Polycythemia Vera: Just been diagnosed

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?

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!

Good morning, @momoffivetoo. I laughed out loud reading your reply this morning. You and I could be friends…I often have my head stuck in published medical papers, books, journals, too. Never know what information we might need down the road, right?😂 We might be great at trivia parties, and have friends asking us for advice, but we still need to let the diagnosing up to our doctors. (With our help! 😂)

Actually, having that sense of curiosity and level of undertanding can really cement the patient/doctor relationship. By being engaged in the conversation rather than sitting there non reactive can make such a difference in the rapport. The conversations with my hemo/ocol and my transplant doctor/team are more like we’re colleagues. My GP, not so much, he gets prickly when it sounds like I know what I’m talking about. LOL He gets one more chance and then I’m moving on. Anyway, I think learning as much as you can about a diagnosis is golden. Your hematologist visit will be informative.
Don’t hesitate to ask your questions. Being a mom of five I suspect your organizational skills are top notch. (I’m envious, being mother of 1 with epic failure to inherit my mom’s organized lifestyle). Anyway, toss in a notebook with your questions to help keep from veering off topic. We get precious little time with our doctors so make the minutes count.
I’m like the nosy aunt, so let me know how your appt goes, ok?

Hello @momoffivetoo. I’m 77 now and was diagnosed with PV in 1/2020. It was discovered by “accident” during a routine check and my complaint of severe knee pain. The blood work showed elevated hematocrit, amongst other things. My GP sent me for a blood test and it was confirmed when they found I had JAK2 mutation. He told me to find a hematologist asap in my new home state.
I had just moved resident states so I found a hematologist but after what I considered less than appropriate interest in making me understand exactly what the condition is and how it would be treated, and what the long term would be like, I found a great hematologist at Mayo who put me on appropriate dose of Hydroxyurea and phlebotomy. She listened to me, answered my long list of questions and treated me like I had the intelligence to understand what she was explaining.
I was also diagnosed with gout! (The knee and some toe pain) And, I’ve been on allopurinol which has put that under control.
I’ve discovered that as soon as my hematocrit reaches 42 I feel it in my legs and ask for a blood draw and then, as necessary, phlebotomy.
After these 7 years I’m down to routine blood draws every 3 months (from monthly).
As suggested by my doctor, I take the Hydroxyurea at night and just before bed to minimize any side effects.
Early on an abdominal ultrasound was ordered to assess any problems with spleen. It sounds like you should ask about getting one done.
Itching really hasn’t been a big problem for me. I have lost some hair, but then I’m in my 70’s and unwilling to think it is as likely to be age related as the result of the Hydroxyurea.
Last month my new GP discovered my thyroid level was very low despite my having been OK with med for years, so meds are being adjusted. And my triglycerides elevated (for the first time ever that Im aware of).
Like you I’m on the same journey to lose weight and have lost about 60 lbs over the last 3 years. So, congratulations because that’s been a problem for me since my 20’s.
I don’t think you’re “jumping the gun”. I think your GP should have sent you for the genetic test early on but done is done. I am surprised that no one at the donation center did not discover the higher than normal levels and reject you as a donor. Im told the blood they draw from me has to be tossed.
I urge you to find a hematologist who will listen to you, answer your questions and tests you, not just the condition. When I first complained of pain in my legs and my hematocrit level was very low”only” at 42.1, a nurse told me I shouldn’t have a problem at that level! Well, I did and after speaking with doctor, she ordered the phlebotomy.
You know how you feel no matter what anyone else says or what “standard” requiring phlebotomy is.
My biggest complaint at the start and throughout has been fatigue.
This is the first time I’ve shared on this forum but I thought I could help you with my experience. I hope so and I have a tendency to listen to doctors and then breakdown what I’ve been told to basic terms so sorry if I’m not as technically “spoken” as some.

I definitely know the diagnosis will be up to the doc, but I like to go in with enough information to ask GOOD questions! 😊. I’ve already started a list of questions, and I DID ask my gp to run the gene test. He said it’s outside his knowledge to order the test, so I told him I absolutely respect that. I also told him I appreciate him doing the consult with the oncologist, and getting me the much needed referral!

Anyway, yes, I try to be organized. I am already getting my medical records together with my bloodwork results from the last few years so they can get a clear picture. Calling my insurance company to ask about copays for various services as well. I want to reduce the number of surprises if at all possible.

I’ll post what the doc says in a few weeks after I see her. Thanks again for the communication and support!

Thank you so very much! I haven’t actually donated blood yet. It was thrown out as kind of an off handed comment, so I didn’t think it was really all that necessary.

At this point, I’ve realized the pain I’ve had in my toes these last few months probably wasn’t arthritis like I assumed, and the itching when I get in the tub isn’t normal either. I am compiling a list of all the weird things I’m experiencing so I can see if there’s anything that can help.

I had a radical hysterectomy two years ago as well, so I’ve attributed a lot of symptoms to surgical menopause. I’ve been losing a ton of hair as well, so my list of strange things is growing. 🤣

I’m really hoping that treatment will help my fatigue. I always push through and assume I’ll never feel better because of the lupus, but I’m excited to think I might start to feel better!

Thank you again for your communication - it makes me feel better to know I’m not crazy in thinking this is what’s going on. I don’t want this disease, but I DO want validation because I knew something was wrong. I’ve been saying it to my husband for a long time.

Hello. Please trust what you are feeling. No one else knows you like you!
And, get an order for a blood test to determine if you have the JAK 2. Your GP can order that.
I consider myself lucky that of all the diseases and conditions that could have afflicted me as I got older, I have PV. That may sound odd but, so far, I take two capsules a day of Hydroxyurea and have a phlebotomy every two or three months. I take a low dose aspirin to help prevent blood clots. I get tired and have to pace myself but compared to so many people suffering from catastrophic illness, disease, Im OK. I was scared at the beginning because of the unknown but that’s expected. Google has its place but as I’ve said to a lot of people, a little knowledge is a dangerous thing.
You sound like a smart woman who has gone through a lot and come through it. This is just another challenge and with the right medical team you will get through it just fine.

I tried to get my gp to order it, but he said it’s outside his scope and I have to wait for the hematologist to order it. 😩

I’ll be honest - I have thought the same thing. I’m scared, but I have confidence that the doctors will give me proper care and get me through this! I lost my sister a few years ago to endometrial cancer; she died just 11 months after diagnosis (she was 46). It was a quick and painful death, so if I do have PV, I’m grateful it’s not something much worse. My husband of 30 years has said he’s not going anywhere, and we will get through every stop of this together!

Thank you again for your candid conversation!

First, Im sorry for your loss. Second, thank God for your husband.
Now, and I will not pursue this with you again but, it takes NO expertise to order a blood draw and request you be tested for the JAK 2. It’s an ordinary blood draw. The result is either positive or negative and then a referral to specialist.
Maybe it’s the health care system you’re in but otherwise, what I’ve described is all it takes. In fact, I think if you contact an independent lab like Quest, you may be able to order it yourself.
You have pain and you’re scared and if you have PV there’s no reason to wait any longer than you have to begin treatment.
I’m sorry but I’ve heard too many stories that would have ended differently if reasonable action had been taken earlier.
If I have overstepped, I apologize.