Awaiting Results

[Nate6546]

Hello everyone, I am not diagnosed with an MPN just yet, but it may be coming, but still confused as to weather I have it or not.. I’m getting tested here next week for the gene mutations. I am 25 years old and am a hemochromatosis carrier, but do not have hemochromatosis & I have very high bilirubin which my doc either thinks is Gilbert’s syndrome or caused by the breakdown of the all the red cells I have. I’ve been going through testing for the last 4 months & have never experienced any sort of itching, night sweats, headaches, fatigue, but have burning feet occasionally and numbness on my left hand that comes & goes. I also am ALWAYS hungry & have never had any sort of spleen problems. I will say my hemoglobin at the time was 18 and my hematocrit was 52 and I got a phlebotomy & 4 weeks later re tested and everything was in the normal range, but feel they will slowly go up overtime. Just ready to get to the bottom of this & start feeling better

[monarch5000]

An inexpensive blood test called EPO can help determine if your high hemoglobin and high hematocrit is due to a chronic blood cancer - polycythemia vera - or a non-cancerous disorder known as secondary polycythemia. testing.com/tests/erythropo...

A low or low normal test result number (5 or less) suggests polycythemia vera. A high or high normal test result number (8-18) suggests secondary polycythemia.

[Nate6546 in reply to monarch5000]

Hey Monarch, my EPO was 8 and am jak2 negative. Not sure what to do now

[monarch5000 in reply to Nate6546]

Doesn't look like polycythemia vera. None of us know much about all the other blood related disorders.

[Nate6546 in reply to monarch5000]

After I got a phlebotomy my hematocrit dropped to 42 and my red cells went down to 4.6 & my platelets dropped to the low 300’s. If I had the mutation my heam said that my red cells would still be high or high normal & but my hematocrit would be in range after a phlebotomy. Is that correct? Sorry know little about this

[hunter5582]

Hello and welcome. It sounds like you will have to wait for all the testing to be done before you can determine whether you have a primary or secondary polycythemia present. There are certainly reasons to think this could be secondary, but you need facts not conjecture to determine what is going on.

I have found that the worst part in these situations is worry due to not knowing what is going on. Worry can make you mind go to some very unhelpful places. You should have some answers in a few weeks. Until then, be confident you will find an answer and will be able to figure out a good plan once you know what is going on.

All the best.

[Elizka]

Glad you have joined this community for insights. Best of luck.

[MAP44]

Sorry to hear of your health issues Nate6546. We are a friendly and helpful group.

Hopefully the Doctors give you some good news and sort out your blood, but if you belong here because you have an MPN you are in great hands.

Try not to worry too much as you are young and your body is strong.

I have PV and my 22 yr old daughter has ET, both Jak2+. If possible find an MPN Specialist to take care of you.

Please keep us posted. ❤️❤️

[Nate6546 in reply to MAP44]

Hey MAPP 44, thanks for the support & glad you’re doing well. I turned out to be jak2 negative with an normal EPO, but not sure what to do now

[Realy]

Is total bilirubin, direct, indirect all elavated? And what are the levels?

[Nate6546 in reply to Realy]

total bilirubin