Polycythemia Vera: Just been diagnosed

I think we know our bodies better than the docs do sometimes. I've been struggling to get a consistent diagnosis as well. I have all the symptoms of PV but my current doc disagrees. My former doc said I have secondary PV but he's moved away so I don't see him anymore.
Hang in there and don't give up.

Hi all.

I am in the process of being diagnosed with an MPN. The doctor hasn't said for sure what type, but from my research it can only be PV. My medical background is sort of fitting the picture. 4 PEs 8 years ago. Totally unprovoked. Gout out of nowhere. Now my toe that had gout aches on a regular basis. I have extreme fatigue. Headaches ( I do have a headache syndrome but it has been under control for years). Pins and needles in my hands and feet. Did I mention extreme fatigue cuz that is a biggie for me. And the thing that started the process is dizziness and weakness.

Over a year ago I ended up in the ED for the dizziness. They told me I was dehydrated, my h/h was up. I pointed out that my urine showed I was not dehydrated at all. So they told me I was overhydrated and sent me home. My PCP told me the exact same thing. Desipite it never getting better.

Late last year I was finally sent to a heme/onc and he diagnosed Iron deficincy without anemia. I was to get an iron infusion. Before I could I had a minor procedure that caused more bleeding then they anticipated. So, my blood work looked great. All normal. Then after the iron it went back up. He didn't care then, but this last time he said he was concerned since my h/h has not come down.

I am JAK-2 negative, but he said there wasn't enough testing done. My next lab work isn't until August and I'm a wreck. Part of me is sure I don't have this, I don't have high platelets or WBCs. Actually, my platelets are low normal. They hover on the cutoff all the time.

I am on xeralto from the blood clots and will be for life. I wonder if that has been a good thing and kept me from being sicker since my blood is thinned out. I can't take aspirin because I also had a bleeding ulcer that almost killed me about 3 years ago.

Sorry this was so long. I am not sure what I'm looking for here. Maybe reassurance one way or the other. It has been good reading what everyone else has to say.

Yes, that’s exactly what I did. For two years, I had uncontrollable itching and no other symptoms, even my blood was at a good level but after going to dermatologist and doing research I found polycythemia vera. I wrote it on a piece of paper and took it in to my doctor and she said yes, I do think you have it because at that point my blood counts were up she did the Jack 2 test and sent me to an oncologist hematologist. so glad I continue to research

Hi Wendy, it’s my pleasure to help any way I can. Going through my leukemia and bone marrow transplant journey, I didn’t know a thing about that cancer or the transplant, nor anyone who had gone through either of those.
Fortunately I had amazing medical teams for both and learned a great deal, especially from my transplant team at Mayo-Rochester. But no matter how much they told me that I would feel better in a few months it was hard to fathom a positive future. Until about 2 months after my transplant, I was in the lab waiting to be called for blood work. I met 2 people in waiting room…a woman 2 years post and a gentleman right next to her who was 5 years post transplant. We talked at length and I was so inspired and encouraged to see what would be possible for me! I learned the value of a mentor…they gave me hope. ☺️ That’s why I’m here.
You obviously have that all important spirit of endurance. That keeps you moving forward and adapting to your newly diagnosed condition. I think you’re finding out that you need to listen to your body. If you’re tired, you need rest. I know how hard that is when you’re a ‘mover and a shaker’!! I’m the same way. Resting? What’s that? 😅

Thank you for sharing your story! Wow, you were quite the little daredevil. Makes for awesome stories and memories but hard on the body. It’s really inspiring to hear that you keep right on pushing yourself in spite of all the discomfort. I also hope your gut issues get back under control. Do you know what prompted the first case of SIBO? Were you on antibiotics?

Back to the PV…sorry this is getting longer than I intended.
From my limited understanding, there are several subtypes of PV. If you’re not JAK2 positive there you can still have high hemoglobin and hematocrit levels with primary PV. It isn’t always the JAK2 mutation.

There is also secondary PV which is caused by an underlying condition where, basically, the body is being deprived of oxygen for some reason, such as sleep apnea for example. That can cause the kidneys to call for more red blood cell production to increase the oxygen level. It’s driven by a hormone in the blood called erythropoietin (EPO). One way to discern the difference, in secondary polycythemia, your EPO level will be high and you’ll have a high red blood cell count. In primary polycythemia, your red blood cell count will be high, but you’ll have a low level of erythropoietin (EPO)
A little heavy reading:
https://www.hematologyandoncology.net/archives/january-2019/diagnosing-or-ruling-out-polycythemia-vera-in-patients-with-erythrocytosis/

You may have seen this article before:
https://www.healthline.com/health/secondary-polycythemia#causes

Do you remember seeing an EPO reading in your blood work?

Hi Lori, thanks for all your amazing support and information. My family is finding the articles very helpful as well.
I am not Jak2 positive but the oncologist said I have PV and won't likely need a bone marrow biopsy for a couple/few years. I'll get the ultrasound of my spleen for a baseline, I'm not a large person and he said there would be a bulge if it were enlarged with my size and I have no pain there. I'll get a brain & lung scan at some point for a baseline with the fact I've had bad headaches my entire life, often due to allergies/sinus. The more recent past few years have been different, not the same location and stabbing intense pain so just to be sure nothing else is going on or to see if I've ever had a bleed. I've been in major car accident with internal bleeding (my spleen but it stopped after a few days, more like a leak) and have had falls of 25+ ft with broken bones etc. I was rather active and a bit daredevil as a kid, my back is paying for it with a complete degenerated disc but keep it in check with keeping in shape. That has been harder lately with the SIBO last year and then the PV creeping up on me.
Sorry for novel, wanted to give some background.
If I'm not Jak2 positive could that mean it may not be PV but could be something else?
My lungs are sensitive and I get pneumonia easily but always when I run myself into the ground and didn't rest when quite sick.
Is there a good article that explains if you're Jak2 negative, I can still have PV with my hemoglobin & hemocrit levels?
Thank you for your help & support!

You may find with treatment you’ll have fewer symptoms. Having too many red blood cells (high hematocrit, high hemoglobin) can elicit some of those symptoms you’re talking about.
Since PV develops slowly you may have had this for several years.
Did you already have the blood work and now you’re just waiting to see about any mutations?
What were your hematocrit and hemoglobin numbers?

Ha! Has anyone walked into the Dr. and said, "hey, I think I have this?". So, to answer your question about symptoms - a lot of pain (but chalked it up to being old). a lot of exhaustion (but chalked it up to high demanding job/life), and some memory issues - but chalked it up to all of the above. Since the age of 26 I've experienced panic attacks which typically started from a heart palpitation or feeling dizzy - always chalked this to anxiety. I still have much to find out about this, and despite anything I read, my goal is to keep my life exactly as it is now (maybe less memory problems, dizziness, exhaustion, and joint pain) for as long as I possibly can, From that, come what may.

Welcome to Mayo Connect, @ausableriver I’m happy you found us and decided to bypass Dr Google. While there are worthwhile information sources some of those sites lead down rabbit holes filled with needless stress and anxiety.

You were recently diagnosed with Polycytmenia Vera. While it is classified as a type of blood cancer it is often very slow to progress and generally controlled through phlebotomies (having blood drawn to reduce the volume of red blood) and when needed, there are medications to help keep things in check.

Primary PV is caused by an acquired mutation which can happen randomly. It’s most frequently the mutation of the JAK2 gene. When that happens the defect can cause uncontrolled cell production as in PV where the red blood cells in overdrive.

https://www.healthline.com/health/polycythemia-vera
~~
Secondary Polycythemia doesn’t involve a mutation but the cause can be from an underlying condition such as kidney, lung or coronary problems, sleep apnea, some medications.
https://www.healthline.com/health/secondary-polycythemia

There is an active support group for members with PV. I’ve posted the link below where you can meet members @pmm, @robinll @nypara66 @learnandlive @itsmepeggysue @new2this @seamus1010 @csgreetings and many more.
https://connect.mayoclinic.org/discussion/polycythemia-vera-1/

Were you having symptoms which led to your diagnosis or was this a random find during a blood test?

New here. Being tested for primary vs secondary polycythemia Vera. Trying to stay away from Google - I saw hematologist last Friday. Trying to determine if it is primary or secondary. Not much out there about this, I never heard of it prior and wondering about the ability to maintain a normal life. I work a very demanding sedentary job that I love. Where can I find information about prognosis and treatment? Is this going to consume my life as I know it?

I agree with these comments. Your #’s are not that much out of whack especially considering how much they came down after increasing your water consumption.
I’m betting a lot of the reason for your #’s and symptoms is related to dehydration. Stay on top of that day and night- even if it causes you to need to pee a lot more. Do that all the way till your July visit. And let us know how that goes. Best of luck.