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!
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!
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?
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?
Thank you so much for the reply! Yes, I definitely like to research. I look at published medical papers a lot, and I do feel pretty confident this is what is going on. I’ve been considering calling my gp to ask if they can just order the test for the gene mutation so it’s ready to go! 🤣
My appointment isn’t until April 30, so I have over three weeks to go. I’m on a waiting list for a sooner appointment, but I’m not expecting to get in sooner.
This all has my mind racing because I deal with so many other things I’ve just always attributed to lupus. Now I’m wondering if PV has been the issue instead. I guess we will see!
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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!
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Helpful -
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1 ReactionWelcome @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?
-
Like -
Helpful -
Hug
1 ReactionThank you so much for the reply! Yes, I definitely like to research. I look at published medical papers a lot, and I do feel pretty confident this is what is going on. I’ve been considering calling my gp to ask if they can just order the test for the gene mutation so it’s ready to go! 🤣
My appointment isn’t until April 30, so I have over three weeks to go. I’m on a waiting list for a sooner appointment, but I’m not expecting to get in sooner.
This all has my mind racing because I deal with so many other things I’ve just always attributed to lupus. Now I’m wondering if PV has been the issue instead. I guess we will see!