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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1pearl | @1pearl | Feb 10 11:44pm
In reply to @nohrt4me "I believe that in 2004, the only way to diagnose ET was with a bone marrow..." + (show)
@nohrt4me

I believe that in 2004, the only way to diagnose ET was with a bone marrow biopsy. That's about the time my dad was diagnosed.

I wonder if you might have been misdiagnosed and actually had secondary thrombocytosis? Maybe a spontaneous remission? Unexplained things can happen. Hope your doc learns from your case in ways that will help all of us!

There is an inflammatory component to ET that diet and exercise can address. It doesn't reduce platelets for any patients I know, but it can help a lot with symptoms and reduce overall clot risk.

Sadly, there are many individuals and clinics out there claiming to cure all types of cancers with "natural" treatments, which turn out to be massive doses of vitamins or supplements (so not exactly "natural") that are very expensive and don't work.

I tried CBD oil for 8 weeks for sleeplessness when that was the big craze. Told GP I was doing it. She gave me tips. I researched it, purchased from a reputable compounding pharma with third-party testing. Gave myself the recommended dose. Ended up with acid reflux and still couldn't sleep. Doc said she wasn't surprised.

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Hi nohrt4me,
Just today, I received my bone marrow results in just nine days and message from my O/H that now she thinks I may have PMF and not ET and maybe I should see a bone marrow transplant specialist after she gets my “risk assessment” results whatever those are. Such a big change in just one month and so little conflicting data on me! I know I need a second opinion for sure, but do not know how to get a reputable one since I chose a Kaiser Senior Advantage Plan when I just turned 65 and seemed fine which I still do! I just have strange conflicting data when docs check me.
Thanks for listening.

REPLY
2 replies
janemc | @janemc | Feb 11 6:55am
In reply to @1pearl "Hi nohrt4me, Just today, I received my bone marrow results in just nine days and message..." + (show)
@1pearl

Hi nohrt4me,
Just today, I received my bone marrow results in just nine days and message from my O/H that now she thinks I may have PMF and not ET and maybe I should see a bone marrow transplant specialist after she gets my “risk assessment” results whatever those are. Such a big change in just one month and so little conflicting data on me! I know I need a second opinion for sure, but do not know how to get a reputable one since I chose a Kaiser Senior Advantage Plan when I just turned 65 and seemed fine which I still do! I just have strange conflicting data when docs check me.
Thanks for listening.

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You have been through the wringer, 1pearl.

I really hope you are getting closer to a diagnosis and a doctor who knows what she/he is doing.

We're here for you.

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1 reply
janemc | @janemc | Feb 11 7:08am
In reply to @lynnebgraham "The walk was good, a bit tiring, but worth it. I live in Tasmania; it was..." + (show)
@lynnebgraham

The walk was good, a bit tiring, but worth it. I live in Tasmania; it was about 25c here. Today is a lot cooler. I have now set up my treadmill so I can walk and read at the same time. I enjoy reading to pass the time. I have a very good friend who lives in Minnesota. I will try and continue exercising. I know it does benefit you health-wise; it's just a mental thing to get motivated.

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I'll think of you while I'm on my treadmill here in Virginia!

Bring on those endorphins!

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nohrt4me | @nohrt4me | Feb 11 8:45am
In reply to @1pearl "Hi nohrt4me, Just today, I received my bone marrow results in just nine days and message..." + (show)
@1pearl

Hi nohrt4me,
Just today, I received my bone marrow results in just nine days and message from my O/H that now she thinks I may have PMF and not ET and maybe I should see a bone marrow transplant specialist after she gets my “risk assessment” results whatever those are. Such a big change in just one month and so little conflicting data on me! I know I need a second opinion for sure, but do not know how to get a reputable one since I chose a Kaiser Senior Advantage Plan when I just turned 65 and seemed fine which I still do! I just have strange conflicting data when docs check me.
Thanks for listening.

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Getting to the bottom of these things is a process, and everything about MPNs seems to unfold in slow motion, unlike with acute cancers. MF or PMF might explain that 400 point drop in platelets? Hoping your hematologist can set you up with an MPN specialist.

REPLY
kapow | @kapow | Feb 11 10:35am
In reply to @lynnebgraham "The walk was good, a bit tiring, but worth it. I live in Tasmania; it was..." + (show)
@lynnebgraham

The walk was good, a bit tiring, but worth it. I live in Tasmania; it was about 25c here. Today is a lot cooler. I have now set up my treadmill so I can walk and read at the same time. I enjoy reading to pass the time. I have a very good friend who lives in Minnesota. I will try and continue exercising. I know it does benefit you health-wise; it's just a mental thing to get motivated.

Jump to this post

I have a hard time getting motivated to go for a walk these days. The temperature here in Fredericton in New Brunswick, Canada has been -20's C(Celsius) recently, but today is a balmy -10C (feels like -15C) so I may get dressed warmly and head out....you have given me the will to go. Plus my bloodwork yesterday showed an improvement in my platelets...down from 610 last month to 460 this month.

REPLY
2 replies
lynn22 | @lynn22 | Feb 11 12:43pm
In reply to @kapow "I have a hard time getting motivated to go for a walk these days. The temperature..." + (show)
@kapow

I have a hard time getting motivated to go for a walk these days. The temperature here in Fredericton in New Brunswick, Canada has been -20's C(Celsius) recently, but today is a balmy -10C (feels like -15C) so I may get dressed warmly and head out....you have given me the will to go. Plus my bloodwork yesterday showed an improvement in my platelets...down from 610 last month to 460 this month.

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Oh my, I could not cope with those temperatures. I have been moaning about the cold weather in the UK being only 5 degrees. I have spent the last 3 months in Spain where the coldest day was 14 degrees but mostly 18 to 24. I have to say I felt so much better in Spain being able to be outside in the warmth of the sun most of the day where I walking a lot more. Enjoy your walk.

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kapow | @kapow | Feb 11 1:58pm

I am not a fan of the cold either, but it was actually nice this afternoon. The temp had risen to -4 before I went out, and I managed about 45 minutes. I just hate having to wear boots and coats, hats and mitts, but once started it is not so bad. I feel invigorated now. That said, given my druthers, I'd rather be in Spain! (or somewhere else warmer) LOL But....summer will come.

I think we all need the vitamin D from sunshine, even in the winter. Makes our ET journey easier to cope with, cause I don't know about you, but I find with winter that a little depression sets in, and I think that hydroxyurea exacerbates that feeling just a bit.

REPLY
lynnebgraham | @lynnebgraham | Feb 11 4:24pm
In reply to @kapow "I have a hard time getting motivated to go for a walk these days. The temperature..." + (show)
@kapow

I have a hard time getting motivated to go for a walk these days. The temperature here in Fredericton in New Brunswick, Canada has been -20's C(Celsius) recently, but today is a balmy -10C (feels like -15C) so I may get dressed warmly and head out....you have given me the will to go. Plus my bloodwork yesterday showed an improvement in my platelets...down from 610 last month to 460 this month.

Jump to this post

Hi @kapow ,
Living in Tasmania, it is very cold in winter, and I love it. Love being able to rug up and have a hot chocolate with a book. The summers can be very hot, we have the cleanest air down here, so you can easily get sunburnt. Which is a worry being on Hydrae. Have you thought about getting a treadmill, would not have to go outside during the coldest days. Yes getting motivated is a daily struggle. See specialist next week, after more blood tests, hopefully platelets are behaving and back to normal. Good yours are imroving.

REPLY
1 reply
nohrt4me | @nohrt4me | Feb 12 9:09am
In reply to @lynnebgraham "Hi @kapow , Living in Tasmania, it is very cold in winter, and I love it...." + (show)
@lynnebgraham

Hi @kapow ,
Living in Tasmania, it is very cold in winter, and I love it. Love being able to rug up and have a hot chocolate with a book. The summers can be very hot, we have the cleanest air down here, so you can easily get sunburnt. Which is a worry being on Hydrae. Have you thought about getting a treadmill, would not have to go outside during the coldest days. Yes getting motivated is a daily struggle. See specialist next week, after more blood tests, hopefully platelets are behaving and back to normal. Good yours are imroving.

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I love the cold, too! Glad to meet another Ice Princess! Winter is usually my high energy period.

REPLY
1pearl | @1pearl | Feb 13 1:02am
In reply to @janemc "You have been through the wringer, 1pearl. I really hope you are getting closer to a..." + (show)
@janemc

You have been through the wringer, 1pearl.

I really hope you are getting closer to a diagnosis and a doctor who knows what she/he is doing.

We're here for you.

Jump to this post

Hi jane mc,
Thank you for your concern. My situation is frustrating. Fortunately I feel just fine like I always have. 😊 We had rain today here which we need, but it cleared up by evening so my family got to do our usual one mile walk before dinner.
I guess I made the mistake of even going in as a new patient and asking questions. Strangely enough, the O/H I have sent a message about wanting to schedule an appointment when she had chromosomal analysis to assess risk stratification which she hoped would be by 2/18, but her scheduler tried to make appointment for me five days earlier. When I questioned why would they schedule me before all results were in, I was told they had no appointments available until almost when I have one already with her at the beginning of April! So I just kept that April appointment. It is what it is, not what I would consider positive patient care.

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