essential thrombocythaemia (ET)

I was called for a shingles vaccination at my surgery, last week 28th February. I’m 52 and thought it was because I am a full time carer for my mother with dementia. When I went in the care worker looked on the screen and said I was having the vaccine, because I had an autoimmune issue, which I responded with “Do I?” She went on to tell me I had ET Essential Thrombocyotis. I asked her to write it down and of course I googled when I got home.

I had been to the Dr in November because I had a very large black bruise on my right bum cheek. I felt something pop in that region and it felt when I sat down that I was actually sitting on something, I did actually check to see it wasn’t one of the dogs toys. When I went to the loo, I discovered the bruise, which was shocking. When I went to the Dr. I also mentioned that I had been feeling a bit unsteady, that my apple watch also kept telling me that my heart was beating too fast quite frequently normally when I was just doing very little. I’m also always tired, but as mentioned I care for my mum full time, she lives with us, so it is exhausting. Anyway blood tests ordered came back with high platelets, but I did have a nasty cold, bloods were redone and not as high, but another test has to be done 3months after last one. The letter said there was nothing to be alarmed about! 

So, anyway after reading on google, I am of course alarmed,  I decided to book an appt with the Dr, filled out the online form, told them what has happened with the conversation with the carer at the vaccination appointment and was told by text that the Dr. had reviewed the request and will contact me on the 12th March! 

So really was looking for some advice, should I be concerned, are the Dr’s being over zealous?  

Thanks in advance 

  • Hello Uplands72 and thanks for the post

    I can appreciate the surprise you had when you were given the information from the nurse about having Essential Thrombocythaemia (ET). 

    Unfortunately without being involved in your care we cannot really tell you much more about your own situation and it is best to wait to speak with your own doctor.

    We can't say why you weren't told about this before or in fact if this is definitely the case for you. Usually anyone who has abnormal blood results will be told and then either for bloods to be repeated ( as in your case) and when necessary referred to a specialist team. In the case of a suspicion of ET a referral to a blood doctor ( haematologist) is usually made. It may be that your doctors are awaiting the 3rd blood test before deciding if further actions need to be taken.

    It sounds like you have already done your own research about ET but there is more about this here. As you will see ET is one type of blood disorders called myeloproliferative neoplasms when the bone marrow produces too many blood cells that grow out of control. These are classified as types of blood cancer but these don't always cause symptoms and may only need very mild treatment and not always straightaway.

    I hope you learn more about what all of this means for you soon. Please get back to us if you need any more information or support.  You may find it helpful to talk things through with one of the nurses on our helpline.  The number to call is Freephone 0808 800 4040 and the lines are open from 9am till 5pm Monday to Friday.

    Best wishes,

    Naomi