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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Hey Navo
As someone also with Essential thrombocythemia (ET) I was just researching alternative ways to lower platelet counts and stumbled on your post. I have recently started the human being diet which is basically cutting out sugar for a a month (easier than it sounds!) while following a protein and veg diet and after that first month having a treat meal every week. In November my blood count was over 800, for the first time since being diagnosed 8 years ago in pregnancy my platelet count has dropped to 760 at the end of January a month after starting this healthy eating plan. I’m totally thrilled and mean to continue (apart from holiday and g&t’s a plenty). It’s only a start but it’s got to be good! I’m also starting to meditate when I can’t sleep to heal my blood from my mind… a complete aside I realise! But I just watched ‘heal’ on prime and was fascinated by the power of the mind and healing. Wishing you the best…
Hi @Zosnow welcome to our forum.
I am glad that you have found a regime that works for you, but perhaps, as we advise everyone, do check it out with your specialist nurse, medical team and/or a haematology nutritionist to make sure they know what you are doing and you are getting the balance your body needs with your medical history
Please do let us know how you are getting on and I really look forward to hearing more about you.
Take lots of special care of yourself
Yes thank you. I have been experimenting with pterostilbene which is the goodness from blueberries, cod liver oil, vitamin D, tumeric, walnuts, cranberries and numerous other foods I googled that lower platelets. I also take low dose aspirin. The platelets went from low 600s to 540 after one month. I don’t take the other meds. But I’m not a fruit cake. I have the jak2 gene which is unpredictable so maybe one day if I have issues I’ll take the meds. For now. All okay. But I’m me. I wouldn’t tell anyone else to live like that xx
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Good to hear from you again @Navo and I certainly do not think of you as a fruit cake, you are a valued member of our forum.
Everyone has the right to decide what is best for them, which is the great difference in the medical system since they have changed the system to patient focused and choice.
Really look after yourself and please do let us know how you get on.
Hi Navo, I was so interested to read about your diet experiments. Ever since my Myelodysplastic syndrome (MDS)/Myeloproliferative neoplasms (MPN) Overlap diagnosis, I have had high platelets - up to 1000 at times. This has resulted in high potassium levels in my blood tests. Consequently, my food choices have been dictated by potassium levels as numerous out of hours doctors see the results and send me off to A&E for checks although my haematology team are not concerned. I have been on hydroxy for 4 years.
My platelets are now 540. I too, take vitamin D, low dose aspirin and drink tonic water ( minus the gin!) and eat blueberries and raspberries daily, so our diets are similar I think that I will try turmeric. It is good, trying to help oneself. Although I can’t do without the hydroxy, as my platelets shoot up if the dose is lower, they stay lower than they used to be when I ate anything.. I hope that your platelets keep their downward trend, but If you do need hydroxycarbamide, don’t worry about taking it.
Keep in touch please. Best wishes, Kate S
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Thanks very much. Been okay so far fluctuate between 5 and 600. I’m not a martyr to the cause. I’ll soon take something if it shoots really high. Thanks again xx