I was diagnosed with polycythaemia vera a couple of years ago at the age of 61 and have been on daily low dose aspirin and regular venesections since then. I started off with weekly treatments which then reduced to monthly and for the last year I have been getting blood tests every 3 months which always leads to me needing to have a venesection. Two weeks ago I had a venesection as a result of my hematocrit testing at 46.2% two weeks previously. I asked the nurse if I could have a blood test after the treatment as I had no idea how much the venesection reduced the hematocrit. I thought that it would be good to see the variation over 3 months. I got a shock when I received the results this morning, I now have a level of 46.5%.
To me this indicates two possibilities, the first one being that my blood is staying around 46-47% throughout the 3 month cycle I have been working on and the venesection is not making any difference to this level. The second one being that in the two weeks between the test and the venesection my level had risen to some higher level and the venesection had only managed to reduce it to just above the level it had been a month ago.
Does anyone else have blood tests after they have a venesection? How long after do you have the test? does it bring the level down substantially or only a little?
Since my symptoms of itchiness, tiredness and loss of sleep through a foggy brain seem to be just the same after a venesection as before I am wondering whether I need a different treatment. I am reluctant to start taking drugs that could lead me towards complications and leukaemia. Has anyone found help through acupuncture, reiki or other forms of natural healing work?
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reliabletony
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Interesting to hear your story. I was diagnosed a year ago at 51. I too are on daily aspirin and just the odd venesection. I've always steered away from all kinds of drugs and used natural methods (with thousands of years of documentary evidence like ginger for colds, mint for upset stomachs). I was shocked at the medical establishment saying there was nothing I could do myself although hematologists said there was a connection with hydration and red meat (as it produces red blood cells). I immediately changed lifestyle and went on a very healthy low inflammatory diet with the help of a Medical Herbalist. I changed my hemotologist and I refused venesections to start with and my hematocrit started to lower by itself!!!!! At Christmas my diet and exercise went slightly astray and my hematocrit rose. I did experience more symptoms and so had two venesections 2 weeks apart. That was back in March. Nothing since and now 2 monthly blood tests which has stayed at 43%.
What is really incredible, is that no one seems to be remotely interested in my case!
I do experience itching and certainly if I bathe in the morning it's much worse. Evening is fine!
No other symptons and I have never felt better. (I did however experience lots of symptons at the beginning).
There is one amazing book I've only just read that puts together the "natural" view, encouraging the body to right itself and the western medical view written by a doctor who discovered he had a brain tumour who was initially very sceptical about anything alternative. I've been doing most of the stuff in the book with my herbalist a year before reading it but it really is essential reading. Anti-Cancer-a A New Way of Life by Dr David Servan-Schreiber.
It's good to know I'm not the only one who wants to do everything possible to work with their body and not against it. Thanks for the reading recommendation, Boss1, I'll definitely put that on my reading list.
Hi Reliabletony, I passed your query through to Prof Harrison at Guy's & St Thomas' Hosp for you and she has said - It isn't really standard practice to recheck after venesection. But I would have expected a lower reading at this stage. Probably a bit early to generalise this to all your treatments. I would monitor for a bit longer do some more frequent tests etc. I would certainly expect to see them below target at least some of the time. I might also ask about dietary iron. I hope this helps you with your decision on how to take your treatment forward. Kind regards, Maz.
Thanks for seeking guidance, Maz. I will be doing more frequent tests from now on. As a vegetarian of long standing I don't think I'm overdoing the iron and am not taking supplements with iron in them. Does anyone else have any suggestions about lowering iron. Have they tried it?
I get a blood test every month and small venisections of 125-150ml when I need them, my experience is that it can in MY case it can take a week or two after the venisection to "settle" to get the correct Hct reading. My advice would be to test two weeks after venisection, also if possible get it done at the same time of day as that matters for hydration reasons, also try and have the same amount of water before each test as it seems to make a difference, also there can be a bit of variation in hct anyway, so don't panic on one reading get a few before drawing any conclusions. Also watch your iron consumption , this can make a huge difference, no multivitamins with iron and watch out for high iron foods or cerials. If they test your blood before a venisection make sure they take the blood BEFORE starting blood letting, IT MAKES A DIFFERENCE. I always get my bloods checked only at the haem clinic , not at the venisecting ward, they use the same lab but for some completely bizarre reason the readings are different at the clinic to the readings if they take the blood at the venisecting ward and pass it to the same lab, I explained this to my haem and we agreed only to take the blood for testing at clinic only. You mention your a bit foggy and thick headed and tired etc, so am if I have my Hct at 46 or 47 whereas at 44 I am okay. The gold standard appears to be under Hct 45 for males and under Hct 43 for women to minimise thrombotic risk etc, everyone is different , I used to be fine at Hct 47 but not now, so maybe experiment with it before jumping on to meds if that's your preference. For itch I use UVB approved by dermatologist, this reduced my itch dramatically, Acupuncture can help but essential to find a good qualified one as plenty of chancers out there.
good luck and keep reading , knowledge is essential, most haems will keep you quite healthy as that's their job but only you can "optimise" how you feel but with their help of course
Hi, I've never responded to any of the posts before on this forum but today I feel as though I have to as I feel the same as Reliabletony. I have spent time desperately searching for some kind of alternative for my PV, with not much success. Today I have been placed back on hydroxy after three years of just aspirin and venesections and I cant help but feel so defeated. I am now anaemic and I have had to give in as the weekly ocular migraines, fatigue and fuzzy head have become unbearable. I just wish that we didn't have to do this to our bodies, in fact, do we??? Great forum by the way and sending love and regards to you all.
I was diagnosed last year, because i have gastric varices which where bleeding slightly, these where doing the job of a venesection (and more so), meaning i was becoming anaemic and iron deficent over a period of time.
I would for spells be put on iron supplements, which with my PV as you can imagine pushed my HGB up rapidly, once it got to a 'normal' level i would stop this, and then wait for for my counts to drop over time because of the bleeding.
In january i started a sustained period (and continue to do so) of 'natural' remedies and have done well since, my next results in march showed i had pretty normal counts, and have remained normal since then (last results august).
I will be getting my next results in October so hopefully will still remain the same.
I dont know if its what im doing, it could be that im still bleeding but not as much as i was, so that its actually acting as a balancing act rather than pushing me into anaemia / iron deficency. My ferritin levels have remained steady too which would be odd if i had bleeding (albeit low end of normal).
Im having an endoscopy sometime in the next month so this will tell me if i do still have bleeding.
I wouldnt advocate starting any course of treatment with speaking to you haem first, but am happy to share what im doing if you want send me a private message.
Hi Guys, every sympathy re foggy brains, itchiness, fatigue, etc. I have PV and was doing well just with venesection. Went from June last year until May this year without venesection and then I seem to be needing more again. My PV does not have a pattern to it. I am struggling a bit as before venesection I am fatigued, after venesection I am fatigued for a while because of low iron.
I had a venesection towards the end of August, was great for a couple of weeks, then asked to be tested again after feeling fatigued - hct was .40 but iron is low so guess fatigue must be due to that. I have tried to eat healthier, drink gallons of water, force myself to exercise but when I am fatigued nothing seems to work.
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