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Essential Thrombocytosis symptoms

Posted by lynn22 @lynn22, Apr 5, 2023

Having had high platelets since 2017 and doctors could not find a cause I paid to see a haematologist and I was diagnosed with ET in 2019. With a platelet level of 723 I was put on baby Asprin but unfortunately it did not suit me. I was then put on Clopidogrel but had an allergic reaction to it. I have refused to have a biopsy so far but said I will if levels go over 800. The haematologist made it quite clear that I am at a high risk of having a stroke. So I am taking Arnica homeopathy twice a day to thin the blood which helps the headaches which I have suffered with for years and take 2 paracetamol a day, usually when I wake-up as that’s when I get most headaches and sometimes it is like having a massive hangover. I also get tired and lightheaded and since January I am suffering with constant tingling hands and feet which according to the internet is another side affect. But as of two weeks ago I have tingling lips and tongue which is not listed as a side affect and I am wondering if anyone else also has these symptoms tingling symptoms. Having tried to see a doctor the surgery have said I can have a routine appointment which is weeks away. My doctor has agreed that I have a blood test every 3 months to monitor, at the moment it ranges from 750 to 800. Any advice gratefully received.

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janemc | @janemc | 1 day ago
In reply to @kapow "It gives me hope that maybe my platelets will settle down! I too am MPL driver,..." + (show)
@kapow

It gives me hope that maybe my platelets will settle down! I too am MPL driver, and have had my dosage of Hydroxyurea altered frequently, since my platelets are not responding so well. Right now I am still over 600, so my dosage was increased to 500*2 5 days a week and 500 on the weekend. Last time that the dosage was this high my white blood cells dropped so much that they had to reduce my dosage. Prior to this latest increase I had been 500*2 on the weekend and 500 mg the other 5
days. And prior to that it was 500 mg 7 days a week. (That was after my white blood cells dropped) Seems to be a real balancing act ….i hope we get it right soon.

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Our MPL driver is a stubborn old coot!

You are so right, it seems to take forever to find the dose that's not too high, not too low . . . . hang in there!

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1pearl | @1pearl | 16 hours ago
In reply to @1pearl "Hi and thanks for responding. I have only had platelets checked for less than one month...." + (show)
@1pearl

Hi and thanks for responding. I have only had platelets checked for less than one month. On there own they went down 25%. I do not have prior data to compare with offing enough.

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I am JAG2 negative, CALR type 1 mutation positive found now, and I believe MPL negative.

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1 reply
nohrt4me | @nohrt4me | 7 hours ago
In reply to @1pearl "I am JAG2 negative, CALR type 1 mutation positive found now, and I believe MPL negative." + (show)
@1pearl

I am JAG2 negative, CALR type 1 mutation positive found now, and I believe MPL negative.

Jump to this post

Welcome to the CALR club. Me, too. Good news with CALR is that we don't have as many clotting incidents as people with JAK2. CALR patients also cannot progress to polycythemia vera.

But less is known about this mutation and how it affects overall health and longevity.

Hoping you can get some answers about the enlarged joints. Glad that is not painful for you.

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1pearl | @1pearl | 6 hours ago

Hi nohrt4me,

Thanks for posting. Yes, there are concerns still with only CALR mutation too I know. The data all seems so new to make predictions about it. I am still concerned about PMF and how O/H listed 15 year cumulative risk of transforming to acute leukemia (2%) or myelofibrosis(4%).
Would a bone marrow biopsy at this time be of help or give more information is my question?

I did ask her about alleles and she printed me my six page molecular genetics report. There were two other alterations listed that I have never heard of under title of “variant interpretation summary for pathogenic bio markers”. I see the CALR -p.L367Tfs*46 on it and two others.

There is still much to try to learn!

Have a blessed day!

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