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.

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appraiser1946 | @appraiser1946 | Sep 4, 2024
In reply to @marnie12 "You might want to check your ferritin and iron levels at your General Practitioners office. I..." + (show)
@marnie12

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!

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Thanks so much for your reply. This is very helpful and I will have my GP check my blood test for these items. Wishing you the best in your journey with a ET

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claire39 | @claire39 | Sep 5, 2024
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!

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Thank you so much for the feedback. I will check this out at our local health food store. Hope everything is good with you…..Claire

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bchampagne62 | @bchampagne62 | Dec 31, 2024
In reply to @cbabby "I have Essential Thrombocytosis- JAK 2 Mutation. My platelets have been way over a Million- 1..." + (show)
@cbabby

I have Essential Thrombocytosis- JAK 2 Mutation.
My platelets have been way over a Million- 1 million 531 thousand to be exact.
I don’t take aspirin anymore- (does nothing for me) I take 450mgs of Vitamin E- Natural blood thinner, Anticoagulant.
I was also told to take Hydroxyurea which I had an allergic reaction- I now take Resveratrol- 3000 mg daily.
I also take cinnamon- salmon (Omega 3’s) Vitamin D3-
I no longer have headaches with taking these.
My skin doesn’t tingle anymore- if I do get a headache? I take Tylenol.
Diet! Mediterranean diet to be exact. Blood is a protein- staying away from meat that will increase high platelets.
I now drink a gallon of water daily. Water decreases platelet count.
For the tingling in my toes?
Gabbapenten 100mg.
That takes it away.
With high platelets- watch your blood pressure? Mine went up- I’m now in 40mg of Lisinopril.
I can’t remember when my platelet count was less than a million- lol
All you can do is manage the symptoms and help your body by decreasing the platelet count.

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I take hydrea 2000 mg a day for 20 years know getting skin cancer. I don't know what else to take since this has been keeping me alive but know side affect is this. Hematologist has no answers ..
Don't know where to turn any suggestions

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2 replies
eileen11108 | @eileen11108 | Jan 1 7:23am
In reply to @bchampagne62 "I take hydrea 2000 mg a day for 20 years know getting skin cancer. I don't..." + (show)
@bchampagne62

I take hydrea 2000 mg a day for 20 years know getting skin cancer. I don't know what else to take since this has been keeping me alive but know side affect is this. Hematologist has no answers ..
Don't know where to turn any suggestions

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@bchampagne62
2000 mg daily of Hydroxyurea seems like an extremely high dose. My suggestion to you is to get a second opinion from an MPN specialist even if you have to travel.

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1 reply
janemc | @janemc | Jan 1 7:37am
In reply to @eileen11108 "@bchampagne62 2000 mg daily of Hydroxyurea seems like an extremely high dose. My suggestion to you..." + (show)
@eileen11108

@bchampagne62
2000 mg daily of Hydroxyurea seems like an extremely high dose. My suggestion to you is to get a second opinion from an MPN specialist even if you have to travel.

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Agree . . . 2000 mg a day for 20 years?

I have read that HU can lose its efficacy with prolonged use, so maybe your oncologist has been increasing your dosage over time?

But to me it seems a better strategy would be considering alternative treatments for your ET.

As Eileen says, find an MPN specialist for a second opinion.

Do you have a good dermatologist keeping a close eye on your skin? Many lesions can be fairly easily removed, if caught at an early stage.

Let this be a reminder to all of us. HU makes us more vulnerable to skin cancer. Use a mineral-based sun cream, wear a sun hat, cover as much of your skin as possible when you have to be in the sun.

bchampagne, let us know how it goes.

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1 reply
nohrt4me | @nohrt4me | Jan 1 9:32am
In reply to @bchampagne62 "I take hydrea 2000 mg a day for 20 years know getting skin cancer. I don't..." + (show)
@bchampagne62

I take hydrea 2000 mg a day for 20 years know getting skin cancer. I don't know what else to take since this has been keeping me alive but know side affect is this. Hematologist has no answers ..
Don't know where to turn any suggestions

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You might ask your doc about anagrelide, Jakafi, or Pegasys if you are maxing out on HU. If he draws a blank on these suggestions, I agree it's time for a second opinion. These side effects can become more discouraging than the disease. It's hard to get doctors to address quality of life sometimes.

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lynnevb | @lynnevb | Jan 1 3:16pm

https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf
I think you will find this helpful. It will take a couple of readings before it all becomes more clear.
I suggest a second opinion with someone who specializes in Blood Cancers. I have had this since 2003, so going on 22 years now. Baby aspirin is a key in preventing blood clots (stroke, blindness, heart attack) and microvascular ischemia (headaches, tingling, burning, itching, visual disturbances). Hydrea or other meds such as pegasys, anagrelide, or Jakafi will decrease the number of platelets. Review the article and then decide. Facts and research are important and correct resources and medical expertise can improve our lives.
Hope this helps.

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bchampagne62 | @bchampagne62 | Jan 2 10:13am
In reply to @janemc "Agree . . . 2000 mg a day for 20 years? I have read that HU..." + (show)
@janemc

Agree . . . 2000 mg a day for 20 years?

I have read that HU can lose its efficacy with prolonged use, so maybe your oncologist has been increasing your dosage over time?

But to me it seems a better strategy would be considering alternative treatments for your ET.

As Eileen says, find an MPN specialist for a second opinion.

Do you have a good dermatologist keeping a close eye on your skin? Many lesions can be fairly easily removed, if caught at an early stage.

Let this be a reminder to all of us. HU makes us more vulnerable to skin cancer. Use a mineral-based sun cream, wear a sun hat, cover as much of your skin as possible when you have to be in the sun.

bchampagne, let us know how it goes.

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I have had 7 surgeries to remove it since June and a number of freezing sessions.when I say they don't know what to do it is true. 2000mg is down from 4000 I used to take...what does MPN stand for?

REPLY
1 reply
janemc | @janemc | Jan 2 10:29am
In reply to @bchampagne62 "I have had 7 surgeries to remove it since June and a number of freezing sessions.when..." + (show)
@bchampagne62

I have had 7 surgeries to remove it since June and a number of freezing sessions.when I say they don't know what to do it is true. 2000mg is down from 4000 I used to take...what does MPN stand for?

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"MPN" = myeloproliferative neoplasm!

How's that for a tongue twister?

MPNs are blood cancers, including ET.

I hope your intensive skin cancer treatment phase will end soon.

Even more, I hope you find an MPN specialist to review your treatment options. You have been taking a LOT of HU.

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