Hello my MPN borders and sisters.
Just a question about VitK2. I was told when I was first diagnosed with ET Jak 2+that whatever I do not to take Vitamin K and I understand that. What is difference between vitamin K and vitaminK2 if any and how this my or may not affect me as ET patient?
Recently was suggested to me to take high dose of D3 with K2.??
Wishing you all well.
Hi light I only know that K2 helps with the absorption of Vit D3. I take Vit D3 and have done for years at the advice of my GP and Haem, but I don't take K2. It may be a good idea to speak to your Haem as I believe Vit K2 does play a part in blood clotting.
Better only vitamine D3 with oil without K2 or K.
Your question piqued my interest and got me wondering about the D3 vitamins I have been diligently swallowing since we were all advised to take them to boost our immune systems. I did some rooting around and ended up with more questions than answers!
1. There appears to be debate around whether Vit D3 should be taken without Vit K2 in relation to bone health given the risk of plaque build up in the arteries. (K2 apparently being more efficient at moving calcium around the body to where it is actually needed). Hmmm. Should I be taking my K2 free D3 supplement at all??
2. Is there a difference between K1 and K2 in terms of their coagulant properties? K1 is a definite no, no for people like us. But K2? The advice is not clear and often contradictory. You can’t take it if you’re on Warfarin but there are no interactions with aspirin - in normal healthy people. Er, that’s probably not us
3. Where’s the fine line to be drawn? D3 to boost the immune system (and bone health) - but possibly clog the arteries? K2 to counter the effects of D3 (or at least make it more efficient) but potentially increase the risk of clots?
I’d certainly appreciate some advice from experts in this area.
I think its one of those questions were there is no conclusive answer.I was recommended vit d with k2. And happily take it .
Thanks, but what is the situation with your blood/ET/PV clotting??
I havnt had any problems with clotting blood . Got JAK2 POS . was diagnosed after platelets rose over many years.
I always ask my alternative practioner before taking any suppliments.
What's good for me may not be for someone else.
So much contradictory info. In books and Internet.
Feel lucky to be able to afford seeing someone . And being able to work to fund it.... ( lot less than I used to )...
Ditto your thoughts Ebot!
interesting - I have taking Vit D without the Vit K due to the fear of extra clotting, but haven't looked into the different K's - does anyone know of a nutritionist that has experience of working with people with MPNs? I have discovered a couple of cancer specialists linked to nutrition but their specialism is breast cancer so it would not be feasible for them to take me on - atm I am managing my PV (diag 5 and 1/2 years ago) only with aspirin and vene, with the view of being as healthy as I can with a combination of natural and alternative health modalities such as ayurveda, NAET (natural allergen elimination technique) massage, reiki, homeopathy, and daily ceremonial cacao, my counts are high but stable and I feel extremely well, but feel that fine tuning my (already health concious) diet could also be a big help - and of course have cut right down on caffeine and alcohol and upped the water intake, I have found weight training to assist massively with the fatigue I was once facing. For itchy skin with bathing also try massage with organic body oil, prior to bathing or shower - and in a hard water area you may also take a homeopathic hystamine remedy - this is a life save for sea swims too - just pop a tiny pill before immersion. I hope that these tips may help some of you out there, sending Love and Light to you and us all. Sarah
Hello Sarah . What is daily ceremonial cacao.?
Hi Mostew, The cacao I take is deemed to be 'ceremonial', to differentiate it from cacao powder that can be bought say at H & Barrett or other health food shops; it is made from heirloom cacao trees, from which 'chocolate' is derived, and yet for this ceremonial type, the cacao pod beans that are naturally fermented and roasted in the sun, rather than heavily processed and then added to other ingredients such as sugar and dairy in the making of chocolate - in folklore cacao is known to be the 'food of the Gods'. In modern terms it is full of natural ingredients that can assist with energy levels and balance in our being. The cacao paste (which comes in block form) is chopped and taken with water or plant milk and to mine I add spices which have anti inflammation and circulation properties such as cinnamon and turmeric and sweet paprika plus a small pinch of mineral salt such as celtic sea salt or pink himalayan, the nett effect is that its a 'heart opening' plant medicine - assisting vasodilation throughout the veins and capillary networks - and also with it not being processed contains still valuable trace phyto nutrients, as well as plant-based iron, Vitamins, magnesium and copper and many more trace nutrients that are now deplete from our soils, such as selenium as one example - it also is a natural anti-depressent as it inhibits some of the enzymes that actually deplete our feel good hormones, as we age, such as serotonin and dopamine - that said it is IMPORTANT to note that cacao is not advisable for those taking certain anti depressant medications; and also it may not be compatable for those taking medications for their MPNs, which of course many of us are, so do check with your haematologist. At the moment I am not, but it's a possibility for the future. Like all of us it's weighing up the balance of what works for you at your time of life, vs the obvious risks of carrying a high cell burden. I take the cacao around 5 mornings a week, and combine with meditation and gratitude practices as part of my holistic lifestyle - I would be happy to answer any additional q's but please remember to check if you are currently on prescribed meds. I would be interested to hear from any others in the group that are benefitting from natural health practices or support. Thank you for your interest Mostew.
Great explanation...also to hear of your practice to stay as well as possible, in mind as well as body .I think people get confused between cacao and cocoa
I do get the sort you mean. Just not that one . Organic unprocessed etc
Can't imagine Heamatoligosts would have a clue about safety of using it!!!!!
Keep up the good work .
Ha ha, I think that you are quite right most of my doctors inc haematologists think I am a little 'out there'.... that said, they are also bemused that my levels have been pretty (high albeit) level for such a long time, day by day I keep putting one foot in front of the other and being the very best/healthiest and most positive that I can be and I think for all of us, despite perhaps some different approaches to managing our array of conditions - pos+ mindset HAS to be the very best medicine. Often, I actually 'thank' my condition for leading me to a happier and more fulfilling lifestyle, crazy though that may sound. It's looking at things with a different perspective for sure. I wish you well on your path less travelled too Mostew, and a healthy outlook at all times 
I have taken K2 with PV for at least 5 years, K1 is a no no for us, watch the quality and dose, I use Mercola but it’s v expensive, always check with doc first, although most docs just say don’t take any vits which keeps them in the clear but may not optimise your health
I had been taking high doses of vitamin D3/K2 during the early covid epidemic. I had not gone in for any blood draws during that time and I believe that I was already positive for ET and didn't know it. When I went in finally for thyroid blood draw, my blood was like paste. I guess I was lucky to go in at that time for routine thyroid workup to say the least. I have not taken any D3/K2 since- only D3.
Just want to check you got my private message re. Practitioner? (Just in case for some reason you havnt )
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