PV that was't!

[ralphiev]

I have had a Hgb and Hct that has always been near the top of the normal range since I was in my 20's. As a health care provider I had yearly CBC's. Fast forward, I am now in my late 70's. Over the past 15 years, my Hct has frequently been elevated going as high as 52.4. As I have had a number of visits to the ER for A fib and then for frequent premature heart beats, the ER Doctor kept pointing out the fact that I had an elevated Hct. So I discussed this concern with my GP who referred me to a Hematologist for a Pv work up. I had no other symptoms such as enlarged liver or spleen and all other component of CBC have always been normal. Hematologist was pretty certain I had Pv. I immediately had a phlebotomy and had a second one a week later which resulted in my Hct becoming a nice normal 42. By this time, my other tests , Jak2, EPO, returned normal. So, the doctor said he needed a bone marrow biopsy in order to make a diagnosis. He had recommended Asa but since I was on Eliquis for my heart arrhythmia, I stayed on the Eliquis. I had the BMB which returned a normal result. So I have no blood or bone marrow disorders. The plan is to monitor my counts for a few months. My second phlebotomy was done on Oct 25. Yesterday, my Hct is maintaining at 42.9. Like all of you, I was in a panic anticipating a diagnosis of Pv and I found this site to be extremely informative and reassuring. I thought my story might be helpful. My thoughts and prayers are with all.

[Aime]

Glad for you it's not PV, enjoy your Christmas and new year after all the stress of tests and results. Kindest regards Aime x😻

[ralphiev in reply to Aime]

Thank you, Aime. The diagnostic process is indeed stressful but this site provided so much hope and reassurance, that I continue to read it almost daily. Merry Christmas and best wishes to you!

[tracey13 in reply to ralphiev]

This site really does help you and support you .

People on here are the ones who have a condition or like me it's my husband that has post PV MF.

He progressed to MF last December we were so distraught then after all the support on here it really gave us hope.

Here we are a year on husband is now on ruxolitanib and is doing really well. He's still working full time he does get exhausted but not as bad as he was in the previous years.

There's new medication coming out all the time. Researchers are making so much progress hopefully they will find a cure one day.

We are staying positive .

Tracey

[viabgram2u in reply to ralphiev]

What doctor did you see. Was it neurologist or other professional medical doctor?

[ralphiev in reply to viabgram2u]

I saw a Hematolagist for exam and testing. As JAK 2 came back back negative and EPO was normal, I had a bone marrow biopsy which came back normal with no evidence of disease.

[Ebot]

That’s excellent news! Thanks for sharing. Do they know what is causing the spike in HCT?

[ralphiev in reply to Ebot]

All testing negative for any disorders. I have had a high normal hematocrit forever. In 2004 an intermittent elevation began with no apparent cause. I never had any symptoms but with increasing age, the concern would be increased clotting risks. I have no history of venous or arterial clotting episodes. I had two total knee replacements this year with no problems. I will continue to be on Eliquis for arrhythmia history. Otherwise, I am doing good! Best wishes to you!

[Mazcd Partner MPNVoice]

Hi Ralphiev, great news, so pleased for you, and glad that you found this forum to be helpful. Wishing you a very Merry Christmas, Maz x

[ralphiev in reply to Mazcd]

Thanks Mazcd. Keep up the good work with this site. Merry Christmas. Nancy

[tracey13]

That's good news you don't have a blood cancer.

The main thing is they are monitoring you and this way any changes they can do more investigations.

Your bloods will change every day.

Do you have a healthy diet as diet can effect bloods it's just a thought.

Tracey

[ralphiev in reply to tracey13]

Hi Tracey13! Monitoring is being done and am on Eliquis due to arrhythmia history so I am comfortable with my treatment. Incidentally, when I had my total knee replacements this year, the surgeon insisted that I take ferrous sulfate which probably was not helpful for an elevated hematocrit. As I am a retired RN, i ended up taking them much less than prescribed. I try to eat healthy and avoid sweets. My daily multi vitamins are without iron.