Anyone living with Essential Thrombocythemia with JAK2?

@mjfp49
I am very interested in what others say about HU and anemia. I take 500 MG HU daily. I am 50 and have PV. I am anemic. Phlebotomies are great to get my hematocrit down, but terrible on my already low iron. What's a girl to do? One source says to take some iron, while another says do NOT take iron.

@kellysc
I have been anemic too. Low energy and low red and white count. My oncologist put me on Ferrous sulfate every other day plus I am trying to eat more foods rich in iron. I made up a mini muffin recipe that has about 21-22 ingredients, most rich in iron and ground flax seed, which helps me deal with the constipation that iron tablets cause. I also take flax seed oil capsules and stool softeners. Have figured out what works for me to deal with the increased iron tablets. If anyone is interested let me know and I can send my recipe for my Power muffins. I usually have to make a lot of them because a lot of people have liked them and they make a nice, healthy gift. BTW, my iron levels are coming back up and I am feeling a little more energetic, although it is hot this summer and that drains energy too! 🙂

@esperanzam
Thank you for your response! I would love the recipe.

@kellysc Do you think I should post it here? It is a one full page document.

@williamsjen
I had ET long before COVID. They tell me the ESSENTIAL THROMBOCYTHEMIA is just a genetic mutation. I have asked questions about its origin or reasons and I don't think they know all the answers yet, as with many other diseases. But, I do think it is odd that about a year before I was diagnosed, I went to Caracas and had a respected vein specialist do a chemical treatment on my varicose veins. Did that have anything to do with altering the blood makeup in my body? The doctors I have asked have all said no. But in the back of my mind, I still wonder. I ultimately believe God is in control and I am grateful for all the good medicine and doctors I have encountered along the way. I do believe that I am expected to do all that I can to do my part in taking care of my body and being here as long as the Lord wants me to do His work. We had to leave the foreign mission field but I still serve the Lord here in my home church and beyond. May God bless each of you in your endeavors to take care of these things and give us all better, more productive years ahead. I would like to see my great grandchildren grow up (7 and 8th on the way). God is good.
BTW, I never took or have taken a COVID vaccine. I had read about the blood clotting problems and I already have plenty of that. They are still trying to offer and convince me to take one at my pharmacy but NO. 🙂 I DID have COVID in January of 2020 but my symptoms were pretty mild and so similar to all my other condition symptoms (like IBS, lung problems and asthma, that it was only after my husband got sick and tested positive with Covid that I thought maybe I had it too and went to be tested. We just both quarantined and waited it out. Him being a diabetic and Vietnam Veteran, will not take the vaccine either. So sorry that so many were forced or coerced to take it. So far my natural immunity has served me well.

@williamsjen
I had ET long before COVID. They tell me the ESSENTIAL THROMBOCYTHEMIA is just a genetic mutation. I have asked questions about its origin or reasons and I don't think they know all the answers yet, as with many other diseases. But, I do think it is odd that about a year before I was diagnosed, I went to Caracas and had a respected vein specialist do a chemical treatment on my varicose veins. Did that have anything to do with altering the blood makeup in my body? The doctors I have asked have all said no. But in the back of my mind, I still wonder. I ultimately believe God is in control and I am grateful for all the good medicine and doctors I have encountered along the way. I do believe that I am expected to do all that I can to do my part in taking care of my body and being here as long as the Lord wants me to do His work. We had to leave the foreign mission field but I still serve the Lord here in my home church and beyond. May God bless each of you in your endeavors to take care of these things and give us all better, more productive years ahead. I would like to see my great grandchildren grow up (7 and 8th on the way). God is good.
BTW, I never took or have taken a COVID vaccine. I had read about the blood clotting problems and I already have plenty of that. They are still trying to offer and convince me to take one at my pharmacy but NO. 🙂 I DID have COVID in January of 2020 but my symptoms were pretty mild and so similar to all my other condition symptoms (like IBS, lung problems and asthma, that it was only after my husband got sick and tested positive with Covid that I thought maybe I had it too and went to be tested. We just both quarantined and waited it out. Him being a diabetic and Vietnam Veteran, will not take the vaccine either. So sorry that so many were forced or coerced to take it. So far my natural immunity has served me well.

@esperanzam thank you for the words of encouragement. I don't think anyone know the origination of the ET but, my platelet counts were always good until the year after I had the Covid shot. It was a Government requirement. I was always healthy. I cannot complain as I do well taking the Hydrea and the asprin every now and then as I have been blessed with no blood clots. Its just the taking medicine issue as I never took medicine. I just pray to be around to see my grandchildren grow up as I just retired after 43 years with the Government and my oldest daughter is pregnant with her first child (baby boy) at 35 years old. I want to keep him until he is old enough to go to school. I loss my husband at a young age 5 years ago then my mother who lived a good life at 95 years old and took one pill 5mg blood pressure pill 2 years ago , so being diagnosed with a Blood Disorder really set me in a bad mood. however, I am trusting in the Lord that I will live a good fulfilled life. Thank you for your service, my husband was a vet.

@kellysc Do you think I should post it here? It is a one full page document.