I have recently been diagnosed with ET and I'm finding it very difficult to deal with mentally and physically.  I am extremely lethargic and cannot imagine dealing with high pressure, which is the case in my line of work, and have been signed off until the end of April, however I doubt I will be able to get back by the end of April!  I was sleeping upto 15 hours a day until I recently joined the gym which has helped somewhat but still have days where I literally cannot do anything(today being one of them).

Reading through this forum most people seem to have underlying mutations which have been ruled out for me, which I guess is a good thing but I dont understand why this is happening to me.  My Platelet count is sitting around 1100 and I beleive it should be max 450, so I have been told to take aspirin daily.  Does anyone know if this should be making me feel better? 

I'm also suffering from a constant dull headache and sometimes wake up feeling dizzy in the morning.  Is this normal with ET and if so what can I do to try and alleviate these symptoms?

I'm only 47 and have been pretty healthy all my life so this is come as a bit of a shock for me.

Hope to get some advice from this forum and the experience of the people on here.

Hi and welcome to the club!

The aspirin itself doesn't bring the count down instead it controls the blood flow to ensure it doesn't become sticky and septicle to clots. The treatments like injections or tablet form taking orally advised by your heamo clinic will bring your count lower. They ideally like around 400 but everyone is unique as I find 500 is my balanced count maintaining my work and family life balance.

The morning symptoms will reduce once your count reaches normal levels, also try not to take cocodamol for headaches as these have side effects similar to the symptoms. 

I personally found out when I was 31 with my youngest child at one years and was scared it was a life sentence. Thankfully with treatment and reduced blood counts at 40 I have a relatively normal life. 

Good luck with your treatment and hope your symptoms subside 

Hi and thanks for the quick reply.  

I have been told that as my platelet count is below 1500 I won't be having treatment other than the aspirin.  I will only have additional treatment if the count increases to over 1500.  Apparently the recommended treatment can cause more serious conditions and they are not prepared to go down this route at this stage.  

Do you know if there is any dietary route I could go down or am I stabbing in the dark with this train of thought?

Thank you 

I cannot tell from your post whether you have been referred to the Haematology Clinic at Hospital.  When I was first diagnosed over 20 years ago, they needed to do a Lumbar puncture to check the platelet count in my spine.  Not comfortable as such, but reassuring when they confirmed diagnosis and put me on treatment.  I also discovered that a lot of people have the condition, but it is never found, as they do not exhibit symptoms that anything is wrong.  So also reassuring being diagnosed because less likely to have a stroke or heart attack, because of blood clotting too quickly.  When you see a spcialist, ask questions, so that you completely understand how they are managing your ET.  Another tip - keep a diary of how you feel and note any changes in medication and any subsequent changes in how you feel,. It might take a little time, but you will feel better soon.

My count was reaching 900ish when I was diagnosed and I now take a low dose of Hydroxycarbamide which keeps my count to between 3 and 400.  I did originally take another chemo which caused me heart problems, as described in an earlier post.  I am now 81, obviously less active than in my 20s, but expect to live to about 100, as my mother and grandmother were both over 90 before they left us.

Hi MaureenV

Apologies a timeline may also help with any advice you could give.

October 2018 health check as I changed GP surgery. This picked up high platelet count. At which point I was referred to Heamatology for further tests.  

3 months of test followed and platelet count went as high as 1400.  Also had an ultrasound in early February and also Bone Marrow Biopsy on 26th Feb.  Started taking Aspirin on 27th February.

18th March results given by consultant which resulted in Essential Thrombocythemia being diagnosed with no mutations.

I'm just struggling with extreme tiredness, headaches and the obvious anxiety!

I have just looked on the internet to find the correct phrases to pass on.  As I said before, ET is not often diagnosed, in fact it is a rare chronic (continuing for a long time) disease, only diagnosed in an estimated 3 per 100,000 population.  I was told that having ET will not kill me - it would be the high platelet count which could cause other problems to happen. 'It' says the drug I take suppresses bone marrow production of blood cells, including platelets. but my red  and white cell count is fine.  The internet also indicates that a high count does produce symptoms of headaches, feeling weak and tired and there can be tingling felt in hands or feet.

Fortuitous that you changed doctor and he/she sounds good, in that they found you had a problem that needed dealing with.  I am wondering whether your Consultant is waiting to see if your count comes down by itself.  Presumably you have a follow up appointment.  If not, I would suggest you ask your doctor to refer you again - even to a different Consultant.

Let me/us know how you get on.

Thanks once again Maureen.

Yes very lucky I changed GP.

I did pay to have a second opinion privately and everything the NHS diagnosed was confirmed, although it was explained in more detail to me by the private consultant.

I am having regular blood tests and am due back to see the consultant too, maybe they are reviewing the results to ascertain whether further treatment will take place. 

Thanks once again.

Hi, have just found this forum , and wanted to share my feelings on here if that's ok , I was diagnosed about 13 years ago . I kept getting infections and was extremely tired,  i too take hydroxycarbomide 1000 mg a day along with aspirin and allopurinol to combat gout !i go see my haematologist every 3 moths and at the moment feel and look really well, I do have "blips" but I am a very positive person and believe this helps a lot , so when people say I look well , I smile and take it , I would hate anyone saying they had seen me and say I look ill!! I am vain ha ha .

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  Hi all i was diagnosed with Essential Thrombocythemia 13 years ago at the age of 28, felt drained all the time and had problems with circulation which appeared like Raynauds Syndrome. Went to the doctor who ran blood tests and my platelet count was over 1600, bone marrow biopsy and bloods found no mutation at the time and have recently also been checked for new mutation, I am one of those rarities with no mutation.

Been taking hydroxycarbmide 1500mg daily with aspirin since diagnosed and platelets stay roughly around 400. The only real side affect i noticed to the chemo was that my hair thinned and has never really recovered and if there is an illness going around it's a matter of when i get it not if -  but considering what the other side affects could be i see myself lucky really!

I had 11 really good years where the condition didnt really affect my life, however in 2017 i tore a leg muscle and my leg was placed in a boot - 7 days later i suffered a massive PE - a clot had formed in my leg and travelled up - my advise to anyone who has this condition, even though you may tell medical professionals you have ET most have never heard of it due to its rarity - i informed the nurse at a and e when i received the boot and later doctors informed me that they should have given me additional anti coags to prevent clots. This may have prevented this life threatening condition.

This certainly has made me more aware of the condition. 

Unfortunatley 4 months ago i had a reoccuring PE and am now on rivaroxiban also for life - rattle rattle!. 

At the age of 41 trying to bounce back and recently returned to work after last PE, i remain possitive - life begins at 42 afterall????? and i've only used up a few of my 9 lives!