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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@clickpaw

I am also trying to lower my platelets naterally, the diet above tells you to eat broccoli and leafy greens, but they do not lower platelets it's the opposite. I read that you should not eat gluten or lactose, so i started drinking lactose free milk, it raised my platelets. I amstill working on my diet, I am confused about oranges and grapfriut, can I eat or not.

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Welcome to Connect, @clickpaw. There are diets posted online to potentially lower platelets by reducing inflammation in the body. But understanding the reasons behind elevated platelet counts is essential for determining effective strategies for reduction.
Are you working with a hematologist to find out the underlying cause for your elevated platelets? Have you had any genetic testing done to check for acquired mutations in genes such as CALR or JAK2 which can cause Essential Thrombocythemia (ET)?

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