Any Success With Natural Treatments for Essential Thrombocythemia?

Very recent diagnosis. Platelet count 1050.
6 more vials of blood drawn - awaiting results.

Yes, thanks. But the OP was about "natural" treatments for ET. Just clarifying that neither Dr Berg's supplements nor dietary changes will address the underlying mutation that causes abnormal platelets to proliferate.

There is certainly a nutrition component to ET that conventional docs don't pay attention to. Lowering overall stroke risks with heart healthy diets is one area where doctors should advise ET patients. Another is in the area of anti-inflammatory diets, which may help with symptom burdens of ET. This diet is now being studied by the MPN Quality of Life group to see if benefits can be quantified. It's basically a Mediterranean diet and healthy for most people.

Again, diets may have benefits for ET patients, but they will not address the mutation or control platelet proliferation.

I have talked with patients who claimed to be able to control platelets with various natural treatments. They think they have success if their platelets drop by 10 or 20 points in a month. What new patients don't understand is that your platelets can vary by 75 to 100 points from test to test. I run between 420 and 510 on my current HU dose and have done for the last five years. That is considered stable by the hemo.

I feel bad when I see fearful people wasting energy trying to treat themselves because they are needlessly frightened of HU. A few months on a low dose of hydroxyurea is not going to cause any lasting effects, risks, or disfigurement. If a patient can't stand it, they can quit. Ironically, many people (me included) feel BETTER on HU. To just reject it out of turn because it's "chemo" is not logical.

I had my bloods taken the other day, my platelets have gone down some since my last appointment. On August 28th my platelet count was 684 and then my new count is 614 as of 2 days ago, which is about 1 month later. I'm still not taking the chemo and doing this naturally. I'm drinking dandelion root tea, essiac tea, asprin and I drink 1 small can of tonic water with quinine every day or every other day, and I recently added a low dose of vitamin B3 to my regimen. These are the things I researched and decided on for my own treatment to lower my platelet count.

Since i've had such great results over the last month, i'm going to continue on and she is going to do my blood work every 2 weeks now instead of monthly so i'll continue to update .

This is in no way giving anyone here medical advice as i'm not a medical professional and i would never tell anyone what to do or advise them about their own health in any way, shape or form, i'm just documenting my own journey. Everyone has to do what they think is right and this is what I have decided on for myself.

I am glad you added the last paragraph….we each have to be our own advocate. 🙂

My WBC is high but since I started drinking black tea an organic earl grey plus trying to incorporate greens and mushrooms and trying to block my stress with Ashwagandha I have seen results also. Good luck on your journey.

Over 20 years ago, approaching 50, I was diagnosed with ET having lived with a platelet count around 1700....I was sent immediately to a hematology oncologist who suggested a then-new drug, Anagrelide (Agrylin was the brand). It worked, still works, it's not considered an antimetabolite like hydroxyurea. When I had to change physicians after 10 years, the new doctor put me through several months insisting I was on the wrong medication, including painful bone-marrow tests. I found another doctor, went back to Anagrelide...which has kept my platelets around 400, had no side effects to date. While medicine advances I do listen to my doctors as well as my body. If it works, why stop doing it? That works for me. Of course, I am not a doctor, enjoy natural cures and eastern medical practice as well as the mind/body connection. Stay hopeful and healthy.

Keeping you in my prayers....those repeated blood tests are a drag. Hopefully, once you get the right routine things will calm down. After 20 years, I only see the hematologist annually unless I'm feeling poorly, GP checks blood, platelets are out of wack.... Dosing with Anagrelide has barely changed over the years.

I started doing YouTube chair yoga during the pandemic when my live class got cancelled. I'm 70, and can now do many of the standing versions of the chair exercises now and can stand up from a squatting position! My daily yoga reminds me that my old carcass can do more than just fall apart, so there is a helpful mental benefit.

I've been on HU for three years with inconsistent results (CALR) my Hema is hesitant to transition me to Anagrelide. Hmmm? I haven't had much luck diagnosing on Dr Google. FWIW I've been over 1 mil several times. take Xarelto, average 5 hrs weekly biking, Mediterranean diet. One thing that's worked for me is taking HU before bedtime to increase it's effectiveness, google🤷‍♂️ cited studies showing statins were more effective when lying in the liver overnite.

Interesting about nighttime meds. I take HU at night because it still gives me headaches. I'd rather wake up with a headache that usually resolves with morning coffee than have headaches that persist during much of the day.