Waiting on JAK2 results
Posted , 5 users are following.
Well, the new Dr I saw had never heard of polycythemia, but he was very kind and respectful and listened to what I said and agreed to refer me to a hematologist, who I saw yesterday. The hematologist was awesome, so nice. He is confident that I have it, but ordered the JAK2 test to verify. He said there is really no other explanation for why my hematocrit, hemoglobin and RBC keep going up while my ferritin drops.
One odd thing though, is that over the last year, my white cell count has dropped significantly. Initially, my neutrophils were very high, at 13000 (normal is 1500-8000) I have had six CBCs done since, and each one shows a substantial drop. A week ago it was 4500, yesterday it was down to 2800. Even the hematologist is puzzled by this and said he didn't know what was going on there, but wasn't too concerned as it was still in the normal range. Anyone else have anything like this happen?
How long did it take for your JAK2 results to come back? I am so anxious not knowing.
I have been feeling really good on the aspirin, he said to keep taking it and to stop the iron supplements. Wants my ferritin in the single digits. How do you all cope with that? When my ferritin is that low I feel awful, really weak and out of breath and pounding heart, just like I have been feeling from the polycythemia now. My ferritin is at 12 right now, I feel like it is at a happy place if I can control the poly. Yesterday only my RBC was still a little high, but I think that is because I just finished my period which is always heavy and lasts ten days. Dr said my body is self regulating right now, and that the heavy periods are what has been keeping my numbers from skyrocketing. Guess they are good for something.
0 likes, 6 replies
1958_pele miranda98
Posted
Hi miranda my results were back the next time I saw my haematologist can't remember how long it was, but it wasn't very long. Keep on with the aspirin, and I hope everything works out for u. X
clem19079 miranda98
Posted
ellen68007 miranda98
Posted
this process takes a long time before a final diagnoses can be verified. The test you are now waiting for took a month for results because my blood samples had to be sent away for testing. My Hemotologist gave me my follow up appt for one month later. The hardest part for me was the many tests and the waiting so the Doctors could get their diagnoses. Finally months later I was diagnosed with secondary Polycytemia. Once I got a firm diagnoses and given my treatment I was happy just knowing what I had to do and when. It sounds like you are happy with your Hemotologist so just hang in there until he gets to the bottom of your problem.
miranda98 ellen68007
Posted
Well, I just got a letter in the mail yesterday with a follow up appt for ten days from now, and it says diagnosis: Polycythemia, so am guessing the test must have come back quickly here. It doesn't specify primary or secondary, however I dont smoke or drink or live at high altitude, and am not particularly overweight, so that seems to probably indicate primary, if I am to understand correctly. Guess I will find out on the 26th.
ellen68007 miranda98
Posted
HI Miranda. At least you will have some answers soon. With the tests you have had did you hand a bone marrow aspiration? My Hemotologist wanted to be sure mine was secondary or primary. The bone marrow test confirmed it as not my bone marrow producing the extra red blood cells and based on the extensive blood testing it was then confirmed as secondary Polycythaemia. By sounds if it you are getting close to finding out. I was afraid when I first met her. I said what is the treatment for this. She said if it's primarary it's a pill and low dose aspirin. Regular blood work to see if plabotomy may be required depending on how high my HCT is. If it's secondary low dose aspirin and treat the condition that is secondary. With me it's COPD. The low dose aspirin was quickly changed to a blood thinner and an every 3 month visit to the respirologist. B-12 injections once a month by my family Doctor and blood testing every 3-4 months. Keep me posted
Have a good day!
miranda98 ellen68007
Posted
No, I haven't had a bone marrow test yet, just blood. Will have to see what he says when I see him again. I've never had any breathing issues until recently, when the shortness of breath, fatigue, pounding heart, nausea and sweating attacks are what sent me to the Dr in the first place. Since I have been on the aspirin I have not had any issues though, so pretty sure the polycythemia was the source of that. I will be sure to update when I see him. Thanks for your help!