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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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janemc | @janemc | Apr 13 7:00am
In reply to @treeore "How important is the aspirin if you are being treated and the treatment has brought blood..." + (show)
@treeore

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

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This is a great question for your doctor.

May I suggest that you continue taking aspirin until you can have that discussion? Quitting "cold turkey" isn't a good idea.

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sudutoo | @sudutoo | Apr 13 9:18am

So, in about 1983 or 1984 I was told after a plasma donation that I had "sticky blood." The nurse said no more, but adamantly insisted that I say that the remainder bag was my blood, I knew something was up because I heard the centrifuge operator say? "Oops," so I did not know whether to claim the blood as mine. I told the nurse that it had my name on it but I did not know whether it was my blood. We finally came to an agreement and the blood was reintroduced to my body. I worried that it was not my blood due to some accident or error by the centrifuge operator.
So, is "sticky blood" a symptom of ET or some other blood issue?
I was diagnosed in about early 2011 with elevated platelets, thrombocytosis and JAK gene and began treatment with HU. It seems to be manageable but Dr. is concerned, but has not expressed cancer, yet as I read these posts, ET is a form of cancer to some, but not to others? Worried a bit about lymph nodes, bruising and now liver; may be that I am drinking too much beer.
Sticky blood.

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sudutoo | @sudutoo | Apr 13 9:30am
In reply to @winmil99 "really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to..." + (show)
@winmil99

really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to "donate" I was diagnosed 1 yr ago plts 500..go up to 650..esp if I have infection like a cold... I take low dose aspirin for now..it they hit 700, I will start on HD... whole thing is kinda scary...no reason to get it other than a mutation..I have identical twin who does NOT have this.

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So, I have a history, although short, of donating whole blood. Should one consider that my blood was tainted and that I should never have donated? The last whole pint that I donated, the nurse asked me if they would be allowed to "experiment" with my blood. I said yes until a military operative showed interest in the blood due to the permission; I had to tell the nurse: "No, as that would be a war crime, experimenting on a person by a military, but yes, the blood bank may."

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sudutoo | @sudutoo | Apr 13 9:33am
In reply to @treeore "How important is the aspirin if you are being treated and the treatment has brought blood..." + (show)
@treeore

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

Jump to this post

I would prefer to be on aspirin rather than warfarin or Eliquis.

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sudutoo | @sudutoo | Apr 13 9:38am
In reply to @sudutoo "I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I..." + (show)
@sudutoo

I have had diagnosed thrombocytosis for better than seven years. Caught the high count when I had a blood test done in hospital; treatment has been hydroxyurea and I also take a full size aspirin before bed, chewed. I have blood drawn every three months and hematologist visit every six months. My understanding is they do not know what the cause is; Dr., who is also an oncologist, had DNA done on blood on initial visit and found gene toward leukemia (JAK, I think), but no signs of cancer. The aspirin is something that I have taken for many years and was not prescribed, but my doctor has not said to reduce or discontinue. 700,000+ when found but now are around 400,000 to 530,000. The hydroxyurea is said to be working. If you are not interested in medications, you might discuss it with a professional whether you could donate platelets, if you are on medication this is not allowed, depending on the medication, I suppose. Potential stroke is the rational presented for treatment. I asked if diet could be a potential aid, and was told no.

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It has actually been thirteen years; unless one counts the "sticky blood" episode at the plasma donation center; which would make it forty years.

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sudutoo | @sudutoo | Apr 13 9:57am
In reply to @winmil99 "really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to..." + (show)
@winmil99

really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to "donate" I was diagnosed 1 yr ago plts 500..go up to 650..esp if I have infection like a cold... I take low dose aspirin for now..it they hit 700, I will start on HD... whole thing is kinda scary...no reason to get it other than a mutation..I have identical twin who does NOT have this.

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HU hasn't seemed to given me any problems unless it is sexual disfunction, although that could be due to age or another medication. My hair and head of hair are thinning, but that could also be due to other factors, as I am sixty-three.
There is a possibility that ET may cause insomnia and then a following of mental breaks?

REPLY
sudutoo | @sudutoo | Apr 13 10:21pm
In reply to @winmil99 "really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to..." + (show)
@winmil99

really, no one wants plts with JAK2..and they rebuild so fast, it doesn't really help to "donate" I was diagnosed 1 yr ago plts 500..go up to 650..esp if I have infection like a cold... I take low dose aspirin for now..it they hit 700, I will start on HD... whole thing is kinda scary...no reason to get it other than a mutation..I have identical twin who does NOT have this.

Jump to this post

I understand, but I have had an Uncle that died of leukemia and taking of HU may lead to a slight propensity of said? I do consume quite a bit of beer and that is said to cause a bit of platelet elevation, but beer is quite nutritious? If I go in the meantime, I may have some kind of "Duty" to do. I usually, unless I am killed, just go in my sleep, quite peacefully. I have "walked out" before; some people would like me to "hoof it," as we are deer folk.

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milkweed | @milkweed | Apr 14 9:15am

I’ve had ET since 2017 as well with similiar levels. I had severe allergic reactions to the first 3 drugs and have finally settled on Jakifi. I have no daily side effects and my level are almost normal. I take Asprin 81 mg as well. Hematology is complicated so even though arnica is possibly thinking your blood it may not have the same pathway as Asprin and may not meet your needs to prevent a stroke. This nothing to mess around with, strokes rob people of their daily pleasures and can render you without speech, mobility and cognitive function. I’m not trying to scare you these are just the facts. The Asprin seems like a small price to pay. Good luck

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