Essential Thrombocytosis: Do platelets ever decrease without meds?

@panamsandy Yep, he's right. Still, there are some articles out there that claim otherwise.

I just saw my Hematologist yesterday and she told me platelets can decrease precipitously which can be an indication that there is potential development of mylofibrosis. If that happens it is time to switch to another medication. And new bone marrow biopsy would be required.

For my purposes, my Dr indicated that HU was primarily focused on preventing thrombotic events (blood clots).

@1pearl I think it differs depending upon which mutation you have, etc. We're all different. Some people have the reverse condition, Essential Thrombocytopenia (low platelets), so they have to do the opposite of what those with ET do, especially where diet is concerned.

Hi @garyr443,
I totally agree with you that every person is different. In my case, I have CALR 1 mutation and high platelets on all my lab tests except that one day when they were 400 lower with me doing nothing differently. They are not going up, but are similar, very slightly less than the initial number that caused my first referral to O/H 1/2025. My red cells are fine but were slightly low on that lower platelet lab day too. My white cells are slightly high and also fluctuate. I prefer to keep my red cells normal and know Hydrea or any other med for MPNs lower all blood cell counts. I want to continue to have my good energy I have always had. I also do not want to induce any more skin cancers as I have had enough of those taking no meds! I wear a hat a sunscreen every day and have for years except when I was a kid. Even then, I wore a visor but no sunscreen.
I do think diet among so many other things is very important to living one’s best life.
I wish you and all dealing with MPNs well.

@1pearl Yep, you've definitely confirmed it. We differ quite a bit. After my experiment with cranberry juice last month, I've left everything in a mess, but I went back to the Hydroxyurea, so now my platelets "should" be coming back down. My red cells, which had gone up, but not enough to make it to normal, will be back to low again, because of the Hydroxyurea, and my white cells will probably still be high. But, I'm just guessing until I have my next CB Diff test the first Friday of August. Meanwhile, I'm still too vain to wear a hat, don't use sunblock (but I do use a bit of Aloe Vera gel). Still eating a paleo diet, mostly meat, which keeps my weight in the 150s and keeps diabetes away, but according to a former doctor (she had them tell me she'd quit her practice, but I think I just frustrated her too much), that puts too much stress on my kidneys (never mind that I still have no symptoms of kidney disease after 17 years, which is how long four doctors have told me I have kidney disease). I see doctor number five in August and I don't know what she'll tell me, yet. According to doc #4, I'm "wavering between 3A and 3B," two years after she congratulated me for dropping back to stage 2 from 3A without me having done anything different. Now, without having done anything different, I'm supposedly worse off! Never mind that my pee is as normal as can be.

@mmkennedy If "platelets" are reducing "precipitously," it sounds like Essential Thrombocytopenia (low platelet count).

@garyr443 That is a good question. If I understand correctly in this instance the low platelets are due to the bone marrow burning out (aka mylofibrosis) and therefore platelets are not being made.

@mmkennedy Maybe that's what happens with people who have Eesential Thrmbocytopenia, then?

@mmkennedy Yep. Explains why the first question my hematologist asks me is whether I've had clots. Of course, I have to wonder how I'd know if it happened? I'd probably have a heart attack or stroke. Some hint, eh?

@nohrt4me I've been on HU for 12 years, so far. Results have been up and down, with what foods I eat either helping or making things worse. Lots of people have told me they've never heard of food having any effect on platelet count, but, not only has it happened, but I can reverse whatever is happening by quitting whichever food it was. Then there are lots of articles on diet for people with Essential Thrombocytopenia. Not so many for people with Essential Thrombocythemia, though, I have found one or two. The really dangerous sources are the nutritionists who think everyone should be eating the same foods, as they don't appear to be aware of either condition and blindly prescribe a "balanced diet" with "omega 3 fatty acids" and "leafy greens." I tried a month or two of pink salmon and tuna and wound up with my platelets shooting through the roof! As soon as I quit the "fatty fish with Omega 3 fatty acids" my platelets returned to normal.