I am 61 and have ET. I was on 2x500mg Hydroxy plus 75mg Aspirin. I stopped taking it in September. In December I went to see a private doctor in Harley Street, not a haematologist. She did some blood tests, the results of which may be of interest to others, although they relate to me. It may save others having to spend a lot of money on private consultations. First of all my platelets had shot up to 1300 from around 460 and I have started to take the Hydroxy again because of fear of the unknown. The doctor recommended that I take the following supplements: Eskimo Brainsharp Fish Oil, Vitamins D & K2 by Dr Mercola , Methyl B Complex by Biocare for raised Homocysteine, Vitamin E Mixed Tocopherols by Nutri Advanced to thin the blood and Wise Owl Probiotic E505. The Vitamin E surprised me a bit because I was told by someone else that I should not take Vitamin E with my condition. This needs checking further. Also the thyroid peroxidase antibodies were raised so the Doctor told me I have to go on a gluten free diet. It is some sort of an autoimmune thing. Also I must not eat sugar because sugar feeds cancer and no dairy. So I am on gluten, sugar and dairy free diet from now on. I did go on this particular diet last year but slackened off because I did not understand the reasoning for it. All these supplements can be purchased from "Natural Dispensary" on the Internet.
Everybody should attend to their health and diet, but people tend to wait till they become ill before making the changes. With an MPN and especially with the severe symptoms some get with it, it is important to really look into this diet thing in depth, even if just to get some relief from the symptoms.
Searcher 56
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Are you on aspirin as well. Just wondering about excessive blood thinning. Last year I combined fish oil, turmeric and garlic capsules with aspirin and ended up in A&E with a nose bleed that won’t stop. When I informed Guys they politely told me I was an idiot!
Yes I have to check this. Fortunately I can ask Professor Harrison herself through the MPN Voice website. Maz will ask her. I have already sent a couple of questions like that. One was about vitamin K2 and the other was about Gingko Bilopa. My own haematology department seems far too busy and difficult to get hold of to answer questions like that.
Did the A&E really use the word idiot! Not very politically correct. How could you have known. There is not much information about vitamins and supplements together with MPN. They say you should let your doctor know everything you take but my experience is that they are not that interested. It must be very mentally exhausting to see a stream of patients all day 10 minutes after 10 minutes. When somebody starts asking about supplements, can the brain cope?
My experience at Guy’s is that they actively ask whether you take any supplements. They are very interested - precisely because some supplements can have unwanted outcomes if you have an MPN.
Hi, completely agree with you. They do want to know and they do listen when you talk to them and they don't spend only ten minutes with patient but whatever time they need to spend with each patient.
Of course at Guy's they would be interested in supplements, after all they are the flagship hospital and specialising in MPN's. It could be different with underfunded regional hospitals.
Of course you are right - the many posts on this Forum testify to the fact that the management of MPNs, the advice given and the support received is often patchy and falls short of best practice. Hopefully through this Forum we can become better informed patients and in this way create better practices and responses among practitioners. Enjoy the festive season.
Re ‘idiot’, I was using a degree of poetic licence, let’s just say that I got the impression my hemo team at Guys didn’t think they were dealing with Einstein.
😂 I can just imagine the scene! Prof Harrison is not a fan of supplements. I think the Guy’s view is in line with many others. If you eat a balanced diet there really is no need for supplements - they tend to go in one end and come out the other. And cost quite a lot for the priviledge. And many can do harm not good in the process. Having said that I take B2 for migraines as prescribed by my neurologist and they don’t have an issue with that. However that’s not to say that no one is interested in the effects of diet on MPNs, quite the reverse. There is a lot of research going on at the moment and I think everyone is keenly awaiting the outcome / advice.
I have seen so far 3 different health care advisors and one doctor and they all give differing, not necessarily contradictory, advice. I had a blood test done by the Morley Robbins Group plus a hair analysis. Somebody spent 1 1/2 hours with me on the phone explaining the test results because they are very complicated. This particular advisor advocates getting vitamins from food. She recommended that I take the following supplements, which I am taking on top of the vitamins: Bee Pollen for vitamin B group, Stabilised Rice Bran also for vitamin B, CamuCamu powder for vitamin C (also Innate Response C was recommended), Cod Liver Oil and also this interesting stuff called Diatomaceous Earth, to clean the gut. It is sold in powder form, mixed with water it has not an unpleasant, chalky taste and it absorbs toxins but it also absorbs nutrients so should be taken between meals. Also having a bath with bicarbonate of soda and borax (20mule Team) again has been an interesting experience because the hard skin on my feet started to peel off after this kind of a bath. Or even a foot bath would do the trick. All this was recommended to me specifically after a blood test so these things may not suit everyone. They can be purchased on Amazon or Ebay economically which made me have faith in Morley Robbins. Often these alternative health groups soon start to flog their own products at an extortionate price but not so far this one.
As far as vitamins go, I have tried all sorts but I think it is the Vitamin D plus K2 that has made me feel well and also Vit B complex. Many years ago I kept getting adult spots on my face. At the time I was taking multivitamins from the supermarket and then I stopped. Lo and behold, the spots disappeared! Also I suffered from intimate itching and finally I traced it to a particular good quality vitamin brand. So caution is needed with all medications and supplements. Many symptoms could be traced to them.
Supplements and PV or ET are unexplored territory. So it is good to see what the Harley St specialist recommended, presuming he or she knew about the complications of bone marrow overproduction. I find there are 2 parallel lines of thought on supplement and the two don't interact yet.
I am 69 and have had PV for 12 years. On Interferon . Aspirin stopped 3 weeks ago due to taking Ibuprofen for hip/back osteoporous arthritic pain. A blood test reveal ed inflamation level of 55 when top is 12. I emailed haematology nurse re any connection with PV and inflamation. Answer no. But my research shows there is and it is becoming a serious line of inquiry. But for now an anti Inflamatory diet is suggested and Searcher this is your no gluten, dairy or sugar recommendation. I know this but just can't do it yet. Too dependant on toast, yugort and dark chocolate.
Thank you for your list of supplements and where to buy them. I plan to look into them.
There are many viewpoints on dairy. I stopped having dairy, sugar, gluten, tea and coffee last year in November although I have slackened off somewhat. Also I started exercising, long walks and a bit of yoga. Since then I have lost 3 st in weight and all my friends and family tell me how well I look. My mum lived to be 90 and she ate coffee, sugar, dairy and bread. So I think of it as a trade-off. If you were a super model or a film star, you would definitely be on a very specific diet. Or a top-level athlete, what do they eat? Certainly not what takes their fancy. Eating dairy probably won't do you much harm but you may have a somewhat healthier life if you did not and got your calcium from somewhere else but dairy and sugar and wheat are enjoyable. So the choice is yours. Internet is full of viewpoints.
Thank you for replying. It’s all about about choice isn’t it? And how much we are willing and able to give up. Since I’m already dealing with allergies( peanuts, shellfish, flaxseed, etc.) and lactose and food intolerances ( too many and too boring to mention) I’m already on a somewhat restricted diet and I’d like to hold on the the dairy that I can have but no doubt it would be best to forego them entirely. But I’m not sensitive to celiac ! Yippee!
Like you, I also practice Yoga and try to walk a few miles a day- I’m no athlete but I know it makes a difference and I love it. I’m missing Yoga for a few weeks following hand surgery for trigger fingers - just an inconvenience-no biggie.
It’s wonderful to be able to participate in this forum- I find it quite a comfort to chat with other folks dealing with MPNs. It’s also so very informative - thank you Searcher and thank you all.
Be well !
Happy Holidays and a very Healthy New Year.🎉🍾🕺💃Lourdes
BTW, I m not sure how to find people - or specific replies ( including my own! ) . It’s a hit or miss experience.
My test results come under, not thyroid, but "Immunology". My "Thyroglobulin Antibody" was normal but "Thyroid Peroxidase Antibodies" was high at 50.9, normal range 0-34. Doctor thinks gluten free diet would lower it. I said to her that I do not get any tummy upsets from eating gluten but it is nothing to do with that, it is some sort of an autoimmune thing. May Internet would have answers and your own doctor. It does not hurt to go gluten free for a while, there is no harm in it, just to find out. I was on a gluten free diet last year in November on a Herbalist's advice but did not stick to it long term because I did not get any pains and could not see any reason why I should continue but now I have an explanation so I will give gluten free another go.
Becareful with all those vitamins etc. My consultant told me to stay away from supplements. Eat cheese, it slows down the iron. And a glass of milk a day for your bones, eat orange and green vegetables, and don't take vitamin C veg fruit or drink if eating meat it speeds up the iron. Take care,
This is the first time I have heard iron mentioned. Do you have too many blood cells in the body? I have ET and I have always been prone to low iron levels. Your consultant's advice maybe specifically tailored to your needs. I have never had any dietary advice from my haematology team.
Yes I have ET and PV, for our best health we need to watch our iron intake,My consultant and his team were very diet conscious. Ask to see an oncology dietician/ nutritionist.
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