Was at the Christie yesterday I’ve been taking vitamins to help me with joint pain and fatigue I got a telling off regards taking Turmeric yesterday it interacts with medication and shouldn’t be taken with blood thinners or hydroxycarbamide
Also I had been taking Ginko Biloba told it interacts also and can make you feel light headed
He told me to cut everything out and rely on a balanced healthy diet
The Turmeric actually lowers platelets.
Regards
Phil
Yes it's always a debate. My personal view is tumeric helps. Gingko is definitely favourable but need extreme caution BUT only when you're not taking aspirin or blood thinners & also taking lower dose (I think it was 300 mg & 600 mg getting too high) as it can have serious interactions & side effects.
I think the reasoning behind antioxidants is that we need a certain amount of free radicals (harmful stuff) to activate our natural killer cells to hunt out unnormal cells & destroy them. So if taking very good efficient antioxidants they would halt this process.
Bit tired so I hope I made sense.
Hi. Someone posted a medical article in the past week or so about Tumeric (& curcumin which is the same thing) affecting platelet levels. Lots of people thinks it’s great because of its anti-inflammatory aspect but it really can affect your platelets. These so called natural supplements are considered safe by many because they’re “natural” when they may not be depending on your health issues. They can be as potent as any drug. Luckily you have a wise doc. I’d not heard about gingko biloba. Katie
While turmeric is perfectly safe and a wonderful spice, it isn't as useful to your system as its prized extract, curcumin. Turmeric is a plant. When most people refer to turmeric, they are referring to the spice which is made by grinding up turmeric root. ... Curcumin is a compound that is found within turmeric.
Hi I’m under Professor Sommervaille he wasn’t happy at all told me to cut everything out vitamins and herbs he said can be dangerous interactions
Thanks for this. Was wondering about complimentary therapies.
Hi
I’m still trying to not take hydro. So taking high dose of various natural remadies under supervision . Been told I can definitely still take Reishi mushroom if I take hydro , safely . Don’t know about rest .
It’s not helpful to feel you are being told off is it .
I take turmeric for joint pain too. Glad to know it might help reduce my proliferating platelets. Sorry you have been told you can't take it. I'd like to go back to taking Gingko but I am taking so many supplements already. Thanks for your post.
Hi I’m on blood pressure medication heart and VK penicillin also statins and allopurinol and pantroprazole along with 1500 mg daily Hydroxycarbamide he said they interact with my medication and can be dangerous
Better to be safe than sorry!
Know the feeling of taking to many supplements ..., just stopped Ginko as I’m wondering if was causing my head to go ‘ funny’ hasn’t happened since stopped a few days ago. So hard to know what causes symptoms .
Hi
Are you still taking tumeric?
Are you on hydroxycarbamide?
Hi, I am only prescribed aspirin and am out of turmeric at the moment. I am taking cloves and cinnamon. Still too many supplements. My bloods continue in the same directions - haem down and platelets up but "stable".
My husband is doing a calorie count daily so far he's lost 8lb .
He's also doing dry January he gets his next bloods taken a week today so it will be interesting if some of his bloods come down .
Diet plays a massive part to your mood and bloods .
I'm so proud of him as he hasn't ever achieved dry January as yet.
Let's hope 2020 is his year 😂😂
TRACEY
PhillReade, research boron, magnesium, selenium and vitamin K2MK4 plus vitamin C for your joint pain. Use liposomal vitamin C as it is active far longer and has other benefits in addition to being a JAK2 inhibitor. Ten to fifteen ml three times a day. Look into selenium from the non-GMO Saccharomyces cerevisiae yeast strain. You'll need 600 mcg a day. Boron is usually found in 3 mg tablets. You'll benefit from 12 to 18 mg a day. 45 mg of K2 MK4 is needed to activate the protein matrix and is best absorbed with a fat. Magnesium glycinate & taurate are well absorbed and enhanced with boron. Magnesium also prevents platelets from sticking together. Use a B complex supplement. You'll need folate when taking HU. Become very knowledgeable about B1(thiamine). The amounts of all mentioned found in the typical diet are insufficient for sustainable health let alone elevated needs from malabsorption. Also research them as they apply to your diagnosis.
My partner (ET JAK2+) is on HU and takes no supplements. Platelets are in normal range and no symptoms.
Osidge, ET is going to progress. HU is palliative care to control high platelets that one day will nose dive becoming mylofibrosis then to secondary acute myelogenous leukemia. At least take advantage of Liposomal vitamin C as a JAK2 inhibitor using 15 ml three times a day along with 600 mcg a day of selenium from the non-GMO Saccharomyces cerevisiae yeast strain having the potential of putting ET in remission. My wife's oncologist never told her about progression while she was on HU and then Anagrelide. Now she has myelofibrosis. I wish her current protocol could have been used while she was treated for ET.
HU is certainly not palliative care. I am sorry that your wife now has MF but everyone’s journey with ET is different. Not everyone will end up with leukaemia! As to the Vit C and selenium, they are antioxidants and I am not sure how they will effect genetic change.
Why do you say take folate if on hu? And what dose?
130396, in this link under history is reference to folic acid. I encouraged folate in the place of folic acid. In this link leg ulcers is mentioned. Using the vitamin C, especially liposomal, along with other collagen builders is a good step in prevention.
Now I understand why my consultant was not too pleased by all the supplements I was taking. It's not that they are a problem right now but they may be a problem if I ever go onto any medication other than just a little aspirin. Thank you.
If it’s ok to take them now why would consultant not be pleased ? As long as you check what’s ok to take in future if necessary .
I find it so hard to talk to consultants as they Havnt got much knowledge of supplements to compliment conventional treatments.
Well, there's a possibility that one of them might affect blood counts and give a different result than what it might be without taking anything. It might just complicate things, and yes, they probably don't know much about them.
Yes it’s Turmeric
This is a really interesting and helpful thread. What I find so interesting is that we're told to stop taking the natural remedies as they interfere with the chemical ones. What if we were told that the chemical remedies interfered with the natural ones?
I'm not saying we should switch without any consideration, of course! But it struck me that this is a question I'll be asking my MPN specialist.
What if.... I love the curiosity of the folk on here, that we refuse to blindly accept, that we research and learn for ourselves.
I've not had the vitamin/ minerals/medication conversations with my new consultant so this is on my list now. My previous haemo was fairly disinterested in anything to do with diet, exercise, supplements other than saying a healthy lifestyle is good.
I know when my diet is low in sugar, high in green veg and loads of water that my fatigue, brain fog and pains are massively reduced, but it doesn't have a significant impact on platelet levels.
Huge thanks to everyone on this thread and others. What a forum!!
I've ET, diagnosed 2012, on 1000mg HU daily, and aspirin. I'm 62 and had a couple of TIAs hence HU dosage.
Liz
Hi Lizzie
I’m on 1500 mg daily I’ve had a splenectomy and got high blood pressure and enlarged left ventricle I suffer greatly with joint pain
I’m having Accupuncture to relieve that
But I take VK penicillin daily 1000 mg
Pantroprazole x 1 -40 mg
Them amlodipine 10 mg
Allopurinol x 1 -300 mg
Apixaban x 1 morning
Then hydroxycarbamide x 1500 mg
All in morning
Then night time other half of VK penicillin
Apixiban
Statin
Irbesarten x 150 mg
He said they interact with Blood Pressure medication and hydroxycarbamide as well as my irbesarten which was dangerous
I was told the same about Turmeric sadly
Xarelto (blood thinner) and hydroxycarbamide
Dental Fillings and Hydroxycarbamide
Hydroxycarbamide 
Taking hydroxycarbamide
