Is there anyway I can lower my platelet count? - MPN Voice

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Is there anyway I can lower my platelet count?

livelovelaugh1992 profile image

Is there anyway I can lower my platelet count? Anything I should eat or do?

Last month JAK2 mutation was detected after a test and my Hematologist says I can just take aspirin daily for now but if it goes up to 2000+ I need to take Hydroxyurea, My platelet was

November 2020 - 800+

December 2020 - 700+

January 2021 - Spike to 1000

February 2021 - 1300+

No April - became 1500+

I tried to keep healthy at least but not like too healthy just more grains and vegetables in my diet and more water and exercise.

Doctor said I can't do anything it's just how the Jak2 Gene goes, for now I need to go back once every month to keep my platelet monitored. It just suck that "I can't do anything" about it.

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livelovelaugh1992
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19 Replies
harleydavidson profile image
harleydavidson

Hi livelovelaugh. A few years ago I managed to reduce mine by eating fish 5 days a week and drinking a pint of pomegranate juice a day, loads of water and healthy eating and exercise, it took a month to bring my platelets to a normal range. I may have just been lucky but it did work for me. Good luck. Mel x

livelovelaugh1992 profile image
livelovelaugh1992 in reply toharleydavidson

Thank you very much! I will keep that in mind, there's no harm in trying, I guess?

Magentas profile image
Magentas in reply tolivelovelaugh1992

I’d be wary of ingesting all those heavy metals, micro plastics and radiation via fish consumption.

MarPapa profile image
MarPapa in reply tolivelovelaugh1992

I am very sorry for the situation you are in. I found myself at this point that I did not know what to do. The only sure thing is that Hydroxyurea helps a lot in the fall of platelets. Have you had done a bone marrow biopsy? If you not, discuss it with your hematologist. Maintain a healthy lifestyle and think positive. The side effects of Hydroxyurea to me are minimal at the moment. I wish you the best.

Mostew profile image
Mostew

An anti inflammatory diet is recommended . Look up Mediterranean diet. Also things like Qi gong / yoga are good for helping the body stay in balance . (And mind)

.

I’ve tried all sorts resulting in me feeling strong emotionally and generally well .

BUT platelets still900/950 . Steady for a year .

Pte82 profile image
Pte82 in reply toMostew

Mostew, that happened with my wife...steady 950+ platelets while on Anagrelide after leaving HU. With her oncologists approval she began using 50mg of red palm tocotrienol twice a day with meals. As the platelets went down her meds were adjusted. Only if under the supervision and approval of a health care professional should use of a non-prescribed product be used.

Mostew profile image
Mostew

Ps whatever happens you can always keep trying to stay ‘as well as possible for you’ WHATEVER.

Good luck

Peterwi profile image
Peterwi

I’m on an anti inflammatory diet for another health reason. But to my great surprise it also stopped itching, headache and I think I’m less tired, my platelets stayed unfortunately the same.

LaurieDuitch profile image
LaurieDuitch

I am just a case of one person, however following a plant based diet low in processed sugars seem to help me keep my platelets stable, so far anyways. Since I believe it is important not to feel deprived, I do use date and maple syrup as sweeteners.

GinnyWolf profile image
GinnyWolf in reply toLaurieDuitch

Hi, I'm also on a plant based diet and trying to cut down on processed food and oil. My platelets are stable at around 750. Do you take B12?

Snagglepus profile image
Snagglepus

My haematologist recommended I eat a clove of garlic or ginger daily. I’ve started to make ginger shots which I take daily. I add some lemon and honey to them. Next appointment is in May so will see if it helps.

in reply toSnagglepus

I found a great way to eat raw garlic and ginger (and plan on adding raw turmeric).

- peel the garlic, slice the ginger, put them into a jar and then pour (raw) honey over. Very quickly the honey will become water runny but it takes a while to penetrate those cloves. Little ones it does so quickly, but the bigger ones take longer. I found I had to wait weveral months (but they actually store for years). They are DELICIOUS and still raw, no garlic breath or body odour.Son is now doing this - only he decided to go for the pre-peeled garlic. I am not so sure tho, as this may have been pasteurised or irradiated. I was happy to sit in front of TV and peel it myself.

Magentas profile image
Magentas

Get a Bone Marrow Biopsy ASAP for starters. You need a bunch of tests....it”s not that simple.

nightshadow profile image
nightshadow

It would seem to me that unless you have changed your diet over the course of the record that you posted, diet is not the cause of your platelet rise, and therefore changing your diet is probably not going to improve the numbers in the long run.

But whether diet can affect platelet levels when you have the JAK2 mutation is less important than that diet can affect a whole host of other health issues that ET can make more problematic. Eat the best diet you can stand without becoming stressed out about it. I say that because too much stress is not helpful to your health overall either.

Going with more grains and vegetables (and I would add raw fruit to that) as well as exercise is going to put you in better health so that if ET throws something nasty your way you'll be in a better position to ride through it.

Going vegetarian (assuming you don't over simply replace your meat dish with a cheese dish) or vegan a few days out of the week is a good thing to do for general overall health.

in reply tonightshadow

grains did really bad things to me - until I learned to soak them to remove their phytic acids (same as with nuts)

hunter5582 profile image
hunter5582

Assuming you are not talking about initiating cytoreduction, which would be a conversation about HU, PEG-IFN, RUX, etc. The short answer is to do what you can to control systemic inflammation. It will not mane the thrombocytosis disappear, but it can help to control it to some degree. No miracle cures, just gives the best chances possible. Also really helps with the secondary symptoms. A combination of diet and supplements can help; however you need to be careful. You are at significantly increased risk for hemorrhage with platelet levels that high. If it has not already been done recently, you need to be rechecked with a von Willebrand Panel and prothrombin times. This is VERY important to do before considering any anti-inflammatory regimen.

Hope you get answers soon.

Lifam profile image
Lifam

A good anti-inflammatory diet like the Mediterranean diet helps. I follow the principal of Mediterranean diet except I also cut down intake of sodium, sugar and carbohydrate, watch the saturated fat, keep active, keep cholesterol and weight down, and I am on HU, I found all that helps.

cmc_ufl profile image
cmc_ufl

Just out of curiosity, do you know what your platelet history was prior to November 2020? Am wondering if you have past record of platelets in the normal range and how quickly it look for them to rise to 800.

livelovelaugh1992 profile image
livelovelaugh1992 in reply tocmc_ufl

I have no idea actually I may have high platelets before even I just don’t have it check, even getting Cbc for the November 2020 is just because I wanna take a day off from work then it just gone to taking one test to another. I may have Jak2 gene even before I just don’t have symptoms that are affecting my life. The first time I got that result I was told because it was maybe because of Iron deficiency, I took supplements for that then the platelets was still high.

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