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Essential Thrombocythemia: Looking for information and support
Blood Cancers & Disorders | Last Active: Nov 4 11:06am | Replies (597)Comment receiving replies
I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight and was wondering how I can just follow discussions on ET without looking at all the blood disorders.
my doctor prescribed hydrea. I opted to wait, and have been taking a low dose aspirin nightly . My platelets have been in the 500s. I was in Florida when I received the diagnosis so I haven’t been back to see my doctor. My next blood work is next week and my appointment is the first week of May.
I have been doing research regarding using vitamin D to reduce platelet count. I’m going to talk to him about it because I don’t want to go on a medication unless absolutely necessary.. if someone can add me to this thread I would appreciate it.
Replies to "I was diagnosed in January with jak 2 mutation and ET. I’m new to this sight..."
Welcome @christinele. You can choose to follow only discussions related to ET and JAK 2. Here's how:
1. Select a discussion of interest to you. For example https://connect.mayoclinic.org/discussion/essential-thrombocythemia-1/
2. Click the bell icon in the bottom right of the first message.
3. Select "Send me an email and on-site notifications".
4. Click "Save Setting".
If you are receiving notifications for discussions you are not interested in, Select "Mute this discussion. Do not notify me."
My functional medicine doc has me taking 10,000 IU Vit D daily to keep my levels between 55-90. I live in Michigan, and while I try and get outside daily, I am fair skinned of Northern European descent, and otherwise my vitamin D tanks very low. Talk to your doc and get tested. Vit D us related to so many processes, but as someone else said, it is not necessarily related to ET w/JAK2.
Christinele,
There are also a lot of ET JAK2 discussions on healthunlocked.com. It originates in the United Kingdom but people around the world participate. You can also type in your interest and it will come up with older posts.
Best wishes, Eileen
I was diagnosed in December of this past year. Same thing, Jak2 mutation. I tried some alternative things too, but nothing helped. I reluctantly went on 500 mgs of HU 3 x a week and have been fortunate. I've had no negative side effects and my platelets are now in the normal range. If you really need the meds take them. You don't want a stoke or heart attack. Actually your numbers aren't that high, mine were in the upper 600's. My doctor tracked my platelet count for 6 months and it continued to go up. Good luck!
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See what your report comes next week then take a call. Regarding vitamin D, try this too , coming out in sun during first hour of sunrise and hour before sunset when sun colour is orange and easily one can see it , preferably in white cotton clothes for sun rays to enter your skin. But in first hour as it may harm too, if sun very bright. Sun rays too has miracle benefits . , at right time .