@rabab101, I found this information and negative or non-detectable JAK2
"Negative results for all JAK2 mutations does not necessarily rule out an MPN—the person may have a JAK2-negative MPN or the JAK2 mutation was not detected during testing. The JAK2 tests are performed on the genetic material found in white blood cells called granulocytes (from blood or bone marrow) and red cell precursors (from bone marrow). Not all granulocytes and red cell precursors will possess the JAK2 mutations. The proportion of affected cells will vary from person to person and may change over time. If there is only a small number of cells that have the mutation in the blood sample tested, then it is possible that the mutation will not be detected." You can read more here:
- JAK2 Mutation Test https://www.testing.com/tests/jak2-mutation/#:~:text=The%20JAK2%20V617F%20test%20may,results%20associated%20with%20these%20MPNs.
What further testing is your brother scheduled for to confirm or rule out polycythemia vera?
@apr931 Hi there! I wanted to chime in on your question regarding the number 32. I have no idea where that came from. As of your post that I am responding to, where your hemoglobin was 10.7 and hematocrit 33, both of those results are below normal. For a man and for a woman. Polycythemia vera diagnostic criteria includes one of which that is a highly elevated hemoglobin and hematocrit. Which you do not have. However, another diagnostic criteria for PV is the JAK2 mutation. I'm guessing your PV diagnosis was based solely on the JAK2 mutation, which would be inaccurate according to your hemoglobin & hematocrit levels. Throughout my extensive research into PV and myeloproliferative disorders in general, your particular results seem to point more towards essential thrombocythemia (ET), or primary myelofibrosis (PMF). Your low hemoglobin and hematocrit point away from PV. The diagnostic criteria for PV was recently-ish revised in 2016, and still your low hemoglobin/hematocrit levels point away from PV. Bless you & fight the good fight! Just trying to provide some (hopefully) helpful information. 🙂
Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
Ok! Thanks, the extra information you gave now makes more sense for the phlebotomies without a forma diagnosis. ☺️ I’m jealous of you being out in your garden! Mine are still buried under many feet of snow! Hoping to see some spring flowers soon, but I’m not holding my breath. 🌷
Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
First time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Good morning, @serenity55 I love your @name of Serenity. It’s a word in my morning affirmations…and what we all wish for in our lives. ☺️
Phlebotomies can be used in conditions where there is an elevated hemoglobin (too many red blood cells) and having a high hematocrit number which measures the portion of red blood cells in your body.
Blood is removed from the body to lower that count to normal. Too many red blood cells can cause a host of issues, the biggest concern being blood clots. It can also lead to other blood cancers. So, I’m scratching my head a little as to why your hematologist isn’t concerned about your condition.
My concern is that without a diagnosis just removing the excess blood from you body isn’t telling you the entire story of what’s causing the higher manufacturing in the first place.
Have you had another other tests run besides your CBC to check for a genetic mutation such as JAK2 which can cause Polycythemia Vera? Has your hematologist suggested a daily aspirin to avoid clotting? How often do you see him for blood work?
First time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.
Connect
Connect
Like
Helpful
Hug
@rabab101, I found this information and negative or non-detectable JAK2
"Negative results for all JAK2 mutations does not necessarily rule out an MPN—the person may have a JAK2-negative MPN or the JAK2 mutation was not detected during testing. The JAK2 tests are performed on the genetic material found in white blood cells called granulocytes (from blood or bone marrow) and red cell precursors (from bone marrow). Not all granulocytes and red cell precursors will possess the JAK2 mutations. The proportion of affected cells will vary from person to person and may change over time. If there is only a small number of cells that have the mutation in the blood sample tested, then it is possible that the mutation will not be detected." You can read more here:
- JAK2 Mutation Test https://www.testing.com/tests/jak2-mutation/#:~:text=The%20JAK2%20V617F%20test%20may,results%20associated%20with%20these%20MPNs.
What further testing is your brother scheduled for to confirm or rule out polycythemia vera?
-
Like -
Helpful -
Hug
1 ReactionHello and I am new to this. My brother just got his JAK2 V617F back and it said NOT DETECTED. What does that mean?
Treatment for PV causes low iron. That is the goal.
My husband was just diagnosed with PV. His iron level is also very low. Tomorrow he starts iron infusions. Do any of you have a similar problem?
-
Like -
Helpful -
Hug
1 ReactionOk! Thanks, the extra information you gave now makes more sense for the phlebotomies without a forma diagnosis. ☺️ I’m jealous of you being out in your garden! Mine are still buried under many feet of snow! Hoping to see some spring flowers soon, but I’m not holding my breath. 🌷
Yes they did the JAK test. We're not worrying about clotting because 28 years ago I had open heart surgery so I am on Warfarin all the time and my INR is checked monthly to weekly. And I am 82 years old but very active I've been out in my garden this morning. And I have done research on any of my conditions so much so that I have even done my own diagnosis.
-
Like -
Helpful -
Hug
2 ReactionsGood morning, @serenity55 I love your @name of Serenity. It’s a word in my morning affirmations…and what we all wish for in our lives. ☺️
Phlebotomies can be used in conditions where there is an elevated hemoglobin (too many red blood cells) and having a high hematocrit number which measures the portion of red blood cells in your body.
Blood is removed from the body to lower that count to normal. Too many red blood cells can cause a host of issues, the biggest concern being blood clots. It can also lead to other blood cancers. So, I’m scratching my head a little as to why your hematologist isn’t concerned about your condition.
I’ve posted a link to the Mayo Clinic website so you can read a little more about Polycythemia Vera. https://www.mayoclinic.org/diseases-conditions/polycythemia-vera/symptoms-causes/syc-20355850
My concern is that without a diagnosis just removing the excess blood from you body isn’t telling you the entire story of what’s causing the higher manufacturing in the first place.
Have you had another other tests run besides your CBC to check for a genetic mutation such as JAK2 which can cause Polycythemia Vera? Has your hematologist suggested a daily aspirin to avoid clotting? How often do you see him for blood work?
-
Like -
Helpful -
Hug
2 ReactionsFirst time using this. I have not been dx with PV but hemoglobin has been high for a couple years and hematocrit also. Been seeing Hemotologist and had 2 phlebotomies a year apart. He doesn't seem too concerned.
Thank you.
Dr. Trina Poretta, DO She’s with Comprehensive Cancer and Hematology in Cherry Hill and was recommended by my niece, a doctor. She’s very good and a good bedside manner.