting worse and making it difficult for you to work, then get in touch with the medics sooner.   I am of course aware of the needs of the NHS at the moment, but you matter too.  

I hope you have enough time off this coming weekend, so that you can enjoy a rest and Christmas.

Maureen