ET with high HCT?

[Alexbits]

Hi there,

I wonder if there's anyone else who was diagnosed with ET and has a hematocrit level 48-50 and RBC 5.5-5.9, HGB 155-160? I'm male.

I had a BMB year ago which was classified as ET, also I'm JAK2+ (17%).

My RBC for last couple of years was in range from 5.2-5.6, HGB 150-156 and HCT 45-48. But my last blood check showed RBC 5.8, HGB 160, PLT 630, HCT 50. I don't know what to think about this. My GP told me not to worry and repeat blood test again month later.

Thanks

[mhos61]

Yes, partly!

During the time that elapsed from GP referral to haematologist my HGB Reading was 16.1 (female) and HCT 47.9, rbc was normal, my platelets were 500. I was given a diagnosis of ET Jak2+. This mutation in ET is more likely to present with higher haemagloben/haematocrit levels. We have to be cautious of ‘Masked PV’ however.

[Alexbits in reply to mhos61]

Thank you for your reply! It helps

[clubdino]

I had a high hematocrit when I was first diagnosed with ET. It went away over the years and now I have a normal hematocrit.

[Alexbits in reply to clubdino]

Hi, thanks. What about RBC count?

[clubdino in reply to Alexbits]

Yes, my RBC count, HGB, and HCT were elevated. For several years before I was diagnosed I used to donate blood and the techs would remark about my high HGB every time. I remember them saying it was 17. (I'm female.) I've had ET for 15 years and after diagnosis it was only elevated for a couple years before it went completely away. Oh and I'm CALR positive so I definitely don't have PV.

[Alexbits in reply to clubdino]

Thank you for details!

[Susana7]

Hi Alex, I was initially diagnosed with ET, but as the HCT started to rise the diagnosis changed to PV. In your case, it may simply be that you were dehydrated on the day you took your bloods which would explain a small rise in the HCT. But if the raised counts are persistent in future tests, I would suggest asking your haemo to check if you now have PV. In my case the treatment is the same, I am on Pegasys interferon that controls all the counts very well. Good luck! Susana x

[Alexbits in reply to Susana7]

Hi Susana. Thank you!

[hunter5582]

Sounds like something to keep an eye on. I was ET for nearly 25 years, then progressed to PV. Also JAK2+ (25%). There is a continuum between ET - PV - sometime we do not fit neatly into one or the other. Could also just be a fluke lab if it is a one-time thing. Suggest you see what the next lab looks like. If you are not already seeing an MPN Specialist (not all hematologists are MPN experts) then it may be time for a consult.

[Alexbits in reply to hunter5582]

Thanks for sharing. Unfortunately, I was unable to find an MPN specialist in my country or nearby yet. I will continue to look. So your JAK2 stayed at 25% all these years?

[hunter5582]

My mutant allele burden was never checked until recently. I suspect since I started with ET and progressed to PV, that it has changed over time. I did not see a true MPN specialist until 2018. The doc I found was on this list of patient recommended MPN expert docs mpnforum.com/list-hem/ . The doc I saw is the Director of the MPN Clinic at Johns Hopkins Hospital. I had to travel a bit to see him, but totally worth the trip. All the best to you.

[Alexbits in reply to hunter5582]

I see. Thank you. I'll try to find one.

[Aneliv9]

I am female, and 1 month ago that i had the officia diagnosis of ET, my counts where: HMGB 16,4 and HCT 17,4. A little bit over the upper range. My ET diagnosis also confirmed through BMB. 2 years before,i didnt have the JAk mutation but since then i may have it. Didnt have new molecular test

[Aneliv9]

Sorry. HCT was 47,2 not 17,4! My rbc was also a little bit over the upper range. Just a little. As far as "masked PV" i believe that you must also have low count on erythropoietin serum(EPO) . My level of EPO was normal

[Alexbits in reply to Aneliv9]

I'll check the EPO next time. Thanks! Did you take any meds to lower the counts?

[Aneliv9 in reply to Alexbits]

I just take aspirin cause i am borderline high.