Itchy after shower (dont really get it anymore, but have in the past)
Fatigue
No history of Bleeding or Blood clots
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About a month ago my PCP scheduled me a random blood test
Platelets came back high at 1019, so I am scheduled to see a Hema. For the following 3 weeks my CBCs are tested once every week, platelets fluctuate from 898-908.
I was also tested for the JAK2 mutation which came back positive.
After researching MPN I decide to look at old CBC results, and was able to track a test from an ER visit in 2019 (stomach flu) which showed my platelet count was at 972. So the ER probably thought It was due to an infection, and I have had unknowingly had a high platelet count for the past 3 years or longer.
Today I went to the Hema, which was at a cancer center. They took my CBCs,
PLT @ 898
RBC 6.45
RDW 16
HCT 51.6%
I see the Hema and he is rushing the entire appointment, and basically says hes worried about my HCT and says it should ideally be at 45% so he schedules me a phlabotomy for next week and prescribed me with low dose asprin (was already taking told to by pcp).
I tried to ask him about ET, but he was dismissive and rushing the whole time. I also ask him if he has any other patients with mpn, and he just responded with none my age.
So Definitely seeking a second opinion. And if anyone is from Hawaii do you have recommendations? Only found one other doctor on the mpnforum list, so I am looking to setup an appointment with her.
Questions.
Should I get the phlebotomy done?
Do you think its ET?
Is there anything I can do to lower my platelet count? And I think I am considered low risk so Is there nothing to be done but to monitor my CBCs?
Written by
Keanu808
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Your blood counts would appear to indicate polycythemia (PV) rather than ET.
JAK2 positive also gives the game away.
Getting your blood drained by venesection is only the same as donating blood so have it done - if you do get diagnosed with PV you'll have to get used to it! (it's no big deal, by the way).
And - easy to say, I know - try not to worry. There are people here who have lived with MPNs for years and will support you while you need support.
By the way, you aren't the only person to notice that haematologists sometimes don't have much experience of MPNs!!
I had a similar PLT history, it was high for at least 5 years before my Dx. I have Dx of PV with ET features, yes it's ambiguous.
Phlebotomy is a good idea for quickly reducing your HCT. Your Dr is following current practice to get your HCT down as quickly as possible, above 45 is a high risk for thrombotic events, we've had recent posts discussing this idea. But phlb is not expected to reduce PLT, so you're likely to need more than just phlb to control your PLT level.
The standard way to reduce PLT requires medication. With MPN there is limited benefit from diet, supplements etc, although it could help at the margins. Your PLT is high enough that a specialist will likely want it reduced by meds.
The three current meds are Hydroxurea (HU) , Anagrelide, and interferon. HU reduces both PLT and HCT for most patients and could allow you to skip the phlbs once HCT is cotrolled. Anagrelide would not likely be a 1st choice since it specifically acts on only PLT, not HCT. Interferon is becoming more common in use as it can stop or even possibly reverse the disease. (I am on it) Each patient reacts differently to these meds and your Dr should discuss the options in detail. There are great discussions in the forum here also.
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When I started aspirin it reduced my HCT quickly, but you are already on that and HCT is still high so the phlb and/or meds are needed.
With your bloods and Jak2+, odds are very high you have MPN, and PV is a good start, but the high PLT could point to ET. Your Dr may order an EPO blood test, this is worth having for a PV Dx, see the list below.
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Here is a standard list for 2016 WHO diagnostic criteria for PV. This page also shows ET criteria. They first rule out PV before considering the ET Dx option. You have criteria 1 and 3 which according to this list is not yet a solid PV Dx. My Dr ordered a marrow biopsy (BMB) which would give you a more clear answer but not all Drs feel it is required.
(Diagnosis of PV requires meeting either all 3 major criteria, or the first 2 major criteria and the minor criterion)
-Major criteria
Criterion 1 (clinical)
Hb, >16.5 g/dL in men, >16.0 g/dL in women
or Hematocrit, >49% in men, >48% in women
or Red cell mass Increased 25% above mean normal predicted value
Criterion 2 (morphologic)
BM morphology* Hypercellularity for age with trilineage growth (panmyelosis), including prominent erythroid, granulocytic, and megakaryocytic proliferation with pleomorphic, mature MKs (differences in size)
Criterion 3 (genetic)
JAK2V617F, or Presence
JAK2 exon 12 mutation Presence
-Minor criterion
Serum Epo level Subnormal
You should also ask for your Jak2 allele burden (AB%). It goes from 0-100%. This is useful esp for future reference. PV tends to a higher %, often over 50%, ET tends lower, but these have many exceptions.
Thanks for your input, all these replies really help to put my mind at ease. I asked my Dr. if he thinks I should be on any medications and he told me that because my PLT wasnt 1500 that medication isn't needed. In your experience what was your PLTs at when put on medication also how old are/ were you at the time of starting meds?
Here is my PLT plot since my Dx. It goes down after I started HU (Now INF) meds. It rose from ~450 (2013) 650 (2016) 1000( 2020). I had 4 readings near 1000 at Dx period, similar to yours.
I started at age 61. Age 60 is sometimes set as an arbitrary and instant jump in risk level for MPN. It's true that some Drs do watch and wait at younger ages. But esp regarding INF therapy, current thought is to start early for everyone to reduce odds of progression.
As Member Hunter has noted the change in PLT is at least as important as the value. The importance of the actual PLT level is currently less clear than for HCT. Do you have any CBCs from farther in the past like I had here?
Current practice has 450 as an upper limit for MPN patients, but some Drs are ok at an older limit of 600. You can see here my provider has an even stricter limit of below 400. I think most Drs should want it controlled when it gets near 1000 as we have/had. Letting it rise to 1500 is not very common to my knowledge.
I wonder if your Dr's 1500 limit is more suited to a non-MPN patient where high PLT levels can be temporary and self correcting.
A good thing in your plot is the levels are stable. That could be why your Dr is ok leaving it alone. But it is still high and you do need an opinion from a more caring and specialized Dr.
From this plot you've apparently had MPN at least since 2019. Incidentally my regular doc sent me to a hematologist mostly from my high WBC, which were not so extreme; the extra high PLT was not his stated reason for the referral.
You already have some excellent feedback from our fellow MPNers,
Rushing through an appointment when discussing a MPN diagnosis and failing to give you a proper diagnosis is not acceptable. The one doc I assume you are talking about is Dr. Michelle H. Miyashiro. It sounds like she has a far better and more compassionate style that the first hematologist you saw. If i was in you situation I would fire the first doc and switch to a doc with a better style and more knowledge abut MPNs.
As others indicated, it sounds like the doc is thinking PV rather than ET. You do not use phlebotomy to treat ET since it can raise the platelet levels. It does lower the erythrocytosis with a target for males of HCT<45%.
As the others indicted, it would be a good idea to do the phlebotomy while you wait to see the new doc, This is standard practice in initiating treatment for PV. The goal is to induce chronic iron deficiency since your body cannot make RBCs without iron. Once you see the new doc you can review your diagnosis and treatment options.
Yes thats the Dr I am looking to see, already talked to my pcp to schedule an appointment. Weird thing is my pcp was worried that because we live on an island, all the doctors know each other and some wont agree to a second opinion in fear of de-legitimatizing the first docs opinion. Also I have quest as health insurance so hopefully she accepts me.
It is always your prerogative to seek a second opinion on any medical issue. Any doctor that objects to that is putting their ego ahead of your health. That would be grounds for immediate termination of a professional relationship.
I would suggest replacing the doc you saw rather than getting a second opinion. Acting dismissive when discussing a MPN diagnosis is not acceptable medical practice. Neither is being unclear about your diagnosis. Your question about how many MPN patients your doc has seen is very reasonable and you were not given an appropriate answer. The wonderful local hematologist I see told me he has only seen 5 MPN patients (2 PV patients)(in 20+ years). He also told me he does not consider himself to be a MPN expert. He welcomes consultation from the MPN Specialist (who is too far away for my routine care). I really love that doc! He is quite gifted at the art of healing and even though he is not a "MPN Expert" he always takes time to discuss what is going on.
Hope you get everything worked out to your satisfaction.
good advice. I have ET and JaK2 and takehydroxy and low dose aspirin. personally I noticed that when I put on extra weight during lockdown my platelets went up keep a record and check with your dr. Try not to worry You are young to be diagnosed, but its good that you are getting good care. Bestwishes
Keuna. I had similar situation insisted on bloods for sport injury not healing . 3 months to get correct blood tests sent. Immediately sent to Haemotology cancer clinic . Confirming I had Jak 2 & ET . Also a quick appointment told I had to take HU chemo tablets. I checked my medical records & saw my platelets were rising from 2016 but no one ever mentioned it. They were 579 when told to go on chemo drug in March . Hydroxycarbamide made me very I’ll . So currently only aspirin until August when assessed again . Trying to get an MPN appointment elsewhere as haematology have little knowledge of this rare disorder . Read lots on it . I tried eating vegetarian no dairy which helped platelets to stay stable but told they will rise if no treatment. Aspirin is important as thins the thick platelets. However aspirin reacted to many fruits & foods & gave gastric problems. I now take it with my breakfast as night time it caused gastric problems. I am in UK so maybe some U.S readers can advise on MPN expert . But guess it will be in U.S. Usually email you can write to them on . Good luck Julia UK 👍
Hi, if it’s ET it’s high platelets only. Sounds to me the treatment is correct. By all means seek a second opinion. Maybe your heamo’s was over booked and was really busy. Hopefully he will have more time for you next time. Good luck
Great advice! The most important piece of advice is definitely go see and MPN specialist - most GPs and even hemos just do not have the knowledge/experience to deal with MPNs.
Also important to figure out if it is ET or PV you are dealing with. In my case my MPN specialist wanted a bone marrow biopsy to help finalize diagnosis (also to provide a baseline for potential future changes/development if needed). Wasn't a pleasant experience but I am glad I had it done. I was 50 when diagnosed with ET Jak2+ (although looking back at my CBC history I had high platelets at least from the time I was 43). Given my age, <60/65 and no history of thrombotic events, my MPN specialist initially was fine with an aspirin and monitor approach. While the official platelet range is <450, my doctor was fine with platelets at even 1,000 as long as there weren't any other complications/issues (and I was on the low dose aspirin). That changed when my platelets shot up to 1,400 and I had bleeding at my gums. We then decided to go down the medicine/cytoreduction route.
Started out on HU, but couldn't tolerate it and moved to Peg (interferon) . Good news is that there are more options these days and research being conducted for future medicines as well. Def seek a second opinion. Good luck!
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Specialist - 1st visit 
First post and thank you
First venesection - symptom query
Has anyone in Scotland received a letter regarding isolating due to Covid-19 and MPN?
