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 canāt 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 doesnāt sound like anyone on here tried anything with diet. I was just interested to see. Iāve 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 wonāt succeed but it will be interesting to me if I can contribute to my own treatment. I wonāt 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 couldnāt synthesise. Since diagnosis I changed my multivitamin to one without iron as my haematologist pointed out that I didnāt want to increase blood production via elevated iron levels. Iām sure youāre 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.
Iād be fascinated to read the literature that led you to experiment with your diet. Iād also be wary of basing changes to your diet on one blood test result. Forgive me if I read it wrong. Iāve found my CBC results vary each time and donāt follow neatly behind what Iāve 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. Iād say, from learning from other survivors here and my own experiences, weāre all unique and respond to treatments in different ways and so thereās no exact science to what will definitely help. Frustrating, right?!
Iād 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, itās a depressant, and it disrupts sleep ā 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 donāt 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).
Iād 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 donāt necessarily look into the scientific efficacy.
Hereās 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. Iāll 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. Iām totally thrilled and mean to continue (apart from holiday and g&tās a plenty). Itās only a start but itās got to be good! Iām also starting to meditate when I canāt sleep to heal my blood from my mindā¦ a complete aside I realise! But I just watched āhealā on prime and was fascinated by the power of the mind and healing. Wishing you the bestā¦
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 donāt take the other meds. But Iām not a fruit cake. I have the jak2 gene which is unpredictable so maybe one day if I have issues Iāll take the meds. For now. All okay. But Iām me. I wouldnāt 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 canāt 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, donāt 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. Iām not a martyr to the cause. Iāll soon take something if it shoots really high. Thanks again xx
Definitely not a silly question. Iām doing this now and will have my blood drawn in a month so iāll report back. I am not diagnosed with Essential thrombocythemia (Essential thrombocythemia (ET)) (no gene mutations) but have had platelets in the high 400ās since my early 20ās, and Iām now 58. I had a couple of other things crop up last year in my blood work last year, the most alarming of which was an A1C of 5.9, for the first time. Iāve spent the last year really working on getting that down and expect Iāve knocked it out of prediabetic range. Along with this, iāve been on a diet and nutrition journey that has me doing time restricted eating (that iāll do now for life) and wondering if i have some gluten sensitivity. The way i feel eating anything with gluten in it is very noticably different, something Iām aware of now that I have really dialed in my already good diet. Soā¦ if any of these improvements help lower my platelets, iāll share here. My last reading was 536, higher than my previous high of 480. My working assumption is that inflammation from pre-diabetes may have caused it to increase, but we shall see.
Update. Iāve lowered my A1C to 5.3 and all other results are bang on. Platelets this year are 505. My plan now is to lose weight, something I set aside in favor of first understanding how my body was responding to carbs. My working assumption is that insulin resistance, which leads to inflammation and many other issues, caused my platelets to go into the 500ās. My hope is that weight loss will reverse the insulin resistance and lower my platelets. Iāll report back.
Hi, I am 73, diagnosed with Essential thrombocythemia ('ET') Jak 2, 3 years ago with Platelets in the 500K range. I currently take a baby asperin and alot of neutraceuticals including Beats, Turmeric, Multi Vitamin, zink, Magnesium, Coq10, Natokinase-Serrapeptase, vitamin D3. I also take about 5 oz of quinine daily. I am physically active and exercise regularly. Contrary to my doctors recomendations, I do not take chemo. I have tinnitus (have had it for several years) and have mostly mild skin itching in the winter (use a wood stove in the family room that drys out the air) that I manage with skin moisturizers. My platelets have been stable in the 700K range for the last 2 years. I have no idea if my suppliment regimine affects my platelet count or if it simply is the normal course of the disease for me. I am not an idiot and consider taking chemo if platelet counts rise. I donāt like the fact that all the chemo drugs reduce red blood cell counts as well as platelets. Reduced red blood cells would imply less energy and reduced athletic performance. I live my life as if I didnāt have a blood cancer. I am from Massachusetts USA.
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Hello there @bplunn, welcome to the forum, fellow survivor of Myeloproliferative neoplasms ('MPN'). I see we were both diagnosed around 3 years ago, although I live with Polycythaemia vera ('PV') rather than Essential thrombocythemia ('ET').
Perhaps youād like to read the great Blood Cancer UK information on Essential thrombocythemia ('ET') where youāll find details about symptoms and typical treatments: Essential thrombocythaemia | Blood Cancer UK
Hereās a thread full of lovely folks living with Essential thrombocythemia ('ET') that may be of interest to see how others are getting on: ET diagnosis finally sinking in
If youād prefer to read more localised information from Blood Cancer United, the American equivalent to BCUK, here is their website where youāll find links to a similar forum and information more closely aligned to US healthcare as itās pretty different in some ways to NHS healthcare in the UK: https://bloodcancerunited.org
I hadnāt heard of the term āneutraceuticalsā and it sounds like it typically relates to marketing in the US for what Brits might call complementary healthcare. We forum members canāt recommend treatments, complementary or otherwise, as thatās for our specialists to help us decide, but Iād say itās great that youāre so active. Keeping active is shown and recommended by specialists to really help us offset the fatigue that is so common with Myeloproliferative neoplasms ('MPN') and other cancers.
I would say that itās always wise to pass any change in diet or supplements by our haematologists. I speak from experience as I used to take a multivitamin that actually worsened my Polycythaemia vera ('PV') symptoms due to its iron content. It probably prolonged my need for phlebotomy and maybe even put me at higher risk of clotting, which Iām sure you know is our main risk with Myeloproliferative neoplasms ('MPN').
I wonder what your specialists say about taking those supplements, theyād likely want to know so they can adjust your treatments to help bring down those high platelets. For what itās worth, Iām also in the US (in California) and take daily hydroxyurea and aspirin which have brought my blood cell numbers down into their normal ranges. Personally, the benefits for me of taking hydroxyurea and living into old age far outweigh its potential risks. I wonder why you donāt mind taking aspirin but not hydroxyurea, maybe something to consider.
Anyway, hope that helps you find what you need on the forum @bplunn, glad you found us!
Hi, Thanks for all the info. I participate in a couple of forums in the US but am always looking for new insights.
Wish you well in your journey.
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