Essential Thrombocytosis: Do platelets ever decrease without meds?

First, I am sorry to hear that you have joined the ET club. It's not fun, but it is manageable. To answer your questions in order, your platelets will not decrease on their own. Hydroxyurea (often abbreviated here as HU) is the first-line medication to reduce platelets. It is a decades-old chemotherapy drug that is well tolerated by many of us and is highly effective in reducing platelets. Your genetic mutation is what is referred to as an "acquired" mutation and no one knows what causes these mutations to occur. When I was diagnosed in October, 2023 at age 69 with a platelet count of 792 discovered while getting another condition diagnosed, I, too, was concerned about taking a chemotherapy drug. I started on 500 mg 2x daily and as my platelet count dropped the dose was reduced to 500 mg 2x a day 4 days a week. My platelets remain in the low 200s and the only side effect I experienced was very short, intense headaches (no longer than 30 seconds) that subsided as my body adjusted to the medication. It is worth trying. Good luck to you on your journey - you will find lots of support here!

I was told that the platelets will not lower on their own. I take HD and I was over a million in count, but with Hd they have lowered to 600k. The only side effect I have had is low energy and that is the most complaint.

ET-CALR here x 18 years. On HU for 8 years. When HU is started depends on age, clot history, and mutation type. CALR types like us have a lower incidence of clots. Baby aspirin is often enough until your platelets hit 1,000 or so. Hopefully your doc knows all this.

HU can have side effects for some people. Others like me actually feel better on it, at least initially.

There is no scientific evidence I know of that ET can be controlled with food or supplements, but it doesn't stop people from making claims. I tried CBD oil when that was the hot new fad. Researched dosing and bought from a reputable maker for $50 out of pocket. It gave me acid reflux ... and nothing else.

I am 74 w/Diagnosis 3 years. Plates were above 900 Hydroxy 500mg/day reduced to 5-600s. We added 2more pills per week because numbers bounced around a bit. My shins occasionally feel like sunburned—lasts only a few minutes then goes away. I have not felt fatigued as others report—but i have always been high energy. I fo have brain-fog but not sure Hydroxyurea is the cause.

I wish you well..

Hi, as debhammel said, "Welcome to the ET Club." I'm 76-9 months and was diagnosed 1 yr ago. I cannot find anything that indicates that anyone knows whats causes the stem cell mutation resulting in Essential T vs Reactive T. At least, they have not determined what causes the shift in the DNA, but DNA is not static. There are genes that can be switched on-and-off in other contexts, too. There is just not enough scientific knowledge, yet. I have minor secondary effects from my HU. They have not interrupted my daily routine or affected my spirit. When I'm fatigued, I take a 5-15 minute nap. Then, I go back at it. I've had multiple cases of basic cell skin cancer and 3-4 minor surgeries for skin cancers, so I'm aware that I may have increase skin sensitivity. I have bought light-weight high SPF long-sleeved shirts and long pants for when I'm outside for more than 3-5 minutes. But this wasn't a big shift for me. Also, I've received many "hugs" and words of encouragement and support from the people in this group. Reach out. We understand. We will support you in the ways we are able, with honesty, empathy, caring, and love. May you be blessed and well on the journey. You are not alone.

Read the book The Cheating Cell, what causes the mutations are aging......the cells keep replicating and one day they don't replicate correctly
Author Athena Akt.......... I can't remember last name but was a terrific book

On Hu for 13 months. I am 72. Have very few symptoms dry mouth, random pains.Nothing major they leave in a few weeks the dry mouth and dry skin come back then leave again . Had a few occasions that I am completely spent fog and not able to make another step. It goes away with a nap. My doctor is working with me to reduce my HU for now I take 500mg M,W,F down from 500mg 7 days a week my plates are climbing up but the new high is in the 280 range. So I need to stay below 440 . She said she would increase by 1 pill at a time until I get stable again .But only if I get above 440 hope this helps. I have been lucky as my plates only got to the 600-700 range. Lots of good info here. good Luck

Well, I recently tried a 1 month experiment with cranberry juice as a substitute for Hydroxyurea, and though I was sure it would work at keeping my platelet count normal, it didn't work. So, back to the Hydroxyurea and its side effect of destroying some of my red blood cells and, thus, creating anemia. I've been on HU for 12 years.

@1995victoria Aging could be a factor. The evidence for when I acquired Essential Thrombocythemia is an old medical record that clearly shows a rising platelet count when I was 52. Someone (doctor, lab tech?) had circled it but no one told me about it or did anything about it, so it continued to develop for a decade until I was hit by a bicyclist and my platelet count was discovered to be in the millions. Then the hematology department at Harborview Medical Center, here in Seattle jumped into action. So, I have a hematologist and I've been treated with Hydroxyurea for 12 years, now. I'll be 74 in October.

@vickieannb57 Dosage seems to vary a lot for Hydroxyurea. I've been on 500mg for 12 years, and my hematologist experimented with the frequency for a year or two. We arrived at a schedule of 1 dose per day for 2 consecutive days, followed by 2 doses for one day and then back to 1. So, my dosage schedule is 1, 1, 2 and back again. It seems the dosage and scheduling varies from one person to another, and also with the doctor treating it.