Has anybody on here with ET experimented with food to inhibit platelets? Or is that a silly question?

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Has anybody on here with Essential thrombocythemia (ET) experimented with food to lower platelets? Or is that a silly question?

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Hi @Navo there is never a silly question on our forum.
Others may have opinions, but I would suggest that you discuss this with your medical team, a specialist nurse is often a good point of contact.
Very personally, not a medical opinion, I would say not to alter your diet whilst under a medical team as they need to know what is altering medical test results so they can consider medical options.
Look after yourself and please do keep posting

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Hello there @Navo
As @Erica said, there are no silly questions on here and thank you for posting. May I ask whether you have already read any research around this? Are you on treatment at this point for your Essential thrombocythemia (ET)?
To my knowledge there are suggestions that some foods can potentially increase the platelet count but the extent of this increase is not stated. When looking into reducing the platelet count I did not get very far and any papers were 10 years ago with no real outcome of how much the count would reduce by. I would not encourage any radical changes in diet unless discussed with your treatment team and particularly if you are taking medications for your Essential thrombocythemia (ET).
So sorry I can’t be of more help and do speak to your team for any guidance they may have.
Kind regards
Gemma

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Thanks very much. It doesn’t sound like anyone on here tried anything with diet. I was just interested to see. I’ve got no intention of taking over my own treatment. But being new to Essential thrombocythemia (ET) I experimented in a limited way. Tried vitamin D before a blood count. The count did drop from previous. Tonic water lowers platelets as does alcohol. So looks like gin and tonics all around. Funny enough bitter lemon also lowers platelets. The hospital know I experiment. But think it wont be enough since the jac2 gene is faulty so unpredictable. But I have delayed treatment 4 weeks to see if/how/whether I make any headway with my limited attempt. Dark chocolate is another platelet reducer. No doubt I won’t succeed but it will be interesting to me if I can contribute to my own treatment. I won’t know if I go directly on the treatment.
Thanks again
Regards

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Hi @Navo, I just follow a meat or fish and probably 3 veg diet during the week. At the weekend we add a piece of cake, a desert and 4 chocolates as our treats.
I do ensure I drink plenty of water too.
Please do let us know what you and your medical team discuss and decide the way forward for you.
Look after yourself

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Hey there @Navo, sorry to read of your diagnosis with Essential thrombocythemia (ET). Last year I was diagnosed with a closely related Myeloproliferative neoplasms (MPN), Polycythaemia vera (PV), so I understand and empathise with your desire to find ways you can benefit your health.

Prior to diagnosis I was vegan and active and took multivitamins to make up for the vitamin B12 my diet couldn’t synthesise. Since diagnosis I changed my multivitamin to one without iron as my haematologist pointed out that I didn’t want to increase blood production via elevated iron levels. I’m sure you’re aware MPNs are all about proliferation of our various blood cells, not only platelets. My platelets and white blood cells were both elevated at diagnosis and now after treatment they are usually in the normal range when tested.

I’d be fascinated to read the literature that led you to experiment with your diet. I’d also be wary of basing changes to your diet on one blood test result. Forgive me if I read it wrong. I’ve found my CBC results vary each time and don’t follow neatly behind what I’ve digested. Stress, dehydration, and many other aspects of living with an Myeloproliferative neoplasms (MPN) affect our bodily responses and thus how much blood is (over)produced. I’d say, from learning from other survivors here and my own experiences, we’re all unique and respond to treatments in different ways and so there’s no exact science to what will definitely help. Frustrating, right?!

I’d be remiss for not pointing out that alcohol is a carcinogen and some of our Myeloproliferative neoplasms (MPN) treatments suggest we reduce or cut out alcohol altogether. It can dehydrate us, it’s a depressant, and it disrupts sleep — all of which negatively affect us worse when living with MPNs.

What treatment has been suggested for you, out of interest? No worries if you don’t want to share. I take daily hydroxyurea, daily aspirin, and phlebotomy as needed (depending on my haematocrit level when a CBC is done each month).

I’d say, based on my experience of looking for scientific articles relating to MPNs and what may help living with them, there is a lot of pseudoscientific nonsense out there masquerading as blood cancer science. Some of it is shared by pharmaceutical companies with vested interest in their sales, some by doctors who really should know better. Be wary about what you read and where from and what you might share here as there are many folks who will take blood cancer advice on face value and don’t necessarily look into the scientific efficacy.

Here’s the thoroughly researched Blood Cancer UK information about food, should you be interested. Hope you find answers to your questions, @Navo. Interesting topic!

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Thanks all. I agree with all you say. Thanks for the link. I’ll look with interest.
Much appreciated

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