Mine is 45. Although now that my iron has tanked from phlebotomies he let it go to 49 and I felt like complete crap! Waiting on next labs. I was doing well, numbers wise for almost two years and then my iron was basically gone so they doubled my hydroxyurea and we will see my numbers in a few weeks. Normally that will lower platelets drastically but doesn’t help much with my red cells. We shall see. It’s a balancing act but I know that more meds make me feel horrible…
Mine is 45. Although now that my iron has tanked from phlebotomies he let it go to 49 and I felt like complete crap! Waiting on next labs. I was doing well, numbers wise for almost two years and then my iron was basically gone so they doubled my hydroxyurea and we will see my numbers in a few weeks. Normally that will lower platelets drastically but doesn’t help much with my red cells. We shall see. It’s a balancing act but I know that more meds make me feel horrible…
My husbands first hematologist let the HCT go up to 52.. he was just interested in the platelets. My gut feeling was to seek a 2nd opinion with a University physician. And sure enough my "gut" served me well. This 2nd opinion Dr said... I cant take your husband on as a patient because you made the appt just for a second opinion BUT.. please tell his hematologist that he needs a phlebotomy like YESTERDAY! I want that HCT to be below 45. He only needed phlebotomy and his numbers stayed between 39 and 43 for almost 4 years.
His original Hematologist left the practice and his replacement agreed about the target number of 45. Well... now this Dr left and the practice closed down.
My husband saw a new Dr and his blood work at the office was a HCT of 47 ...he wasn't concerned and told us that since my husband never had a blood clot... he will not do a phlebotomy until the number is around 49 or 50.
I think he needs another " new" Dr!!
My husbands first hematologist let the HCT go up to 52.. he was just interested in the platelets. My gut feeling was to seek a 2nd opinion with a University physician. And sure enough my "gut" served me well. This 2nd opinion Dr said... I cant take your husband on as a patient because you made the appt just for a second opinion BUT.. please tell his hematologist that he needs a phlebotomy like YESTERDAY! I want that HCT to be below 45. He only needed phlebotomy and his numbers stayed between 39 and 43 for almost 4 years.
His original Hematologist left the practice and his replacement agreed about the target number of 45. Well... now this Dr left and the practice closed down.
My husband saw a new Dr and his blood work at the office was a HCT of 47 ...he wasn't concerned and told us that since my husband never had a blood clot... he will not do a phlebotomy until the number is around 49 or 50.
I think he needs another " new" Dr!!
I feel ya! My oncologist retired and this new young guy comes in and changed up my entire routine. He ran my iron test right after I had two phlebotomies within five weeks so it was super low. Then he made me up meds from 3X a week to daily? They make me feel like crap! Labs again after six weeks from the last phlebotomy. For sure platelets will be very low and hoping to go to at least 5X a week. Happy your husband stays steady for so long. On average, I get a phlebotomy evry 10 weeks. I had two close together because I went four months previously. Get a new doctor. I may for the new year.
I’ve been having monthly blood tests (CBC) since my diagnosis of PV in 2021. My doctor was using Hematocrit to determine when I needed a phlebotomy. He changed that to using Hemoglobin as a determinant about a year and a half ago. He also keeps an eye on my platelet count but has used dosage adjustments (HU) to manage that.
I’ve been feeling really good and have not had a phlebotomy in well over a year now.
I’ve been having monthly blood tests (CBC) since my diagnosis of PV in 2021. My doctor was using Hematocrit to determine when I needed a phlebotomy. He changed that to using Hemoglobin as a determinant about a year and a half ago. He also keeps an eye on my platelet count but has used dosage adjustments (HU) to manage that.
I’ve been feeling really good and have not had a phlebotomy in well over a year now.
So How high does he let your Hematocrit go? The HU def does its job in lowering platelets. I’m hoping it keeps my other numbers from rising so quickly also.
I was diagnosed with secondary PV back in March and 50 HCT is current threshold for phlebotomy. Based on my research, I am going to push for 45 or lower HCT target during my upcoming hematologist appmt. Because
I am dealing with radiation-induced right carotid stenosis (total blockage), I am very concerned with clotting
risk on left side. Any comments welcome.
I was diagnosed with secondary PV back in March and 50 HCT is current threshold for phlebotomy. Based on my research, I am going to push for 45 or lower HCT target during my upcoming hematologist appmt. Because
I am dealing with radiation-induced right carotid stenosis (total blockage), I am very concerned with clotting
risk on left side. Any comments welcome.
My average HCT readings are quite a bit higher than your target. But I’m on a blood thinner (Eliquis) so I guess that’s why my doctor seems to be OK with it remaining at that level.
I was diagnosed with secondary PV back in March and 50 HCT is current threshold for phlebotomy. Based on my research, I am going to push for 45 or lower HCT target during my upcoming hematologist appmt. Because
I am dealing with radiation-induced right carotid stenosis (total blockage), I am very concerned with clotting
risk on left side. Any comments welcome.
Hi sounds like you have a lot on your plate. I have PCV
Is yours with JAK2 mutation
I can't recall if it is secondary.
Anyhow I have been dealing with it a few years only doing phlebotomy which is draining like once a month.
I have refused to go on any medication and only take baby aspirin. But I try to eat all organic. And try to avoid sugar except natural fruits
But my oncologist will not allow me to have anything over 44. (I am constantly having to have phlebotomies which cause low iron ).
Sounds like your oncologist allows your HCT to be higher and is ok with it
My energy level has improved as I have focused on God as my top priority and he has truly blessed me
My health pinnacle that I try
1. Spiritual
2 water
3 sleep
4 diet
5 exercise
Have you been able to sleep and hydrate etc
I hope your journey will improve since you were recently diagnosed
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Mine is 45. Although now that my iron has tanked from phlebotomies he let it go to 49 and I felt like complete crap! Waiting on next labs. I was doing well, numbers wise for almost two years and then my iron was basically gone so they doubled my hydroxyurea and we will see my numbers in a few weeks. Normally that will lower platelets drastically but doesn’t help much with my red cells. We shall see. It’s a balancing act but I know that more meds make me feel horrible…
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My husbands first hematologist let the HCT go up to 52.. he was just interested in the platelets. My gut feeling was to seek a 2nd opinion with a University physician. And sure enough my "gut" served me well. This 2nd opinion Dr said... I cant take your husband on as a patient because you made the appt just for a second opinion BUT.. please tell his hematologist that he needs a phlebotomy like YESTERDAY! I want that HCT to be below 45. He only needed phlebotomy and his numbers stayed between 39 and 43 for almost 4 years.
His original Hematologist left the practice and his replacement agreed about the target number of 45. Well... now this Dr left and the practice closed down.
My husband saw a new Dr and his blood work at the office was a HCT of 47 ...he wasn't concerned and told us that since my husband never had a blood clot... he will not do a phlebotomy until the number is around 49 or 50.
I think he needs another " new" Dr!!
I feel ya! My oncologist retired and this new young guy comes in and changed up my entire routine. He ran my iron test right after I had two phlebotomies within five weeks so it was super low. Then he made me up meds from 3X a week to daily? They make me feel like crap! Labs again after six weeks from the last phlebotomy. For sure platelets will be very low and hoping to go to at least 5X a week. Happy your husband stays steady for so long. On average, I get a phlebotomy evry 10 weeks. I had two close together because I went four months previously. Get a new doctor. I may for the new year.
I’ve been having monthly blood tests (CBC) since my diagnosis of PV in 2021. My doctor was using Hematocrit to determine when I needed a phlebotomy. He changed that to using Hemoglobin as a determinant about a year and a half ago. He also keeps an eye on my platelet count but has used dosage adjustments (HU) to manage that.
I’ve been feeling really good and have not had a phlebotomy in well over a year now.
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1 ReactionSo How high does he let your Hematocrit go? The HU def does its job in lowering platelets. I’m hoping it keeps my other numbers from rising so quickly also.
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1 ReactionMy hematocrit #’s have been in the high range since I started testing. Usually 50 to 53. But they have remained stable at that level for a long time.
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1 ReactionI was diagnosed with secondary PV back in March and 50 HCT is current threshold for phlebotomy. Based on my research, I am going to push for 45 or lower HCT target during my upcoming hematologist appmt. Because
I am dealing with radiation-induced right carotid stenosis (total blockage), I am very concerned with clotting
risk on left side. Any comments welcome.
My average HCT readings are quite a bit higher than your target. But I’m on a blood thinner (Eliquis) so I guess that’s why my doctor seems to be OK with it remaining at that level.
Hi sounds like you have a lot on your plate. I have PCV
Is yours with JAK2 mutation
I can't recall if it is secondary.
Anyhow I have been dealing with it a few years only doing phlebotomy which is draining like once a month.
I have refused to go on any medication and only take baby aspirin. But I try to eat all organic. And try to avoid sugar except natural fruits
But my oncologist will not allow me to have anything over 44. (I am constantly having to have phlebotomies which cause low iron ).
Sounds like your oncologist allows your HCT to be higher and is ok with it
My energy level has improved as I have focused on God as my top priority and he has truly blessed me
My health pinnacle that I try
1. Spiritual
2 water
3 sleep
4 diet
5 exercise
Have you been able to sleep and hydrate etc
I hope your journey will improve since you were recently diagnosed
Sunshine. 🙏