41 yr old female diagnosed 5 months ago with PV & wondering if there is anyone else also diagnosed & trying to find info on healthy items to eat & not to eat with this disease. I've been told 2 good things to eat/drink are purple grape juice (the real stuff, not juicy juice) & kiwi fruit. Also been told to stay away from red meats, organ meats, p'nut butter & broccoli??? Anyone else have any info or links etc to share & help? Thanks in advance!!!
Polycythemia Vera - Newly diagnosed?
Question posted by lilmizdiz on 28 Jan 2014
Last updated on 8 October 2020 by DaVinci314
7 Answers
DaVinci314
8 Oct 2020
Patients with Polycythemia/Polycythemia Vera should try to avoid eating an increased diet of spinach, as well as other foods with high vitamin K, as this can increase the chances of thrombosis, further increasing the chances of stroke, heart attack and/or PE. Many patients with Polycythemia/Polycythemia Vera display elevated ddimer, appt and ptt levels after eating food with high vitamin K.
61nonaital
4 Sep 2017
I am 64 years old, female and for the past three years have been living in terrible pain. I've been managing with Tylenol, and my health is generally good. June I decided I was going to try to lose 50 pounds. I started swimming which took me three months to get up to capacity. In July I went for my physical and my doctor sent me to a hematologist because my HCT levels went from 40 to 45.7. I never thought twice about all the symptoms I was having believing it was my first diagnosis of MS. I will have confirmation of my diagnosis on the 11th. I've been told by my doctor at the cancer center that they would start me on the with drawl of blood. I have read quite a bit of information on this particular blood disease, but I am wondering what foods I should avoid. I have never been able to take any supplements that have iron. When I do I am in pain. I'm kind of a person who always prepares.
One is sensual question that I have is should I have someone with me the first time they take the blood from me? Can someone please give me an answer as I cannot seem to find that answer via the websites.
Ms Nona
3 Jan 2017
I was diagnosed 17 years ago. I always ate clean but I was warned to stay away from any supplements containing Iron, B 12, B6, magnesium, ginseng, since they thicken the blood. What has helped me is OPC-3 purchased from health care professionals and independent distributors. Instead of every 3 weeks of painful phlebotomy, it was extended to every 6 weeks then 8 weeks. Right before treatment, my body craves red meat. My nutritionist told me, that even though I have too much iron, the iron is toxic which is why my body is craving it.
I never had good veins and after so many years of treatment they are shot. If anyone has this problem, bring a heating pad and heat your arm. Heat makes your veins plump out for an easier treament and plenty of fluids and no salt for 5 days prior.
valentingrasso
24 April 2017
Bro research better !cuz iron deficiency can cause thrombosis too.
anoble86
28 Aug 2016
I am 30 years old and i have been battling PV since I was 5 yrs old and my brother has been PV since he was 18 months. I used to have Medicaid and was able to keep up with my therapeutic phlebotomies, but these last 2 years I have lost Medicaid and haven't had a treatment. My hematocrit is at 67% and my hemoglobin is a 21.7! Is there anything I can do to help lower my iron/hematocrit levels???
TimAndPatti
16 Nov 2017
My husband who is 67 has polycythemia vera. The Dr. was taking a pint of blood every 2- 3 weeks plus he was taking aspirin each day hoping his body would finally get the message that it didn't need to make so much, this wasn't helping. The only other option was blood thinners or chemo pills which we refuse to start. I did my research and found what has helped other people with PV and prayed it would help my husband.
I started him on the items below to naturally thin his blood. I am not a Dr. I just spoke with others using this protocol online and it works for my husband so far.
NOW Foods Ginkgo Biloba 120mg, 2 per day, 1 AM, 1 in PM
BLUE ICE Fermented Cod Liver Oil, 2 per day, 1 AM, 1 in PM
Life Extension Natural Vitamin E, 2 per day, 1 AM, 1 in PM
Pure Encapsulations - GarliActive - High-Allicin, Odor-Controlled, Buffered Garlic Supplement 2 per day, 1 AM, 1 in PM
Arthur Andrew Nattokinase 2 in the morning on empty stomach 1 hr before eating and 2- 1 hr before supper on empty stomach with full 8 oz. glass of water.
kiwifruit417
1 May 2014
I am 31 yr old woman and also have pv. Avocados and red grape juice have helped me. Also, I noticed when i would eat a lot of asparagus, my cbc stats would suffer, so i would stay away from that. Also, be aware that restricting your iron intake too much, can cause a platelet increase.I learned that the hard way. My platelets went to 1.3 million. Good Luck!
aramanarao
1 Feb 2014
Hi. I am 61 year old Male diagnosed with PV three years ago. After going through many THphebotomies, I was put on Hydroxyurea and for more than a year now, I have not gone through a THp. I have not been given a diet restriction as such but alternate systems of medicine recommend that Pomegranate and a decoction made from the peel of the fruit in hot water and purple grape squash/juice may be consumed for reducing the PCV to below 45. The restriction on red meats, organ meats, etc could be because of some other condition that ails you.
kaismama
1 Feb 2014
Thank you for your answer, because it backs what I said. I knew I was never taught there were diet restrictions.
kiwifruit417
1 May 2014
I was put on diet restrictions. My Dr. said to avoid eating foods with more than two percent of daily value of iron, to reduce rbc count. My hemoglobin was more than 19. It took three hrs to drain the first pint of blood from me and it was clotting in the bag as they took it, so they do restrict diets. You shouldn't be so quick to say, see. . . I told you, because you're wrong.
kaismama
28 Jan 2014
PV is caused by your bone marrow malfunctioning. It has nothing to do with your diet. You should eat a, balanced diet and get plenty of fluids. Don't cut things out of your diet unless your dr tells you to.
lilmizdiz
31 Jan 2014
Okay obviously I wasn't clear in my question. Believe me I am fully aware of the cause of PV (JAK2 etc) as well I know I along with everyone else in the worlds population, we ALL should eat a well balanced diet. I was asking if anyone knew of foods to AVOID... as in my Dr. said to avoid RED MEATS, HIGH PROTEINS, ORGAN MEATS etc due to these can cause your red blood cell production to increase. Or if anyone knew of foods maybe their Dr's had said were GOOD for PV patients. I've been told Purple Grape juice & Kiwi Fruits both help the viscosity of your blood. Anyways if there is someone with helpful information, I am forever grateful!
Annie20142014
7 Dec 2014
I also have "pv" and I have had it for about 7 years, I was diagnosed at 33. I take hydroxyrea. The only thing I do is exercise as often as I can to keep my blood circulating well. They say spinach is high in vitamin k which can promote thick blood. I don't make a point of not eating anything. I try to stay as healthy as I can with exercise and diet. My lifestyle hasn't changed much since I was told I have this. As long as you take your blood thinners life is great:)
valentingrasso
24 April 2017
hello im Valentin from Argentina, my mom was diagnosed with PV. Is there a blood thinner in nature better than aspirin? or a diet that thins the blood to prevent clots and thrombosis? I know that PV refers to a gene mutation and it CANT be mutated again to a properly functioning gene.
So what is due I can guess ,is to try to keep tha consecuences of high volumes of red blood cells travelling your blood stream. Is this a task for DRUGS or a diet¿ ?
A liver and spleen strengthening and cleansing diet to revitalize their functions, as well as aiding the heart and circulatory system. Eating consiously towards a clean and healthy blood (eventho we have a high volume of red blood cells , we can have a healthy high volume of red blood cells puls all the other blood components) This is possible puls a diet of naturally ocurring blood thinners.
I am going CRAZY ? should I call MAYO Clinic and start their treatment for PV, and stop trying to resolve by myself my moms rare disease? Should I turn my back on Nature and start believing in doctors and their approachs and ways?
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myeloproliferative disorders, polycythemia, polycythemia vera, blood disorders
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