Essential Thrombocytosis: Do platelets ever decrease without meds?

@mmkennedy Yes, that's my understanding. My dad had ET and his platelets began to drop spontaneously very fast a few months before he died. The hospice nurse suspected he was progressing to myelofibrosis, but at that point he was on his way out with COPD, so they weren't really worried about MF at that point.

When I was first diagnosed, my hemo told me that a first sign of progression to MF was a significant, continuing drop in platelets.

For the last 2 months I have been taking HU 3 x a week after being on it 7 days a week 500mg. Doctors said that because the Hu kills the cells to stop the plates from overproducing it will effect the red cells the white cells as well as the platelets. So far the last few months my plate numbers have increased 9 points but the white cells that were normal 5.2 went to 5.3 my red cells were low 3.57 but last week they went up to 3.70 which is still low . Doctor says it is a delicate balance and some numbers may be low and some high. If my plates get to 440 we will add 1 pill a week until they get below the 440.

I may have already posted this. When I got shringrix shot, my platelets dropped quite a bit, so I had to go back every week for blood tests doctor was concerned that ET could be progressing to MF or PV, didn't realize it was result of shot the week before my 3 month blood test. So platelets do respond to things. Didn't go down when I had my DTaP shot......next shot will be RSV BTW I did a search on shringrix and ET and found confirmation of the platelet drop.

@garyr443 my eGfr was usually hovering around stage 3a or 3b because my creatinine count was just a bit too high. I read on kidney medical sites that eGfr numbers alone are not very accurate for diagnosing kidney disease. Other tests are necessary. My numbers improved when I started Hydrea. I was urinating more because I was thirsty and drinking more water -lots more. I think it was clearing out my kidneys so my creatinine went down. I’m in the kidney disease safe zone now! I’ll keep drinking water to help my kidneys.

@lynns51 Exactly! That's what I've been saying since 2009 when they first accused my kidneys of doing something bad! As for my creatinine, yes, it has been higher recently, as noted by my former doc who quit on me. It's because my diet is mostly meat, especially since finding that the foods the nutritionists are pushing caused my platelet count to rise! I've been left with nothing else to eat but meat! Never mind that there are people who eat an all-meat diet. What are their doctors telling them? Our paleolithic ancestors ate a diet of mostly game meat. It wasn't until the Neolithic that people started being farmers and eating grain and dairy, which caused diabetes! The people who need daily insulin shots today are direct descendants of Neolithic farmers!

@vickieannb57 There seems to be a lot of variation between hematologists. Mine has had me on 500mg HU daily for 12 years, with 2 doses (1,000mg) once every third day. In other words, 1, 1, 2, 1, 1, 2...etc. most of the time, it has worked for my platelet count, keeping it under 400,000. When it hasn't it's because of a change in my diet or my supplements. Trying to find out what I can and cannot eat has been the biggest problem for me. I tried pink salmon and tuna, with cheddar cheese, for a month or two during early 2026, and that drove my platelets up to 495,000. Once I quit the cheddar and the "fatty fish with Omega 3 fatty acids" that doctors and nutritionists keep recommending for everyone, my platelet count returned to below 400,000. A year or three ago, it was my addition of COQ10 to my supplements that drove my platelet count up and, again, as soon as I stopped taking the COQ10, my platelets returned to normal.