Any Success With Natural Treatments for Essential Thrombocythemia?

I am also on a baby aspirin and Hydrea 500 mg. I take that on MWF. In September I started taking CBD gummies and I felt much better. Seems it helped with the Hydrea side effects. I had been taking them 2-2.5 weeks before I went for my blood draw on. 9/25. Platelets were in the normal range but the high end of normal. Hematologist said it would not do me any good to take CBD it would not lower my platelets. I stopped taking the CBD that day, I went back today and they were 495 and the only thing that had changed was the CBD. I go back on 11/30 if they are still at 495 or higher I am going to go back on the CBD and see what the next blood draw shows.

Praying you find your answer.

Well, that is interesting because I was wondering just the other day if CBD might help me, then I just forgot about it. So, your platelets were 495 when you stopped the CBD, but what was your platelet count when you were taking the CBD? You said high end of normal, what is high end of normal? Just trying to see how much it might have worked. Do your platlet numbers fluctuate much anyway or are they pretty much the same every time you get a blood draw?

Today they were 497. Last time they were 427 that is when I was taking CBD. (I had only taken it for 12 days) The time before that they were 475. The highest they have been were 763 and that was before I had started taking HU. I am thinking seriously about taking it again just to see what they are when I go back on the 30th of this month for another blood draw. I could tell right off the bat that the hematologist was not in favor of the CBD. My daughter and husband were with me on that visit and they both caught his remark that CBD would not help. I personally do not like the idea of using CBD but if it proves to me that it is bringing my platelets back down to a normal range I would take it all the time.

Well that's really interesting. If you go back on it, please let me know if it works for you again. I don't know why he would be against it since it's natural.......but I've come to believe that most doctors don't agree with anything natural. Kinda sad when you think about it.

I think so as well. Kick back from Pharmaceutical Companies I guess. My PCP is for CBD if it is purchased from a reliable source and not a corner CBD/VAPE store. I spoke with my husband, son and daughter and they are encouraging me to take the CBD. So with that being said I am going to start taking it tonight and I will let you know on the 30th what my numbers are.

That's awesome and I agree with everything you said. How many did you take per day and what is the strength? I'm going to look into that also and find out more about it. My platelets went up 40 points on my blood work this week and I know it's because I started taking large doses of B12 daily. I had no idea that B12 raised platelets in some people. I'm low in B12, but I guess there isn't anyway to safely raise my B12 levels now. Isn't this fun? LOL! I"m trusting in God tho!

Ask your doctors, but platelet count fluctuation 50 points either side of your average, controlled count isn't significant. And it takes years to establish your "normal."

I have been on hydroxyurea for 5+ years, and my platelets swim between 425 and 525. The hemo calls this "very stable."

If you are going to self-medicate, at least discuss with your doctor what your platelet count goals and normal fluctuations are.
Also be aware that no outside licensing agency is checking the CBD dose of your gummies. Gotta take it on faith that what's in it is what the manufacturer says. That's why docs don't promote "natural" treatments.

Also be prepared for any treatment, including hydroxyurea, to stop working at some point in the years ahead. ET is a progressive disease that gets worse over time, and the only med thought to arrest the disease itself is injectable interferon.

It's unlikely that doctors are getting kickbacks from manufacturers of generic drugs like hydroxyurea that mostly comes from India. Usually kickbacks come from newer, American drugs. There's no point in paying a doctor to prescribe a generic drug prescribed to a few patients with a rare disease like ET. Consider: My hemo serves a four-county area and has a total of 6 ET patients. At a retail cost of $40 per month, hydroxyurea is making the drug company $240 per month.

My GP years ago told me a good rule of thumb is to always ask docs for the oldest effective drug to fix what ails you. These have a clear, long track record of side effects (fewer recalls and ugly surprises), and they are usually the cheapest. Hydroxyurea is one of those drugs.

If you want to worry about the pharmaceutical industry, worry about the fact that American companies sell formulas to foreign countries as soon as the patents that make them mega-bucks run out. That means our access to cheap, effective generic drugs is dependent on our relationships with foreign countries. An economic collapse, natural disaster, or political turmoil in those countries could restrict or cut off supplies. We need sources of generics closer to home.

I have found that doing what my doctor wants me to do is a good survival strategy. I asked a doctor what I could do to increase my chances of survival. He said: Take the prescribed medication, and show up for all your appointments.

I understand the urge to want to know more, but I am also aware of my own limitations. I went to college, but I do not have an MD or PhD. in a relevant field. After looking at some medical research papers, I now think that those qualifications would be the minimum needed to evaluate treatment possibilities. I trust in science, and I trust highly educated people who have dedicated their lives to the pursuit of truth, so I trust my doctor to give me the best evidence-based information.

If my doctor told me to take CBD, I would do it, but I am not going to run an amateur science experiment on myself. The stakes are too high.

I take the CBD gummies. They are 25 mg each . I started back Thursday might and took a whole one. I felt a little hung over the next morning to last night I took a half of one. Felt better today. My body is very sensitive to. meds and I don't have to take very much.

I just received my official diagnosis today & have an appointment on the 26th of this month to discuss starting hydroxyurea. My sister in law & brother are licensed to grow & sell himp & produce CBD. One is a OB/GYN & the other has a PHD in biochemistry. They have both suggested that I try CBD before the hydroxyurea. I'm not afraid to try theirs since I know how its produced & she only uses coconut oil to mix it with. They know that I tend to be sensitive to a lot of medications out there. I'm definitely interested in what you find out.