Hi I've recently been diagnosed with PV and have 7 venesections which has brought my PCV down to 44 from 61 when I was first seen. However my platlets continue to rise and are now 859 I currently take 75 mg of aspirin a day and are currently waiting to be transference to a specialist on the NHS after my private care finished. My question is, can diet/ exercise contribute to helping lower platelets?
Thanks in advance
Jason
Hi
I dont think there is a magic diet to help reduce them. Good diet, excercise and hydration will help with your general health of course.
If you have had a spate of venesections in a short time this could be causing your platelets to rise, the body produces platelets when it thinks its bleeding, so this could be the cause as your body can think its bleeding when you have venesections.
Paul
HI, I'm "ET's wife" and have also been thinking about lifestyle improvements. As Paul says, no silver bullets, and I think that good balance is probably particularly important. My ET guy is over 60, so that goes double for him as an oldie - if he can't have good health, at least he can have a better standard of poor health!
He's pretty active in short bursts, but not a gym and sports person, so the emphasis is on a good walk on days when he works from home.
Nutrition....I don't (yet! ha!) have a good understanding of exactly what happens to blood iron and other minerals (including sodium/potassium) in MPNs. I noticed recently that my ET has a Kayser-Fleischer ring around his pupils, which may or may not be related to his ET.
I also wonder about inflammation, which is known to be part of MPNs but doesn't seem to be discussed much, so I looked at the arthritis and stroke diet advice too (don't know if it is relevant sorry). I actually *don't* think it's a good idea to do things like switching to a raw diet or gulping down green smoothies, because MPN blood chemistry is probably more delicately balanced than it is for peasants like me. I've been interested in herbs since childhood though no expert - but I wouldn't recommend launching into supplements without advice and discussion with a doctor, because plant-based chemicals actually work, they WILL change your body, and people need to know what they are doing. However, a little garlic, turmeric, and other curry spices on your fish, lemon in your water, honey (sprinkled with sesame or nuts, yum) or olive oil on your toast, a slice or two of fresh ginger in your teapot, a cup of chamomile tea, good cocoa with a dash of cinnamon, an orange or an apple at your desk instead of a bag of snacks - at that level, you are not likely to do any harm to yourself, and a variety of little changes may be healthier than one big sledge-hammer attack on your eating habits.
So far, eating aims that I think would be general enough for all MPNs are:
- plenty of water and tea (in cooking as well as for drinking)
- plenty of vegetables, variety of fruit with his morning yogurt
- more fresh fish (and good chicken?), less red meat (less bacon!!! Ya hear me, ET?) He rarely drinks soda/soft drinks but diet soda is a risk, I think.
- "wet" cooking methods such as green vegetables boiled with pasta or in soup/ soupy noodles, with fried or grilled foods less frequently.
- try taking a packed lunch to work - and think about your workplace drinks and snacks!
I tried with no success, whereas am pretty convinced my red cell levels heavily influenced by the amount of iron I ate. also remember platelets have v short life cycle: about a week and they are replaced i think
Hi Jason,
I have ET - 11 yrs since my diagnosis and a platelets of around 700.
Im not too sure whether diet can contribute to a lower count - id be all over it if it does. I did eat really well for about a month and a half and my platelets didnt move. The only time they go down for me is during an infection - no win there.
Lina
Hi guys thanks for all your advice. It's really nice to have such a wonderful support network just a click away.
Thanks.
Diet and exercise are key in life whether we have chronic illness or not. Unfortunately, for most we discover this a little too late to prevent dis-ease in the body. However, if like us it's genetics then we may never have been able to pinpoint the cause, chemicals etc.. However, I believe in prevention is better than cure, we need to manage our dis-ease in the body. For me personally I spent a lot of money on seeing a kinesologist who checks what I might be needing from a supplement viewpoint, what my body is lacking, any emotional issues my body is holding on it, physical issues too, although many physical issues are caused by the emotional ones, sometimes you don't even realise you have! Sorry gone off on a tangent but for some reason felt this needed to be typed.. my fingers are almost moving without me even thinking! (Don't be spooked that happens a lot lately).. anyway I digress.
When you have a venesection your platelets can go up. Mine can often go up to 900 ish and then back down and go up and down however they fancy. I am also interested in how I could go from one hospital to another within less than a week and have such different readings, well all machines read differently, even two machines side by side could be calibrated slightly differently.. pretty annoying when for us it could be a question to venesect or not!!! So I would always say think about how you feel and listen to your body, if you are still enough and breath deeply you will really know the answer, sometimes we have to quieten the chatter, well I know I do!
Fresh air and exercise always help! 
My story is 42 PV since 35 diagnosed (lived with symptoms for 4 years prior) Bladder cancer Stage 1, Grade Ta since 2014 (2 ops to remove tumours)
Venesection few now and sometimes not a full one, and 75mg aspirin. My ferritin is low, so I know that affects me, but I run, I stick to max races of 10k. I am now a member of a running club Vegan Runners although not the fastest I love being part of a community, however our local group haven't managed a proper meet up yet, 6 of us are racing next month. I used to be veggie, from about 22/23, then I was pushed very hard by family and boyfriend to start eating meat I couldn't do that but settled on fish believing this stuff about my diet affecting me, well fish didn't help and I was finally diagnosed with PV. I kept eating fish, and I really thought they didn't suffer like other animals so I was comfortable with that. I knew a lot about eating more alkaline foods but believed I was doing well as no meat, however, fish is still acidic, not to mention the stuff found in fish today, especially farmed 
so I went back to veggie for a couple of months before deciding to try vegan, 22 years ago it seemed too hard and extreme, today it is the biggest social justice movement and guess what I also found, lots of evidence about plant based foods being better for you and preventing dis-ease, actually reversing type 2 diabetes etc.. wowzers. Anyway best thing I ever did. I have now been Vegan for 16 months. I don't go without anything and the only thing that costs me more is I always buy organic where possible (a must for all but especially cancer patients) and don't drink tap water, oh and I am gluten/wheat intolerant so avoid that and gluten free can be more money... but what price on health.
I also believe as a therapist myself (massage mainly learning reiki) that alternative therapies and relaxation are key! I could write an essay sorry! This is why I am starting a blog.. "Living with Cancer" as soon as I get enough time.
Sorry I better get on with my blog eh!
Love & Light xxx
Hi thanks for your response I definitely feel that diet can play a key role in the management of symptoms. Look forward to reading your blog.
Retirement.. Hoping for lower platelets!
Platelet Count Fluctuations with ET - what to expect, ways to lower them naturally? 
Platelets 
Platelets 
