Hello all, this is my first post and full disclosure I am literally brand new to all things MPN related - before this week I could not have even told you what it stood for and I'm still not sure I could spell it if put on the spot.
I have not been diagnosed but routine labs from my annual physical last week indicated high RBC/HCT/HGB, which they did at the previous year's physical as well. I guess the first time my GP wrote it off as a fluke. Now all of a sudden I'm scheduled for a consult in 3 days with the head of oncology at a large hospital in nearest major city to me. It is a lot to absorb in a short period of time but I am trying to learn as much as I can before my appointment next week.
My first questions are:
Are there any other conditions that cause high RBC besides polycythemia? I know there is primary and secondary and I understand the difference between the two but am curious if there are other, unrelated conditions that may cause the same lab results? I do not really find anything else but again this is very new to me.
My labs do not quite meet the threshold of the WHO defined criteria, my RBC is 5.19, HGB 15.9, and HCT 46.4. I am a 49 yr old female, I know the criteria are different for men vs women. Since I technically am just under the defined thresholds for clinical diagnosis, what happens then? Do I just have to wait until it progresses to the point I hit the benchmarks?? I do have a demonstrated history of most of the other symptoms, if that matters.
Last question for now - I know there will be a myriad of testing done by the hematologist, one of which is likely to be the JAK2 test...how long does it take to get the results of that test?
Thanks in advance for taking the time to read my post and I appreciate any insights or experience anyone is willing to share, I am so appreciative of being able to find this community of people as much of what I've read from you all has given me comfort and hope for a normal life, should I turn out to indeed have an MPN.
I'm sorry I can't answer your questions, I have ET, which is high platelets. If you wait until you have seen the haematologist and get a definite diagnosis you can get more information. You might have to have a Bone Marrow Bioposy but the haematologist should be able to tell you more, there are also leaflets they can give you to take home to read (not all of them do that you may have to ask) I was terriefied when I was diagnosed and even more so whenI read about the drugs that treat the disease, however don't believe everything Dr Google tells you! Twelve years on I live a normal life - well as normal as possible in these strange times! Hope you get some more answers and best wishes for the future x
Soz, I’m also an ‘ET’er so can’t really help with questions on PV either, though would suggest checking the MPNvoice website (if you haven’t already found it) which has loads of info and advice and is the best reputable source. My JAK2+ was diagnosed by blood test (if I remember rightly it took about 2 weeks to come through) - I didn’t have a BMB though your consultant may want one done. I hope your consultation gives you some answers and reassurance (you will see from this wonderful forum there is always someone to help with questions). Anne-Marie.
Your counts are all a little high. In the UK HCT for women is 42 +/- 5 and RBC 48 +/- 10
My JAK2 test was done within 2 weeks of first investigation.
With primary PV your platelets may also be elevated (worth checking) and one of the indicators is an abnormally low EPO reading (also worth checking).
I've been living with PV for six years - treatment is a balancing act and it's well worth insisting that you are given copies of your blood counts every time you're tested. Advocate for yourself and don't let anyone pull the wool over your eyes.
You are actually asking a complicated question, but the short answer is YES there are things other than PV that can cause elevated red blood cell counts (erythrocytosis). You are correct that there is a distinction between a primary PV and erythrocytosis cased by another condition. There is also something called Idiopathic Erythrocytosis.
You likely already know that 95% of people with PV are positive for the JAK2 mutation. That is a normal first step in figuring out what is going on. The hematologist will do a whole panel of blood work to assess what is going on. You should have answers in short order. Length of time for the JAK2 test varies based on where you are, but likely within a week or so.
FYI - I was diagnosed with ET about 30 years ago. It progressed to PV about 7 years ago. Despite being 65, I am being successfully managed with phlebotomy-only. The good news is that if you do have PV, it is a manageable condition. Most of us with PV will live a near-normal lifespan.
When I had ET, primary tx was aspirin-only. When I was initially diagnosed about 30 years ago the doc started me on hydroxyurea, but took me off in about a year when the standard treatment protocol changed to aspirin-only. HU not worth the risks for a low-risk ET case. The ET progressed to PV about 7 years ago. My old hematologist missed the progression and was not treating me correctly. The progression was properly diagnosed in March 2018. I was started back on hydroxyurea which was not adequate. Therapeutic phlebotomy was initiated which did bring the erythrocytosis under control. After about a year on HU, it became clear that I am HU-intolerant as I experienced toxicity at very low doses. The MPN Specialist took me off the HU, saying it was not an appropriate medication to use to treat the PV. The MPN specialist also took me off the aspirin as he stated that over age 60 the risk of hemorrhage increases significantly, which had in fact been an issue for me. He stated "You really do not want to get a brain bleed." Two weeks later I was diagnosed with a hemorrhagic brain tumor surrounded by edema. Oops - too late! Already bled in my brain.
Since that time I have been on a therapeutic phlebotomy--only tx protocol. I also experience significant issues with systemic inflammation so I also take Curcumin, L-Glutathione, and SPM Active (fish oil derivative). The anti-inflammatories do have some blood thinning effect, so I stay aware of that issue.
Phlebotomy-only will not stay my tx protocol forever. When PTG-300 becomes available I plan to try it as the chronic iron deficiency resulting from the phlebotomies cause its own issues. I will almost certainly opt for PEGylated interferon at some point. Hopefully Besremi will get FDA approved soon as well.
I have become a strong believer in the importance of individualized treatment protocols for each MPN patient. The "Standard Protocol" may or may not apply to any one of us. We each need to involve a MPN Specialist on our care team to ensure optimal treatment as most hematologists do not have the KSAs to provide truly individualized care.
Thank you so much. I have just been diagnosed with ET ( Platelets 520) had bone marrow biopsy. Have been prescribed Hydrox 500 mgms 3 days week and Aspirin 3 days week. Very nervous about medication ... etc., Kilmichael Ireland
Understandable to be nervous when first diagnosed. We all are. I managed just fine on aspirin only for 20+ years when I had ET. Unless you are in a high risk group or are symptomatic (e.g. thrombosis) then aspirin only is pretty standard. If you have specific concerns about HU then there are other options if you do need cytoreduction. The best thing to do is to see a MPN Specialist rather than a regular hematologist.
My husband also received similar results (slightly higher) on October 8th. His HGB was 20.9, RBC 6.8, and HCT 60. The panic set in when the Doctor's assistant called and said we think you have blood cancer and we're referring you to a Oncologist. Since that panic filled day we have gotten much more info. Some from our wonderful Hematologist and much of it from this incredible message board. Hunter is a wealth of knowledge and was the first to respond to my first post (similar to your concerned post). The scariest thing about this is the unknown and having to wait for answers, while of course, thinking the worst case scenario. We are still waiting for answers; JAK2 test takes about 10 days where we are (AZ). So, should have that next week. But, what we've learned in the last 3-4 weeks is that the Hematologist thinks, given some of his other bloodwork, is that its Secondary Polycythemia right now. My husband's EPO count is on the higher side of the range (PV usually there is very low EPO). He also has normal platelets and WBC. He's had two phlebotomies and his numbers have gone down quick quickly to 17.1 for HGB, 5.76 for RBC, and 50.7 for HCT. The Hematologist said its a good sign that his numbers are coming down so quickly, so I'm feeling a little bit relived. The doctor is continuing the phlebotomies until he's in the range of 15, and told him to cease taking Testosterone for the time being. He also has Sleep Apnea so that could be a contributing factor as well. If the JAK2 does come back negative, I'd like to be sure there's no kidney or liver tumor causing this, but we'll cross that bridge in due time.
One of the best advice I got from this board was to make sure your Hematologist is well educated on MPNs (ET, PV, and PMF), and start a list of questions. Luckily ours has seen quite a few cases. I also started a notebook to keep track of all my husband's bloodwork, and questions that pop up. The more educated you are, the better info you will be able to get from your Hematologist.
Hi I’m in almost the same boat as you! 50 year old similar numbers but my GP not concerned at all and it’s been the case since 2017. Ive pushed for haematology referral and they’ve come back asking for bloods re test in 6 months and stated I don’t really meet their criteria for further testing. Also said they would consider Jak 2 test if still high to ‘reassure patient’ as they think likelihood of PCV low. I am relieved but frustrated as something must be causing the increase in Hb, RBC & Haematocrit 🤷🏼♀️ Bloods will be done again in March so hopefully have an update then!
I'm in a similar position, and totally confused tbh.
I'm 51, female. Back in Nov '19 my haemoglobin count was 166 (bloods done in connection with something else). I was referred on and full blood counts repeated. (I don't even have all the results as tbh I didn't think much of it - I felt fine). I know the haemogloblin was fluctuating between 162 and 166. Only when they said they wanted to do a genetic test in June '20 did I sit up and take note. Anyway, I'm negative for JAK2, scans show spleen and area normal.
I was referred on to someone more senior as my bloods still showed polythycemia (high haemo and high haematocrit). The consultant seems pretty sure I have PV (they tested EPO as well before I saw him - it came back low). So, I've been having three weekly full blood count tests to see 'where we are'. I've had two out of three booked tests and both sets of results have come back within normal range - high end, but normal (haemo 151 and 150 / haematocrit 0.449 and 0.451).
I've no idea what the next step will be, but I'm hoping for a bone marrow biopsy as I'd really like to know one way or the other. It's the not knowing that I find most stressful, but it seems with these type of conditions there are no clear answers. (I have also been trawling the internet to try to account for my high results but nothing seems likely, other than PV).
Hi ah it’s actually so good to hear from someone similar, I feel so alone with it at times. Have you had any further developments since your post? I’ve only just seen it as I’m not on the site regularly 🙂
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Mayo Clinic Received a totally different approach to managing my MPN
ET JAK 2 positive
Newbie
