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Polycythemia Vera: Just been diagnosed
Blood Cancers & Disorders | Last Active: Apr 13 1:55pm | Replies (427)Comment receiving replies
Hello, I am new here but wanted to ask a few questions. I am waiting on my hematology appointment in 4 weeks, but I feel pretty confident in a PV diagnosis. I have had high RBC, hemoglobin, and hematocrit for 7 years now. No one has done further follow up on this, I’m always just told to donate blood.
I started to get concerned, and brought it up to my gp at my physical a week and a half ago. I have lost 50 lbs, and do weight lifting and cardio 5 days a week, yet my bp is staying a little high, and my cholesterol went up as well (triglycerides dropped in half). Odd.
Anyway, my bloodwork came back still high, hematocrit is 51.3, hemoglobin is 16.6. Now another value EOS absolute is also high at 8.6%.
Doc did an e-consult with oncology, and they want me to come in. After researching this all on my own, I’m assuming PV. Reached out to my aunt who confirmed my great uncle and second cousin both had PV!
I have itching, toe pain (all toes, both feet), upper left abdomen pain (intermittent), joint aches, occasional headaches, my first bloody nose in 20 years as well.
What sort of questions should I ask at this appointment? Am I jumping the gun here, and being ridiculous, or is PV pretty likely? I am a 47 yo female with systemic lupus as well (diagnosed at 31).
Any help/guidance would be SO appreciated! Thank you!
Replies to "Hello, I am new here but wanted to ask a few questions. I am waiting on..."
Good morning! I wish we could have a cup of coffee together. Your post sounds familiar to my experience. I am mom to 5 kids as well. Diagnosed with PV 2 years ago at age 47 after several years of my labs being "off" and having a migraine aura but no headache for several months. I was told it was perimenopause, stress, migraine headache, etc. I also had a horrendous itchy rash on my chin. My dentist suggested I switch toothpaste, and a dermatologist suggested I start a steroid cream to stop the itchiness and rash. None of these remedies worked. Thankfully, my incredibly kind and thorough endocrinologist in Charleston did a little digging and suggested I get tested for the JAK 2 mutation. Blood tests, JAK 2 mutation, and a bone marrow biopsy indicated PV. I went to Mayo in Jacksonville and had a great appointment with a very knowledgeable doctor. He helped put my mind at ease. I then found a doctor closer to home who specializes in blood cancer. I started on hydroxy urea then switched to Jakafi after 6 months. Jakafi was good at lowering night sweats and itchy face, but I found it affected the absorption of my thyroid meds (I do not have a thyroid). I found myself pretty depressed and anxious. I have recently switched back to Hydroxyurea and my thyroid numbers are looking much better. All this to say, I can definitely relate to you. I have learned that not all doctors really know about polycythemia vera. Mayo certainly does, and you can do a search for a mpn specialists to find a doctor who knows the disease and is close to your location. Also, this message board is super helpful, and the mentors are amazing - a real blessing!
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Welcome @momoffivetoo. As a mom of five, you’ve no doubt fine-tuned your mother’s intuition and diagnostic skills over the years. I see you’re using those skills on yourself! 😁
You’re not being ridiculous at all in asking questions and trying to learn as much as you can about your elevated hematocrit and hemoglobin. From my understanding of PV, you are ticking off all the boxes in the list of symptoms but confirmation can only be done with a visit to your hematologist.
I’d post some more informative links for you, but I think you’ve covered most of them in your research. 😁
Some questions you could ask:
~What tests do I need?
Dr may want more blood work to test for a genetic mutation that may be driving the elevated red blood production. They may also request a bone marrow biopsy.
~What treatments are available, and which do you recommend?
~I have other health conditions. How can I best manage them together?
~Will I need follow-up visits? If so, how often?
You’re really being proactive with your health to lose 50 pounds and adding some impressive exercise routines. Good for you! That’s not easy, but certainly is important in overall health!
I expect other members who have PV will be popping into the conversation to offer support. Don’t hesitate to ask questions here! When is your appointment?