Essential Thrombocytosis symptoms

Welcome to Connect, @clickpaw. There are diets posted online to potentially lower platelets by reducing inflammation in the body. But understanding the reasons behind elevated platelet counts is essential for determining effective strategies for reduction.
Are you working with a hematologist to find out the underlying cause for your elevated platelets? Have you had any genetic testing done to check for acquired mutations in genes such as CALR or JAK2 which can cause Essential Thrombocythemia (ET)?

Hi, any updates? My platelets are now 746, my highest. Seeing my Heme Doc on Tuesday and don't want to take HU due to side effects of skin cancers. I've had enough of those already and I enjoy being in the sun daily. Any anecdotal experience you can share might be helpful for all of us. Thanks!
Sherry

Have you had a bone marrow biopsy to be sure that what you’re dealing with is ET and not another myeloproliferative issue such as MF or PCV? You may want a second opinion. My Dr originally diagnosed me with ET based on blood work, but similarly Hydroxurea was not keeping my platelets down. I sought a second opinion and was referred for bone marrow biopsy, I have Myelofibrosis, not ET. This is from what I understand a common misdiagnosis.

2000 mg of HU is rather excessive. I started out with 500 mg per day seven months ago. Now on 500 mg 4 times per week for the last two months as original dosing was driving platelets too low. Now my platelet count is right in the middle (350). I have a history of skin cancer and just had two biopsies of suspicious lesions removed from the top of both hands. Dermo doc thinks they are squamous cells, waiting for lab results.
There’s no free lunch with HU therapy. There’s always something lurking in the background. Finding the right hematologist is critical to your survival, as well as paying attention to any body changes you notice. I’m fortunate to have found a professional who is a compassionate, caring physician.
I’m reluctant to name him on this forum as I’ve already received scam emails using the Mayo Clinic connect blog network.

Good luck with the symptoms. My platelet count was over 1800 when ET was accidentally found 20+ years ago. Anagrelide (agrylin) was new and seemingly had fewer side effects than hydroxyurea so I went with that. Platelets are under 400 as long as I'm good about medication which has little or no side effects. I do see an oncology hematologist and only recently had a bone marrow biopsy with reported results under mild sedation so NO PAIN. Glad I did it, nothing new. I hope that you're getting out and moving around. I move to a chair first thing in the morning (meditation for a bit) which gives my circulation a chance to 'wake up.' Tingling, numbness and cramps that are bothersome occur when I've spent too much time just sitting or lying down (like, all day after a good night's sleep, reading or watching tv). Staying healthy at 74 is a full time job no one is going to do for me.

Did blood work two months ago and my platelets had gone down 10,000…better than nothing but still over a million. Cholesterol was significantly lower.
Drew Blood again yesterday and see my doctor on Monday so more info then.

I have gray/red hair and pale skin -- perfect skin cancer fodder. I have been on a pretty high dose of HU for more than a year.

I wear a sun hat anytime I'm outside, even when driving. I wear sun-blocking clothes too: dark-colored, densely woven fabrics are best.

For me, taking these precautions is better than worrying about blood clots. I'm not overjoyed to take HU, but I want to outlive my dogs and my elderly husband.

There are other meds for ET . . . ask your doctor! Hope you have a productive appointment to figure out what is best for YOU!

When will Cadbury sponsor a study to prove that CHOCOLATE cures ET????

Hi stickball 1,
I recently was diagnosed with ET because of high platelets. Hematologist recommends I take 500 twice per day which seems high to me when she said she was starting me on low dose. I weigh 106 pounds. I already have had three basal cell carcinomas removed prior to this, so concerning to me Hydrea perhaps will cause me more of them. I had no symptoms prior to going to doctor for enlarged joint in my right ring finger proximal interphangeal phalange. And BCC removal. No diagnosis received on my finger joint which is similar to when I had it evaluated by hand orthopedist in 2023 with MRI. All this is very confusing and stressful to me and now my BP spikes occasionally when I am talking about my situation. Normally my BP is fine and I have been taking it at home everyday for three weeks now. At doctor visits my BP is high on diastolic and BP which earned me an Rx for liprinosil on top of everything else!
How high were your platelets when you were diagnosed? 350 is fantastic now.
Thanks for sharing and have a blessed Sunday.

Hi,
I am in the USA and no bone marrow biopsy was done on me to confirm ET. I have high platelets, elevated white blood cells, negative JAK2, no elevated C-reactive protein, normal sed rate. I also have no symptoms. This is all very confusing and concerning to me. Why is there not a definitive way to diagnose?

Hi @1pearl I am also in the US in VA, currently receiving treatment from a specialist at Massey Cancer Center.

I was initially treated at a regional cancer center where blood work confirmed a CALR mutation. The Dr assumed due to elevated platelets I had ET
and I was treated for quite some time with hydroxurea, although ultimately it did not keep my platelets down the way the Dr hoped, so he took me off of it due to side effects.

At this time I sought a second opinion at Massey, and a bone marrow biopsy was recommended. This is apparently the only way to determine whether the issue is ET, Polycythemia Vera or Myelofibrosis. They have to analyze the bone marrow.

It was determined from the bone marrow biopsy that I have MF.

Based on my experience, I would recommend that you see a specialist to confirm your diagnosis.