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Diagnosed with PV: Anyone used a home hemoglobin testing kit?

Blood Cancers & Disorders | Last Active: Jun 17, 2023 | Replies (25)
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@leann1

Hi Lori! I purchased the Bioaid Hemoglobin Testing System on Amazon. It was 82.00. It resembles a glucose testing kit. It also gives you your HCT. It seems to be pretty accurate, I just received it last week. I wanted to be able to check my levels myself. I’ve been doing a test, I take my count then drink a lot of water. I can get my counts a couple hours later. Counts go down a couple points. I have been diagnosed with Polycythemia Vera this month.

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Replies to "Hi Lori! I purchased the Bioaid Hemoglobin Testing System on Amazon. It was 82.00. It resembles..."
Lori, Volunteer Mentor | @loribmt | Jun 14, 2023

Hi @leanne1 Thank you so much for sharing your hemoglobin tester info with us! There are so many products on the market and trying to find one that’s accurate and reliable is always risky. You’ve done the legwork for us. ☺️
I’m going to tag fellow members, @wendy517 @megg @jp85 and @jerrlin who have been wanting to find a good way to check their hemoglobin and hematocrit at home!
@leanne1 comment regarding the tester is: https://connect.mayoclinic.org/comment/878178/

Were you having symptoms prior to being diagnosed or was this found during a routine physical? Do you know if you have the JAK2 gene mutation?

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wendy517 | @wendy517 | Jun 15, 2023

Lots of water every day is key to good health all around, being dehydrated raises your hemoglobin levels as well. Something that us with PV absolutely don't want. I was just diagnosed in April, trying to go one month between phlebotomies 🤞
Fatigue still gets to me, I can work every other day and not full days yet, it's quite frustrating since I started my own business shortly before I was diagnosed. I may have to look into some type of short term disability. I'm typically a very active 60 year old, traveling, going out for fun & networking events etc. I don't do well resting so much 😞
Stay strong my warrior 💪 friends!

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