I have come back from the haemotologist today. After a few weeks of receiving weekly vene sections and a couple of months on hydrea, my polycythemia vera is coming down. Haemoglobin and hematocrit are within the normal range, but my platelet count has gone up by almost 200 points since last week's count. My ferritin levels are low which is expected according to the haemotologist.
I have been reading up on gut health recently; and I wonder if diet can contribute to maintaining platelet counts for people with Essential Thrombocytopenia. Has anyone found that changing their diet has contributed to lowering their platelet count (in addition to feeling less tired)?
Would welcome your thoughts as I have found an interesting article about this as per the following link:
I don’t know about the gut connection but it’s not unusual for platelets to jump up and down by 200, most haems suggest observing the trend in the labs as opposed to one test
It is fairly common to experience reactive thrombocytosis after repeated venesections. In the long-term, chronic iron deficiency can also cause reactive thrombocytosis. Venesection induced iron deficiency caused my PLT to increase by 200.
It is expected that your ferritin and other iron levels would be low due to the venesections. That is the purpose of doing them. Your body needs iron to make RBCs. Inducing iron deficiency reduces erythrocytosis. Unfortunately, iron deficiency without anemia can have its own side effects, including fatigue and loss of concentration.
at the time of diagnosis, I was put on the Autoimmune paleo diet and replenished missing nutrients. I’ve been doing that for 5,5 years. Within 6 months, I was a new person. I also make 24 he bone broth. Goal was to heal my gut and immune system, which sits there. My platelets did go down a bit. At the year point I went organic as much as possible. Benefits to me:
Clearer mind, the white of my eyes are white again, good mood, despite everything, more energy, thyroid function (Hashimoto) restored 60%, lost 25 kg and it stayed off although I eat 50% more calories.
My family and many friends followed suit and they are so much healthier. Best thing is, I can really taste good food now. If I’m in most restaurants, I now taste the burdened food and the chemicals and my body tells me afterwards: ugh. I don’t by absolutely anything processed, except for one bag of natural potato chips a month. 😂 something’s got to give!
Hi Anag, thanks for sharing this! Please could you share a link/website on the specific diet and 'rules'? I'm very interested to look into this!! Great to hear it has been such a profound lifestyle change for you!
I’ve been on the autoimmune paleo since Oct 2017. My family and many friends are now true to this. For me, it’s a diet for life. I’ve modified the diet to fit my intolerances. I avoid all mushrooms, Turkey, even 95% chocolate. I used to eat these usually with wheat and bingo, that lead to the intolerance. My daughter is zucchini and honey intolerant for the same reason.
Only the first few weeks were difficult, till the bad intestinal bacteria was screaming for sugar, carbs! When they didn’t get them they just died and left me. 😂 no more cravings, ever!
I have lots of chopped or cooked veggies always ready to eat. Our breakfast is a small quick stir fry with some fresh minced garlic, parsley (to kill the garlic stink) and either an egg or sprouts, bits of left over meat or chicken or avocado. Lots of good Greek olive oil which I buy directly from the producer 51l a year for us. We use a liter a week at home. We also use some butter and coconut oil. I never used to eat fats! Never! And now I load my food with them. My body learned to use fat for energy instead of carbs and therefore I never get hungry. Not even on a 5 day water fast. My system just uses my own fat and old cells for energy. Very convenient.
We do eat lentils and beans (but not white beans since I’ve problems with them) they need to be soaked first till they sprout a tiny bit then I rinse them and cook them in a small amount of water. Lentils 10 minutes, beans, 20 minutes. This way they are much easier to digest. Rinse. After that, I cook them as usual.
it is important to consume proteins every day. They are necessary for proper metabolism and everything you can think of. We eat only organic meat and chicken and fish. You don’t eat a lot of animal protein, but we eat it regularly. Really small portions.
white potatoes are okay, but do not fry them because cancer-causing characteristics of white potatoes get activated when frying. Boiling and in oven are good. Sweet potatoes are amazing and all kinds of root veggies are great. Cruciferous veggies also very important
I always prepare soups, goulashes lentils red, beet. When these are still cooking, I put them in jars and turn them over on their heads, like when making jam. They seal and This way they keep in the fridge for a long time. We also love Applesauce and the pectin in it helps heal the gut. I make my own Applesauce with organic apples, and basically I cook them for about 20 minutes with a tiny bit of water and then just you read them. While they are still boiling hot, I put the Applesauce in jars and can store it in my cupboard for months. We also throw in some apples or bananas in the pan with olive oil and cook them. Delicious. Just add a little bit of cinnamon, or for a real sweet tooth. Add a bit of maple syrup. We think they’re sweet enough without. I also cook most fruits and make cooked, pears, plums, peaches, apricots. I use a little bit of brown sugar and things like cloves, cinnamon sticks, ginger, whatever you like. Red wine is also good. I make a lot of these when they’re in season and enjoy them for many months. we eat, salad, I cook Mangold or spinach ahead of time that way, I don’t have to clean the kitchen so often and there is always good food to eat
it took me a year and a half to get organised to the point where I’m at. On the average, I don’t spend more time in the kitchen than the average person. I decided cooking is like prayer annd it’s a ritual that I deeply enjoy and I am thankful for every little bit of food that we have. 😁😋 Bon Appetit!
Anag
p s there are gluten-free breads et cetera. The important thing is to stay completely away from GMOs 99.9% of wheat is GMO. It’s been gene manipulated 17 times until the Viennese last year came out with a new gene manipulation. Where the weight survives even horrific drought. Our body doesn’t recognise any of these grains.
My Olive Oil, farmer also has his own ancient wheat that has been planted in his family for 130 years. I am down there in the summer and will bring back 15 kg. I must say I am proud of Greece that half there, wheat production is not GMO!!! The farmers are able to plant the seeds from the plants that they grew. The wheat that most of the world is eating today cannot be replanted! It must be bought from Monsanto.
we always have lots of rice waffles that we use for spreads. When I cook rice, I make double the amount we need so we have enough for the next day. Same with potatoes. It’s less work and less energy wasted.
also, I do 24 hr bone broth which I put into everything Really healthy I simmer 3,5kg organic bones, filter it, add salt (can also add root veggies and herbs and cook for another 1/2 hour for xtra vitamins and flavour remove all, and put broth into jars while really hot and seal, turn over to sterilise, then turn back, cool, in fridge enough for 2 months
My daughters autoimmune problems are gone or better no more dermatitis, her ADD is gone, Asperger is almost gone EBV is much better. Husband psoriasis 1/2 gone after 45 years.
We do high doses vitamin D and keep our nutrients balanced at optimal levels 🙂
now we’re getting rid of heavy metals. Mine are much better, my daughter has more. She was born poisoned with mercury from my 35 amalgam fillings which I got between 15 and 25! It was a tough time getting them out. 2 years of suffering in waves. I’m doing. well now.
I’ve said a lot, but it’s important for those who’d like to know first hand about holistic health.
I was told coconut oil is not healthy and neither is coconut cream but milk is fine. I can't stand meat these days but i eat veggies, fruit, dairy, pulses, quinoa, fish, tofu and eggs. I don't really eat a huge amount either. I do have a sweet tooth but try to limit all chocolate and snacks. I find I'm a slave for coffee. I try not to drink more than 3 cups a day. I use soy or almond instead of regular if I can. I have found that drinking more water helps with the vene section. My other issue is that I have low iron so I can't get an infusion as it'll drive my polycythemia vera up. So, I need to eat more leafy greens now.
sounds like you’re doing a lot of good things for your overall health. Yay! There a huge controversy about coconut oil because a “Harvard professor” came out and said it was bad. It isn’t. There are thousands of studies proving that. I just look at the world population and see that a billion people cook mostly with it and these particular cultures have low cholesterol levels. That’s all I need to know. You can also get fractionated coconut oil which doesn’t get hard when cool.
Coconut oil is pure ketones, which means it’s direct food for our brain. Other oils need to first be converted into ketones by the body. 🙂
If you can’t stand meat these days, listen to your body! You’re so right. I wouldn’t touch anything with soy if it’s not fermented. All cultures that have soy in their diet ferment it first: tofu, soy sauce (careful most are not fermented and have MSG instead!) from the 20 brands in the Korean supermarket here in Vienna, only one is truly fermented.
I use rice milk or oat milk for my coffee. Most cafes use soy milk as an alternative because it froths better. I’ll drink it then once in a while.
Coffee is the highest pesticide ridden food in the world. Please go organic! You’ll notice a difference in a month.
Do the leafy greens. Careful with too much Vit K though. It drive thrombos. In this case stay clear of kale which is one of the highest K ratings. I love mangold, dandelion and other wild greens. A delicious surprise are radish leaves! Don’t throw them away! Same with turnip greens! Cook and add sautéed onions, then add lemon juice, olive oil and chopped garlic. 😀
When I eat foods like kale, spinach broccoli, sweet potato Hokkaido pumpkin,…the thrombos go up. I eat very little of these, but kale I don’t touch. The Vit. K is super high. Same with liver, but I eat a super small amount to get the other nutrients. Wenn liver, ONLY organic. It filters everything out of the animal!!
It's interesting hearing you say this as my haemotologist told me I could eat anything in moderation and not to exclude anything from my diet. My GP, however, has advocated for an anti-inflammatory diet full if vegetables, fruits, legumes and pulses and the occasional fish. She didn't say which specific fruits/veg to eat or avoid so your post is very interesting but would mean I have to avoid some foods I love like pumpkin etc.
I wonder if getting covid a few months ago drove my polycythemia vera up and hence led to three months of getting weekly checkups and vene sections. I would like to think I will eventually get my strength back if I stick to a healthy diet and stress less etc. At the moment I can barely keep a train of thought.
My normal routine at the moment is: I wake up in the morning, organise my kids to go to school, run afew errands and maybe take the dog for a walk; then I feel like I'm fading at lunch and need a nap.
Up to about a month ago I used to work full time on a project but my condition worsened when I was put on the Hydrea, which took me about a month to get used to. I had to leave my work as I have literally no energy. I am really frustrated with my lack of energy as I'm 41 and feel I should do more without feeling so drained around midday. I have started taking an effervescent tablet in the morning with zinc, vitamin b and c which gives me some energy for afew hours until lunch. I just don't want to feel like my life will go by and I won't be able to get back to what I want do.
I just want to feel like my normal self before I got this horrible diagnosis. If it's not the ET it's my iron or both. Thanks for your help with my question.
thanks. So many have asked me to, but there are many books out there. Paleo mom is a good free website. But still, every person is completely different and there are different needs! This is why I do the Palio diet, but have adjusted it to my particular needs. This was done after blood test, confirming nutrient, deficits et cetera. As soon as my body was free of chemicals and additives in a couple of months, I am able to taste what is good for me and what is not. Too many years of eating supermarket food and produced products cause my senses to be numbed and we can’t tell the difference. We actually learn to love the chemicals like MSG. These things cause addiction
I too felt like a whole new woman after correcting my deficiencies. My ET doesn’t bother me at all. The 2 books that helped put me on the right path were: Deep Nutrition by Catherine Shanahan MD and Nutrition and physical Degeneration by Weston Price.
Shanahan is good I don’t know the other! We need to get our bodies back. They’ve been kidnapped by the food (chemical) industry. How did we get this far!!!!? Have a great weekend!
wow, Anag, thank you so much 🌸 My mind boggles to think of how to get
My head around such changes. I eat GF as
I have a wheat allergy , found that out 3 years ago when I had an anaphylactic episode overseas. Quite scary and another one after my 2nd Pfizer vaccination, another day in hospital. We don’t eat processed foods tho our food is quite plain. Now we r back from overseas, I would like me to learn to eat like the Mediterranean diet and more simple traditional foods. I really appreciate all you shared. I see I have much to learn 🤩😊 Thank you 🌼
I edited my last response. I was dictating and then didn’t check. Also added some new info. One can only start step by step! And enjoy. Don’t be afraid to add herbs and spices!
So happy you’re off gluten and don’t buy processed foods. The food industry is a chemical industry. We’re wondering why 50% of children have so many allergies, intolerances and other auto immune problem by the time they are 10!! I hardly know any really healthy kids. 😑
after 2nd Pfizer, I got leaky veins, discoloured calves and feet, became increasingly brainless. extreme fatigue and ferritin/iron deficit. Being a Greek there’s lots of iron in my diet.
my bio resonance Doctor diagnosed the Pfizer as culprit and removed the spike proteins in 5 sessions. I then got Covid. my family (vaccinated twice and thrice) we had the same outcomes, we were fine.
After Pfizer, my husbands best friend, cardiologist, venous bleeding in his brain, my neighbour, stroke, my brother Bell’s palsy. my best friend in Michigan, who is a friend of one of the peer reviewers for Pfizer, heart problem after 4th Pfizer, same with her son who is 25.
The Covid vaccines helped in many ways but it they also did a lot of damage. Covid was a terrible time for the world. the biggest damage were the lockdowns for the young people and families. Especially those living in small quarters.
I was concerned about the fluctuations in my platelet counts. When I spoke to my hematologist about it, I was told it's normal, that I can have blood drawn and get a certain platelet count, take a walk around the block, then have another blood draw that shows a big jump or drop
if you stick with a Mediterranean diet. Few carbs cut out sugar . No red meat . Basic healthy food no additives. No alcohol maybe odd glass red wine it makes a big difference to your energy & no bone pain or aches . None dairy . Use alternative s like almond milk.
I have stuck to this for a year & feel very fit and platelets will rise as nothing can stop that but slowly which my interferon then controls . Worth the sacrifice of junk food & additives to feel well 👍
excellent! But careful, the Mediterranean diet has to be identified: Italians eat tons of wheat. The Greek, Türkisch, Israeli, Palestinian, Portuguese diets are great. Whole foods and lots of herbs and spices! Who needs sugar?
There is research evidence to suggest that following the mediterranean diet can reduce platelets. However it must be followed quite strictly. I follow the M diet and my platelets are creeping up but they are manageable. I also find during times of stress my platelets shoot up. Like when I went to A&E for something else. Good luck.
stress was for me the number one platelet driver. Since doing trauma therapy on my own and reading and living the Bible now for 14 years, I’m finding balance in my life and my stress is down by 70%. My thrombos are no longer on a rollercoaster. 😁
thank you so much for your lovely reply faith! I am always happy to help and always pass on knowledge when it comes to me! 😀 I also learned from others who are an inspiration to me. We are very blessed.
I don't have any insights to respond to your question, but just wanted to say congrats on your progress to date. I travelled a similar journey from Nov 2022 (diagnosed with PV Jak2) through March 2023, when I finally got those data in range. Now we're tweaking the HU dosage for the longer term. Appointment cycle was moved from 1 month (had been every 2 weeks prior to last one) to now 2 months. Must admit I'm a little nervous about waiting 2 months for next check, but I do have total trust in my doc.
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