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Essential thrombocythemia

13 Mar 2019 21:57 in response to NM9309

Hi NM9309

I took Anagrelide from 1998, as I agreed to be on a trial for it.  Unfortunately, in 2000, I gradually became short of breath with swollen feet etc, as I had developed a heart condition and the anagrelide was immediately stopped. Apparently, as a result of the trial, another patient in America also suffered heart damage - my heart was enlarged and the valve did not close properly in the ventricle, allowing blood to bypass it.  Three months later I started on hydroxycarbamide with no apparent subsequent side effects and within 2 years, tests showed that my heart had reverted to the 'low end of normal'.  Investigating further, I discovered that those on Anagrelide were recomended to be given heart checks before they started and regular checks while taking it.  Hopefully, my experience, which was reported, has helped others to take Anagrelide without adverse effects.

Essential thrombocythemia

17 Mar 2019 18:37 in response to MaureenV

Hi I’m 46 and have just been told I may have Essential Thrombocythaemia after an MRI on my head & repeat blood tests my platelets are over 800 and not coming down.   I’ve got to have a bone marrow sample taken on 25.3.19 has anyone else had this done?   It’s all a bit of a shock so I’m glad this website exists to help understand what others are going through with the condition.   

Essential thrombocythemia

17 Mar 2019 18:54 in response to Fizzytodd

Yes I needed bone marrow sample taken, while I was being assessed at the Haematology clinic.  I had to lay on my stomach and a local anaesthetic was injected into my back, on my backbone just above my waist..  Then a nurse stood by me and the doctor took a sample.  I cannot say it didn't hurt, but it was bearable and only lasted a minute or two - a bit like a bad toothache in a different place.  From this sample they can confirm it is ET.  My platelets were up to 800 when they started treating me and if you ignore my earlier post about the initial problem I had, subsequently I have been fine.  One tablet once a day for the last nearly 20 years (and until I fall off my perch).  I am living life normally and have no ill effects.  I visit the Haematologist once every 4 months to have a blood test - check all is well - and collect the prescription for the next four months.  I am actually very glad they found out that I had ET as some people have it without knowing, which could make them liable to strokes and heart attacks, because their blood clots too much.  Have courage and I wish you well.

 

Essential thrombocythemia

17 Mar 2019 19:08 in response to MaureenV

Thank you so much for your reply it’s very positive to know I will be able to carry on leading a normal life as I have a very active job which I love.   Best wishes 

Essential thrombocythemia

17 Mar 2019 19:31 in response to Fizzytodd

Positive thinking helps us all through life.  I do hope that my expereince is repeated for you and that your treatment and care will be as successful as mine.  All the best.

Essential thrombocythemia

17 Mar 2019 19:47 in response to MaureenV

Thank you very much Happy

Essential thrombocythemia

25 Apr 2019 17:52 in response to Fizzytodd

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.

Essential thrombocythemia

25 Apr 2019 18:02 in response to Mcr89

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 

Essential thrombocythemia

25 Apr 2019 18:14 in response to NM9309

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 

Essential thrombocythemia

25 Apr 2019 18:17 in response to Mcr89

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.

 

Essential thrombocythemia

25 Apr 2019 18:53 in response to MaureenV

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!

Essential thrombocythemia

25 Apr 2019 19:32 in response to Mcr89

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.

Essential thrombocythemia

26 Apr 2019 07:04 in response to MaureenV

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.

Essential thrombocythemia

26 Apr 2019 21:25 in response to Roma

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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