1. < Blood Cancers & Disorders

Essential Thrombocytosis symptoms

Posted by lynn22 @lynn22, Apr 5, 2023

Having had high platelets since 2017 and doctors could not find a cause I paid to see a haematologist and I was diagnosed with ET in 2019. With a platelet level of 723 I was put on baby Asprin but unfortunately it did not suit me. I was then put on Clopidogrel but had an allergic reaction to it. I have refused to have a biopsy so far but said I will if levels go over 800. The haematologist made it quite clear that I am at a high risk of having a stroke. So I am taking Arnica homeopathy twice a day to thin the blood which helps the headaches which I have suffered with for years and take 2 paracetamol a day, usually when I wake-up as that’s when I get most headaches and sometimes it is like having a massive hangover. I also get tired and lightheaded and since January I am suffering with constant tingling hands and feet which according to the internet is another side affect. But as of two weeks ago I have tingling lips and tongue which is not listed as a side affect and I am wondering if anyone else also has these symptoms tingling symptoms. Having tried to see a doctor the surgery have said I can have a routine appointment which is weeks away. My doctor has agreed that I have a blood test every 3 months to monitor, at the moment it ranges from 750 to 800. Any advice gratefully received.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

lyno29 | @lyno29 | Aug 16 11:57am
In reply to @cbabby "I decided to go naturally. I’m not saying that it will work for everyone- seems to..." + (show)
@cbabby

I decided to go naturally. I’m not saying that it will work for everyone- seems to be working for me.
I had an allergic reaction to Hydroxyurea. Chemo pill specifically required for ET (Essential Thrombocytosis)
I found a natural supplement compared to Hydroxyurea, Resveratrol. 1500 mg a pill. I take 2.
My Dr than suggested Anagrealide.
Which will cause fainting, and dizziness. I already at some points experience these symptoms. I’m told is a blood pressure thing.
So!?- if I’m already lightheaded/dizzy. Why would I take a pill that will increase this, and might/could possibly faint.

I searched things to do naturally. I’m found Resveratrol.
Along with Vitamin E- which is a natural blood thinner- and an anti-coagulant.
Both taken together works good for me.

Your blood is a protein. Meat (red) steaks, hamburger, etc are also a protein.
The Mediterranean diet is recommended for people with ET. You want to do anything and everything to get that platelet number down.
You don’t want to increase it.
Leafy greens and vegetables are great source to aide in bringing that number down.
Water! I drink a gallon a day. Not saying you have too.
But water isn’t a great source to flush everything out of your system. Plus, it’s great for your kidneys.
Also- Cranberry juice. Drink regularly.
Salmon, shrimp. Etc. won’t increase your plates counts.

Jump to this post

Hi, how are you doing.. I’m going the natural way as well
Arnica, clean diet, detox of mold parasites and yeast, fun times.

REPLY
claire39 | @claire39 | Aug 17 7:04am
In reply to @lyno29 "Hi! Are you still taking Arnica? And how are you doing?" + (show)
@lyno29

Hi! Are you still taking Arnica? And how are you doing?

Jump to this post

Hi. Please tell me in what form are you using Arnica and how is it being helpful.
A few years ago I had some pain cream with Arnica and it work well on a knee injury. Thanks

REPLY
1 reply
lyno29 | @lyno29 | Aug 17 8:54am
In reply to @claire39 "Hi. Please tell me in what form are you using Arnica and how is it being..." + (show)
@claire39

Hi. Please tell me in what form are you using Arnica and how is it being helpful.
A few years ago I had some pain cream with Arnica and it work well on a knee injury. Thanks

Jump to this post

Hi Claire, I’m taking a homeopathic arnica 6c, four drops 4x a day in place of baby aspirin….
I won’t be able to do a blood test till February.
Wanted a more holistic blood thinner than aspirin
and arnica is good for blood circulation and also helps heal emotional trauma. Please consult a homeopathic specialist for the correct dosage as there are different ways to approach it. My platelets are over 1,000,000 so this is me doing what I can in a natural way!

REPLY
2 replies
claire39 | @claire39 | Aug 17 9:35am
In reply to @lyno29 "Hi Claire, I’m taking a homeopathic arnica 6c, four drops 4x a day in place of..." + (show)
@lyno29

Hi Claire, I’m taking a homeopathic arnica 6c, four drops 4x a day in place of baby aspirin….
I won’t be able to do a blood test till February.
Wanted a more holistic blood thinner than aspirin
and arnica is good for blood circulation and also helps heal emotional trauma. Please consult a homeopathic specialist for the correct dosage as there are different ways to approach it. My platelets are over 1,000,000 so this is me doing what I can in a natural way!

Jump to this post

Thank you for this helpful information, I will certainly look into it. Hope all goes well for you, I will try to send an update soon….Claire

REPLY
mattymatilda | @mattymatilda | Aug 18 6:40pm

Hi, yes, those headaches can be debilitating and painful. I’m sorry you’re suffering with many symptoms. have you been tested for polycythemia vera?

REPLY
et1055 | @et1055 | Aug 19 6:21pm

I also experience being tired and lightheaded, as well as tingly lips and tongue on occasion. I’m not sure if it is HU or ET causing these symptoms.
Thankfully I do not have headaches.

REPLY
appraiser1946 | @appraiser1946 | Aug 20 8:03am

I am dealing with my feet. They feel tingly and numb. I am so afraid it is neuropathy caused by ET.. I have had ET since 2022. My hematologist put me on a daily baby aspirin and two 500 mg hydroxyurea. My platelets stay around 400 to 500. One concern I have is my red blood cells are very low. I am extremely tired and weak. Looking at my CBC seems to indicate that I am anemic but the doctors don’t seem to be concerned. Yes, I am lightheaded and have some dizziness also.

REPLY
1 reply
magicgirl | @magicgirl | Aug 20 3:24pm
In reply to @edgy "Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in..." + (show)
@edgy

Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in 2018. I went through all chemos available resulting in most major side effects, skin cancers, nausea, itching, etc. I totally quit all chemo for 3 months to give my system a break from chemicals. I then had a hematologist recommend mini dose of Jakafi, 5 mil twice a day, beginning January 2022. Side effects dwindled to slight anemia and fatigue, although maintaining 10% weight gain, but blood platelets have dropped to within normal range at 415. I'm 84, with metal throughout my body from injuries including a broken spine with rods. I now feel great and plan on going to the century mark.
Run this by your physician and the best of luck in your prognoses.

Jump to this post

I was diagnosed with ET 2/24. Have been taking baby aspirin & hydroxyurea since 3/24. Went from 650 platelets to 373 (7/24). I hope trend will continue. If it continues to lower I may be able to reduce hydroxyurea. Sometimes I have headaches in morning. I feel more tired than normal. And constipation is a big problem. But otherwise I feel pretty good. I hate that I have to be on this med for the rest of my life. But better than having a stroke or heart attack. Good luck everyone!

REPLY
marnie12 | @marnie12 | Sep 4 3:49am
In reply to @appraiser1946 "I am dealing with my feet. They feel tingly and numb. I am so afraid it..." + (show)
@appraiser1946

I am dealing with my feet. They feel tingly and numb. I am so afraid it is neuropathy caused by ET.. I have had ET since 2022. My hematologist put me on a daily baby aspirin and two 500 mg hydroxyurea. My platelets stay around 400 to 500. One concern I have is my red blood cells are very low. I am extremely tired and weak. Looking at my CBC seems to indicate that I am anemic but the doctors don’t seem to be concerned. Yes, I am lightheaded and have some dizziness also.

Jump to this post

You might want to check your ferritin and iron levels at your General Practitioners office. I was told at my Oncologists office that I wasn't anemic, even though I was obviously pale and experiencing extreme fatigue. So I went to my G
P. for specific tests for anemia and the ferritin was very low! It took about 2 to 3 months of no hydroxyuria and iron tablets to have ANY energy again. It's a delicate balance with hu if you become anemic. Can't hurt to get another lab with ferritin and iron levels. Anemia fatigue is horrible. Good luck to you!

REPLY
1 reply
pattycz | @pattycz | Sep 4 5:56am
In reply to @edgy "Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in..." + (show)
@edgy

Hello Lynn, I was diagnosed during a spine surgery with platelets in the mid 700s in 2018. I went through all chemos available resulting in most major side effects, skin cancers, nausea, itching, etc. I totally quit all chemo for 3 months to give my system a break from chemicals. I then had a hematologist recommend mini dose of Jakafi, 5 mil twice a day, beginning January 2022. Side effects dwindled to slight anemia and fatigue, although maintaining 10% weight gain, but blood platelets have dropped to within normal range at 415. I'm 84, with metal throughout my body from injuries including a broken spine with rods. I now feel great and plan on going to the century mark.
Run this by your physician and the best of luck in your prognoses.

Jump to this post

thank you for sharing your story.
Best wishes to you.

REPLY
View MoreView Less
Please sign in or register to post a reply.