Physician says he won’t order therapeutic phlebotomy for my hematocrit at 48.1 and I’m female!

[Wewo01]

I’m mad! So mad. My dr says Hydrea is what I should stay on to lower my WBC’s, RBC’s, HCT and platelets! I have been on it for a year and that hasn’t happened. He says I do not have PV because my EPO is normal. It’s very low but considered normal. Should he be basing my dx just on the EPO?

[Wewo01]

I forgot to add I was just diagnosed with myocardial ischemia. I have tiny veins! Everyone who draws my blood comments on how tiny they are! I am having a cath in a week.

[neela2020]

Hi, can understand your frustration, as I am sailing in same boat. You need to know blood drawing only reduces red cells. If the others counts are high too then blood letting wont help. You probably need adjustment of hydra you already taking. I have same problem with all counts, hence blood drawing was never recommended.Hope it helps!

[Ebot]

Is your doctor an MPN specialist? Target HCT levels here in the U.K. are 45. I would be concerned to have my HCT levels so high - particularly since the Hydroxy doesn’t seem to be bringing it down. What kind of MPN does your Doc think you do have? And on what basis was that diagnosis made? Certainly high levels of HCT is an indicator of PV regardless of platelets. It would not be unusual to have both venesections and to be on Hydroxy until your numbers stabilised but you’d expect the venesections to drop off as the drug intervention kicked on (or dose was adjusted).

[Wewo01 in reply to Ebot]

He says I have ET. I have had a BMB and genetic testing of which he has not gone over with me. I am JAK2 positive. My HCT has been on the rise, slowly but surely, over the last year. As well as my white blood cells.

[Ebot in reply to Wewo01]

Yup, definitely time to find an MPN specialist! Good luck.

[hunter5582]

Time for a new doctor. Low EPO is a minor PV criteria. It is not necessary to make the diagnosis. mpnconnect.com/pdf/who-diag... .

Phlebotomy is a standard part of treatment for PV when cytoreduction alone does not reach the therapeutic target for HCT. Many MPN Specialists now use the gender-adjusted targets of 45% for males and 43% for females. Erythrocytosis is the single biggest risk factor for thrombosis for people with PV. Controlling it is a critical part of PV treatment.

It sounds like you are refractory to hydroxyurea. I would suggest it is time for a new cytoreduction agent. As you know, PEGylated Interferon and Jakafi are the other two meds commonly used to treat PV. The good news is that Besremi may be approved by the FDA for PV treatment here in the USA in mid-November.

I really would seek care from a MPN Specialist ASAP. Quality MPN care is worth riving however far you have to go to get it. Here are the links to MPN Specialists.

pvreporter.com/mpn-speciali...

mpnforum.com/list-hem./

[Wewo01 in reply to hunter5582]

Thank you! I saw this Dr on July 31, after I left my previous one. He seemed knowledgeable but is not on the MPN provider list. I take issue with him because I have had labs once a month, since, showing pertinent values all on the rise and NEVER got a call from his office. He did genetic testing and did not tell me that he ordered this genetic panel. It cost me $4500. I have a high deductible plan. Then when the results came in confirming JAK2, I still never heard from his office. I finally messaged him and asked why I did not get a call. He said it was because I already had the diagnosis when I came to see him! He clearly doesn’t give a crap! I am moving on! I plan on making an appointment at Vanderbilt in Nashville where there are 2 providers on the MPN list.

[Wewo01 in reply to Wewo01]

Also, he says I do not meet criteria for PV. And he messaged me that in all caps. He won’t tell me what he is basing that on. He obviously does not like being held accountable by a patient.

[Meatloaf9 in reply to Wewo01]

Sorry you are having trouble with this Dr. At the very least he should sit down with you and explain what he thinks is going on. You sound similar to me in that my counts slowly increased over the last 2 years and my Dx was changed from ET to PV. My EPO was low but still barely within the reference range and this was one of the determining factors.From what you have said I would definitely be looking for a new Doc. A MPN specialist would be your best course of action in my opinion. I see a local doc and a specialist at Cleveland Clinic. I have had disagreements with my local doc to the point where he walked out of the room on me but then returned with a completely different attitude. So like others have said you have to be your own best advocate. The squeaky wheel gets the grease.

By the way, my local doc prefers controlling my PV with phlebotomies and the specialist I see twice a year prefers controlling it with medication alone if it can be achieved.

Best of luck to you and please find a Dr that can answer your questions. If my doc messaged me in all caps, I would probably..................

[hunter5582 in reply to Wewo01]

Definitely time to move on, again. You need the doc to care and be knowledgeable about MPNs. Hope that third time is the charm.

[Wewo01]

Thank you! You input is so appreciated! I was furious with this Dr last night when he sent me that message.

[mhos61]

Just adding my support here, you’ve already had some great answers. I agree with others that you should find yourself an MPN Specialist.

The first priority of your haematologist should be to prevent you suffering any potential thrombotic event. Alarm bells should be ringing loudly here, Jak2+, a high haematocrit and heart issues!!

[Wewo01 in reply to mhos61]

Thank you so much! Alarms were certainly going off for me. I have an appointment on November 8 with a real MPN specialist at Vanderbilt in Nashville. I will keep you all posted. I am so very grateful for everyone here! ❤️

[mhos61]

Good move, keep us updated. Xx

[ladyanello]

Glad you are seeing someone at Vanderbilt. Heard good things about their MPN work. Do you have your bmb results? They should give you a lot of info about diagnosis. Also wondering with your heart problems, if the 48.1 hematocrit could be polycythemia as opposed to PV itself? Hopefully it is not Vera and the new specialist will take the time to sort this out and communicate! Will keep an eye out for info as you get it and I wish you well.

[Wewo01 in reply to ladyanello]

Hi. I have had my BMB and genetic panel results sent to the MPN specialist at Vanderbilt along with clinical notes ans monthly labs. I am so happy to finally see a real MPN specialist! Thanks for the input! I will update after my visit.

[Loooonglife]

In addition to finding a new MPN specialist I would bring your elevated HCT to the attention of your medical team before your upcoming cath procedure. Does this pose additional risks?Wishing you well!

[Wewo01 in reply to Loooonglife]

I did bring it to the physicians attention in my office visit but I should remind him. Thank you!