Any Success With Natural Treatments for Essential Thrombocythemia?

Posted by lisa1968 @lisa1968, Sep 13, 2023

Hello, I was just diagnosed yesterday with ET and I have the MPL EXON 10 MUTATION. My doctor put me on baby aspirin and hydroxurea. I didn't know that was a chemo drug until I looked it up.
I'm not going go take it, I want to try natural things. Have you tried any natural things? Did it help?

I'm starting on vitamin D3, tonic water with quinine, & Allicin. These are the only things i've read about last night a i'm just beginning my search for info to try and help myself. My platelets are in the low 700's and i'm 55 years old.

Have you heard of any other natural things to lower platelets? That's my goal right now. Thanks for reading.

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@preacherswife1977

It is definitely worth a try. I go back on the 25th without any CBD. If they are elevated more than last time I am definitely going back on CBD. Some Dr's don't like the use of CBD but I am at a point where I have to look out for myself. I have had it checked with and without the CBD and it is lower each time with the CBD, Wishing you the best!

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Can you please share the information you have about CBD lowering platelets?
I take CBD at night to help me sleep but I have not noticed any impact on my platelet counts.
Also I am wondering about using CBD in Europe. I will be traveling for a month with summer but I am unsure if I can take the CBD with me. I fly into and out of London but will be in many countries during this month.

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@sregiani

So right to recommend seeing a functional medicine doc.
Mine wants me on K2 (makes D more effective and is heart protective) and extra B vits to negate damage from air pollution as I’m in an industrial area.
Yes, it's important to read up on what is helpful to control our platelets. We are all individuals and need to work w/someone professional who knows us best.

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Be very careful with K2 - it is also used to increase platelet levels in patients who have low levels!

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@sregiani

So right to recommend seeing a functional medicine doc.
Mine wants me on K2 (makes D more effective and is heart protective) and extra B vits to negate damage from air pollution as I’m in an industrial area.
Yes, it's important to read up on what is helpful to control our platelets. We are all individuals and need to work w/someone professional who knows us best.

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Agreed getting a good Functional Med Dr is key.
But if you have a blood disorder with high platelets my understanding is you shouldn’t be on any K supplements and should also avoid consuming K products…K thickens blood, creates more platelets, creates clots.

The B vitamins primarily B12 are going to raise platelets count.

I have a great Chinese med Dr who’s in process of also becoming a Functional Med Dr and she said same thing to me about Vit K and B but I told her for blood disorders and high platelets we are ppl that this will have negative effects on.

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@lynnevb

Can you please share the information you have about CBD lowering platelets?
I take CBD at night to help me sleep but I have not noticed any impact on my platelet counts.
Also I am wondering about using CBD in Europe. I will be traveling for a month with summer but I am unsure if I can take the CBD with me. I fly into and out of London but will be in many countries during this month.

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A pilot friend told me best to not potentially endanger yourself and to not bring any type of CBD, etc. product.

Just buy some when you get to wherever you’re flying.
And don’t bring it back home or elsewhere on plane with you.

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@healedbytheblood0119

Hi, agreed I’m holistic too and doing my best to not take more than this baby aspirin don’t even want that.

I’ve read cranberry juice, vegan diet, fish oil 1200mg, garlic oil 1000mg, ginger root 550mg, ginko biloba 125mg, turmeric 500mg, cinnamon 2000mg, vit D3 (no K) 10,000mg every other day, and Echinacea 400mg help platelets go down and thin blood.

Regarding exact dosing and supplements see a holistic/functional med dr to confirm.

Also no multivitamins anymore bc B12, A, etc. raise platelets.

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I tried all that you mention plus Pomegranate, Feverfew, Fever Tree tonic, grape seed extract, walnut oil, etc. but after 2.5 years my plt count went to 2057 and I was experiencing extreme fatigue, so I started Hydroxyuria 500 mg, 1 a day. Now 1.5 years later the plt count is down to 757 and I was told to take 2 Hydro's a day, = 1000 mg. BTW, I have Polycythemia Vera and I just turned 76. but,,, I feel OK. No more fatigue, itching, left side upper body pain or bumps under the skin. BE CAREFUL of cinnamon, it will damage the liver if taken in large doses for extended periods of time.

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@healedbytheblood0119

Agreed getting a good Functional Med Dr is key.
But if you have a blood disorder with high platelets my understanding is you shouldn’t be on any K supplements and should also avoid consuming K products…K thickens blood, creates more platelets, creates clots.

The B vitamins primarily B12 are going to raise platelets count.

I have a great Chinese med Dr who’s in process of also becoming a Functional Med Dr and she said same thing to me about Vit K and B but I told her for blood disorders and high platelets we are ppl that this will have negative effects on.

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That’s why it’s so important to work w/your medical team. In my case, they draw blood every 3 months to monitor my levels.

My functional med doc and my my heme doc both say to take “Koncentrated K”. You can look it up. What works for one does not work for all, and there is a big difference in K1 vs K2.

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@robinll

I tried all that you mention plus Pomegranate, Feverfew, Fever Tree tonic, grape seed extract, walnut oil, etc. but after 2.5 years my plt count went to 2057 and I was experiencing extreme fatigue, so I started Hydroxyuria 500 mg, 1 a day. Now 1.5 years later the plt count is down to 757 and I was told to take 2 Hydro's a day, = 1000 mg. BTW, I have Polycythemia Vera and I just turned 76. but,,, I feel OK. No more fatigue, itching, left side upper body pain or bumps under the skin. BE CAREFUL of cinnamon, it will damage the liver if taken in large doses for extended periods of time.

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Thank you for your reply. You’re right same as Rx and OTC drugs natural supplements effectiveness will likely vary from person to person too.

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@sregiani

That’s why it’s so important to work w/your medical team. In my case, they draw blood every 3 months to monitor my levels.

My functional med doc and my my heme doc both say to take “Koncentrated K”. You can look it up. What works for one does not work for all, and there is a big difference in K1 vs K2.

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Yeah I get blood drawn every 3mo too. Hate going. I’ve heard some ppl say going every 2 mo is better but I don’t know.

I’ve not heard of Koncentrated K, just to avoid K in supplements and food, drinks, etc.

If you’re okay taking K it’s your choice, and yes sometimes people react different to the same med or supplement.

I just don’t want the extra clot risk so am avoiding K.

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Have you had any success with the tonic water?

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