Essential Thrombocytosis symptoms

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.

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.

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.

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.

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

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 !

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 !

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

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 .

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.