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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 | Jan 31 4:16pm
In reply to @1pearl "Hi jane mc, Thanks for your post. Please list the website you found that information on..." + (show)
@1pearl

Hi jane mc,
Thanks for your post. Please list the website you found that information on as it sounds very interesting. I do agree the doctors have limited knowledge about us. I have never smoked and know that is terrible for health. I eat healthy foods already and do Mediterranean diet. I plan to keep on living my active busy life well like I always have and learning as much as I can about what I have.
Enjoy your day!

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I found it online. It's an open access article in Volume 67 (January 2024) of the Lancet.

Title:
"Development and validation of a model for the early prediction of progression from essential thrombocythemia to post-essential thrombocythemia myelofibrosis: a multicentre retrospective study"

Authors:
Danhong Xianga, ∙ Xiudi Yanga, ∙ Honglan Qian, ∙ Li Zhang ∙ Yanxia Han ∙ Yongcheng Sun∙ et al.

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1pearl | @1pearl | Jan 31 10:37pm

Hi all,
Got the results from my MRI on finger joint and still they don’t know why, but did state could be inflammatory component which might explain some of my elevate platelet issues. I am glad I am getting bone marrow biopsy and MRI seems to indicate that one of my swollen finger joint might be appropriate too. I am not sure if they do it in such a small joint, but as with all this, it will be a learning curve for me. I am still blessed to feel perfectly fine and now have normal BP readings with new approve monitor of sometime 99/55 and sometime 115/78 which are perfectly normal. I am so glad I finally met a good doctor in person in the urgent care a week ago who actually evealiatws me in person and my case. I am no rush to do anything until my case becomes a lot more clear to me and the O/H and rheumatologist. I really do not appreciate being thrown drugs to try in case I might have something. That is just not my style as I do not take any prescribed meds and have not for at least twenty years plus. Hydrea just doesn’t seem like a good thing in 2025 as it is such an old drug from the 1950s and doesn’t cure but just lowers platelets. My genetic testing determined no am low risk for thrombosis also.
Thanks for listening and everyone’s input.

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1 reply
1pearl | @1pearl | Feb 2 4:16pm
In reply to @nohrt4me "Welcome to the CALR club. Me, too. Good news with CALR is that we don't have..." + (show)
@nohrt4me

Welcome to the CALR club. Me, too. Good news with CALR is that we don't have as many clotting incidents as people with JAK2. CALR patients also cannot progress to polycythemia vera.

But less is known about this mutation and how it affects overall health and longevity.

Hoping you can get some answers about the enlarged joints. Glad that is not painful for you.

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Hi again nohrt4me,

I know you and I both are CALR positive, but did you get any other mutations listed on your genetic testing? I have two others that are concerning as percentage still in the 40s. My CALR is 49%. So you know exactly what this all means?

Hope you are enjoying your weekend.

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1 reply
lynnebgraham | @lynnebgraham | Feb 2 5:33pm
In reply to @nohrt4me "Welcome to the CALR club. Me, too. Good news with CALR is that we don't have..." + (show)
@nohrt4me

Welcome to the CALR club. Me, too. Good news with CALR is that we don't have as many clotting incidents as people with JAK2. CALR patients also cannot progress to polycythemia vera.

But less is known about this mutation and how it affects overall health and longevity.

Hoping you can get some answers about the enlarged joints. Glad that is not painful for you.

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Neither my GP or hematologists mentioned ET was a very rare blood cancer. Only found this out by googling it. I have had it for over 16 years, would have thought someone would have mentioned this fact. Neither has mentioned a mutation of JAG2 or CALR. I feel I have been left out in the dark maybe because it has been under control for all this time with Agralyn. Have prior to Christmas had my first bone marrow test to confirm ET. Now on a different path with Hydrae, this seems to be okay 1 tablet a day with 1 asprin. Just waiting for blood tests, was 1155 then 735 so it is going down. Only side affect is very tired, otherwise all good.

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4 replies
etandme0983 | @etandme0983 | Feb 2 6:25pm
In reply to @lynnebgraham "Neither my GP or hematologists mentioned ET was a very rare blood cancer. Only found this..." + (show)
@lynnebgraham

Neither my GP or hematologists mentioned ET was a very rare blood cancer. Only found this out by googling it. I have had it for over 16 years, would have thought someone would have mentioned this fact. Neither has mentioned a mutation of JAG2 or CALR. I feel I have been left out in the dark maybe because it has been under control for all this time with Agralyn. Have prior to Christmas had my first bone marrow test to confirm ET. Now on a different path with Hydrae, this seems to be okay 1 tablet a day with 1 asprin. Just waiting for blood tests, was 1155 then 735 so it is going down. Only side affect is very tired, otherwise all good.

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It is so sad that some Hemotolists / Oncologists have no respect for their patients . I kept seeing my platelets rise after having regular blood panels and finally I suggested I should be seen by a specialist . The worst Oncologist/Hematologist ever licensed . I had done my homework and after DNA Threading and numerous appts spread out over months , I had to also ask this if this was cancer , how rare it was and what Hydroxurea was . I knew I had to be my own advocate and after my Bone marrow Biopsy( my Oncologist never even called to check on me ) , it was obvious I needed a Dr that was a lot more empathetic and knowledgeable , so I researched my ET and am now seeing a wonderful Oncologist. I know I have to be on Hydyoxurea for the rest of my life ; my platelets are 620 and my new Dr is trying to get them down to 400. Strokes run in my family and This cancer is very very rare ( .01 % of the population has it ) . It is not genetic , but they are still doing research to see if it somehow has been linked to family members .
You have to be YOUR OWN ADVOCATE! . Do not be afraid to question Doctors , and change Dr’s if you don’t feel good about your medical care ! Your life depends on it ! Good luck

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1 reply
etandme0983 | @etandme0983 | Feb 2 6:36pm
In reply to @micheletx "In 2004, I was diagnosed with Essential Thrombocythemia (ET) at the age of 32. This diagnosis..." + (show)
@micheletx

In 2004, I was diagnosed with Essential Thrombocythemia (ET) at the age of 32. This diagnosis came after being referred to an oncologist/hematologist due to a high platelet count. At that time, I was informed there was no cure for ET, and the only available medications carried a risk of potentially leading to leukemia. My platelet count was notably high at 1000.

Given the lack of effective treatment options and the associated risks, I decided to manage my condition without medication. Fast forward 21 years, and my current physician reached out regarding my recent bloodwork. She indicated that my platelet count was elevated, it was now at 517. I found this improvement encouraging, especially considering my earlier count exceeded 1000.

After discussing my results with my doctor, I expressed an interest in researching natural remedies for reducing platelet levels rather than consulting an oncologist at this time.

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I am impressed that you not only took your diagnosis when you were in your 30’s and have managed to live this long . I am 69 , just got Diagnosed and was told it’s an “old persons disease “ and I have 15 - 20 yrs . Now you have the platelets down and you are again trying to manage it on your own . I strongly advise ( I am not a dr) that you begin taking medication as the platelets are thickening in your bone marrow and could cause thrombosis and stroke . Good luck !

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etandme0983 | @etandme0983 | Feb 2 6:53pm
In reply to @clickpaw "Hello and thank you for reaching out, I live in Canada and no my hematologist has..." + (show)
@clickpaw

Hello and thank you for reaching out, I live in Canada and no my hematologist has not done any tests. I was diagnosed back in 2019 but all he told me was my platelets are high and did I want to take meds for it, he did not tell me the seriousness of it, then my family DR sent me back to him in September 2024, that is when I started looking into what it was, and what hydroxyurea was, I do not want to take it. I live within 8 miles of a nucurlar plant. My platelets where 807 in September and with diet I got them down to 749 in early November, all I eat is oatmeal, brown rice, fish, dark chocolate, ginger, mushrooms, onion, garlic, berrys, whine, coffee and rasins. January 15 they where 739, they diden't go down much because i started drinking lactose free milk, creamchees, and cream. I am only 95 pounds, so i need more food.

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Unfortunately, if you haven’t had DNA testing and aren’t on Hydroxurea or some other medication to lower your platelet count , I wonder if your special diet will help . ET is a gene mutation that attacks your platelets and overproduces them , sometimes causing Thrombosis , and at worse , strokes . After DNA testing and a bone marrow biopsy , my Oncologist told me diets nor any other underlying medical issues and nothing I could have done , caused the ET . I started having symptoms last summer after seeing my platelets moving slowly up . I had extreme fatigue, mouth sores , migraines , UTI’s . I was reluctant to take a chemo drug ( Hydroxurea) , but with the excellent advise from my new Hemo:Oncol, my symptoms have subsided and I have had no side effects so far . Please make sure you explore all avenues before you have all the information on this cancer . Good luck !

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etandme0983 | @etandme0983 | Feb 2 7:00pm
In reply to @lyno29 "Bloodwork results. Platelets remained around the same from a year ago when I started on the..." + (show)
@lyno29

Bloodwork results. Platelets remained around the same from a year ago when I started on the homeopathic Arnica.. Cholesterol is down. Dr just warned me to watch for blood marrow scaring.

Sent from Yahoo Mail for iPhone

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Please don’t settle ! This cancer is extremely rare and you need to find a Hematologist/Oncologist that is familiar with its cause and your specific medical history . Don’t settle ! It won’t go away

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1 reply
etandme0983 | @etandme0983 | Feb 2 7:16pm
In reply to @healedbytheblood0119 "Hi, Thanks for your input. I have JAK2 mutation too, just found out in April. How..." + (show)
@healedbytheblood0119

Hi,
Thanks for your input.
I have JAK2 mutation too, just found out in April.

How do we know if baby aspirin will help?
Do you take cinnamon capsules? How does Reservatrol help, thought that’s raised it.

My Chinese Med Dr said to daily take an herb.
They taste strong, like gingery type peppery something.
Good for all blood stagnation, circulation, alleviate pain, induce resuscitation.
You just swallow it fast with water.

Idk why but Exedrin migraine makes the foot and toe burning and tingling stop.

What do you mean no meat? Like you only eat fish? I read that increases platelets too. Seems many foods whether meats, or vegetables raise the count.

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Please do not rely on Chinese Herbs ( no disrespect )Please find a specialist to determine your Jak2 diagnosis . Is it due to a gene mutation , underlying conditions ? Your life depends on it .

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etandme0983 | @etandme0983 | Feb 2 7:22pm
In reply to @clickpaw "I am also trying to lower my platelets naterally, the diet above tells you to eat..." + (show)
@clickpaw

I am also trying to lower my platelets naterally, the diet above tells you to eat broccoli and leafy greens, but they do not lower platelets it's the opposite. I read that you should not eat gluten or lactose, so i started drinking lactose free milk, it raised my platelets. I amstill working on my diet, I am confused about oranges and grapfriut, can I eat or not.

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What is your diagnosis ? Diet is great , but you need to get to the root of the problem. Please seek advice from someone who specializes in blood disorders . Have blood work , genetic testing to rule out other cancers , and mutations , which could lead to other complications.

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