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.

ger63 | @ger63 | Apr 11 7:10am
In reply to @nohrt4me "ET, cancer or not? I realize doctors disagree. But be aware that if you are applying..." + (show)
@nohrt4me

ET, cancer or not? I realize doctors disagree. But be aware that if you are applying for more life insurance, one question is "have you been diagnosed or treated for cancer in the last year?"

If your insurance company defines ET as a cancer and you tick "no," you may jeopardize your policy.

It's hard to find answers on this, but one patient handout notes that insurance companies vary. https://www.medlink.com/handouts/essential-thrombocythemia#

Please discuss this with your insurance agent if you are in the market for life insurance.

Gotta love ET. It probably won't kill you, but it will complicate a lot of stuff!

Jump to this post

This is one of the best articles I have read related to ETA. Thank you so much.

REPLY
Rhonda Gregory | @rjgregory440 | Apr 11 9:39am
In reply to @nohrt4me "ET, cancer or not? I realize doctors disagree. But be aware that if you are applying..." + (show)
@nohrt4me

ET, cancer or not? I realize doctors disagree. But be aware that if you are applying for more life insurance, one question is "have you been diagnosed or treated for cancer in the last year?"

If your insurance company defines ET as a cancer and you tick "no," you may jeopardize your policy.

It's hard to find answers on this, but one patient handout notes that insurance companies vary. https://www.medlink.com/handouts/essential-thrombocythemia#

Please discuss this with your insurance agent if you are in the market for life insurance.

Gotta love ET. It probably won't kill you, but it will complicate a lot of stuff!

Jump to this post

I can tell you from experience that in the U.S. you CAN get life insurance with ET, however, it will come at a premium.

REPLY
1 reply
lynn22 | @lynn22 | Apr 11 12:10pm
In reply to @lynnevb "I have had headaches and tingling in extremities when I briefly went off the daily baby..." + (show)
@lynnevb

I have had headaches and tingling in extremities when I briefly went off the daily baby aspirin. Once i restarted the aspirin all of the headaches and tingling went away. Baby aspirin is to prevent stroke or cell death of major and minor organs. I was told the headaches and tingling are called microvascular ischemia (small vessel inadequate blood supple to an organ). If it goes untreated such as stopping the baby aspirin then blood cannot get to the brain or eyes or vessels of the heart, kidney and other important organs so then a person could have a stroke (decreased blood to the brain), heart attack decreased blood supple to the heart), blindness (decreased blood supply to the eye). I do not want to scare anyone but all of the research states that aspirin is important in preventing problems.
Good luck to you and everyone with this diagnosis.

Here is a document for your review.
https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27

Jump to this post

Agree, it is just unfortunate for those of us allergic to it

REPLY
nohrt4me | @nohrt4me | Apr 11 3:46pm
In reply to @rjgregory440 "I can tell you from experience that in the U.S. you CAN get life insurance with..." + (show)
@rjgregory440

I can tell you from experience that in the U.S. you CAN get life insurance with ET, however, it will come at a premium.

Jump to this post

It may. Again, it varies, and I have not added on more life insurance since my diagnosis. However, given that life insurance companies basically want to get as much money as they can before you "cash out," I am guessing most will use an ET diagnosis to charge higher premiums. Could they also use an undisclosed diagnosis to deny payment? Again, don't know, but prudent to talk to an agent.

REPLY
sregiani | @sregiani | Apr 12 8:10am

Hi, are you still taking Arnica? If so, is it still helping? My doc has suggested 30c, but I’ve read others are taking 9c. A baby aspirin is keeping my platelets around 600, but I’d try anything else that might work short of the “real drugs”.

REPLY
2 replies
sudutoo | @sudutoo | Apr 12 8:43am
In reply to @sudutoo "It would be interesting to know if these conditions are male or female dominant or if..." + (show)
@sudutoo

It would be interesting to know if these conditions are male or female dominant or if there are no value differences due to gender.

Jump to this post

So, I am male and thus my condition is quite rare?

REPLY
memere09 | @memere09 | Apr 12 9:14am

Very interesting article
Thank you

REPLY
nohrt4me | @nohrt4me | Apr 12 10:16am
In reply to @sregiani "Hi, are you still taking Arnica? If so, is it still helping? My doc has suggested..." + (show)
@sregiani

Hi, are you still taking Arnica? If so, is it still helping? My doc has suggested 30c, but I’ve read others are taking 9c. A baby aspirin is keeping my platelets around 600, but I’d try anything else that might work short of the “real drugs”.

Jump to this post

Check with your doc, but my understanding is that aspirin does not lower platelet counts, it just makes them "slippery" so that they are less likely to clot. There's some research being done on clotting factors of platelets of MPN patients, specifically on why super high platelet levels cause bleeding, which seems counter-intuitive. That research is WAY beyond my grasp, but it does suggest that there are things about our blood cells, and blood cells generally, still to be understood.

REPLY
treeore | @treeore | Apr 12 11:10am
In reply to @lynnevb "I have had headaches and tingling in extremities when I briefly went off the daily baby..." + (show)
@lynnevb

I have had headaches and tingling in extremities when I briefly went off the daily baby aspirin. Once i restarted the aspirin all of the headaches and tingling went away. Baby aspirin is to prevent stroke or cell death of major and minor organs. I was told the headaches and tingling are called microvascular ischemia (small vessel inadequate blood supple to an organ). If it goes untreated such as stopping the baby aspirin then blood cannot get to the brain or eyes or vessels of the heart, kidney and other important organs so then a person could have a stroke (decreased blood to the brain), heart attack decreased blood supple to the heart), blindness (decreased blood supply to the eye). I do not want to scare anyone but all of the research states that aspirin is important in preventing problems.
Good luck to you and everyone with this diagnosis.

Here is a document for your review.
https://www.nccn.org/patientresources/patient-resources/guidelines-for-patients/guidelines-for-patients-details?patientGuidelineId=27

Jump to this post

How important is the aspirin if you are being treated and the treatment has brought blood lab numbers into the normal zone?

REPLY
2 replies
lynn22 | @lynn22 | Apr 12 2:26pm
In reply to @sregiani "Hi, are you still taking Arnica? If so, is it still helping? My doc has suggested..." + (show)
@sregiani

Hi, are you still taking Arnica? If so, is it still helping? My doc has suggested 30c, but I’ve read others are taking 9c. A baby aspirin is keeping my platelets around 600, but I’d try anything else that might work short of the “real drugs”.

Jump to this post

Yes I am, my homeopath said I can take 200 3 times a day and yes I find it helps, it thins the blood and no side affects, but it does not reduce platelets. Always best to seek advice on what to take.

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