MPN Voice
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Cutting out added sugar and processed foods

Hello everyone. I've been reading posts about putting on weight and fatigues with hydroxycarbemide and I just wanted to tell you what's happening to me since going on to the drug. Once I'd got my head round it, which took a week, I decided to see what research there was about diet for this condition... And there's nothing! The only advice is to eat healthily and be active. So having researched what that could mean, I decided to cut out sugar - in particular fructose - as it turns to fat and sticks around internal organs and blood more easily.

It takes a bit of working out what's OK to eat with natural sugars containing lots of fructose so I've cut out honey, table sugar, fruit juices, maple syrups and the like. I use lots of coconut oil, malt rice syrup and courgette, carrots and sweet potato in baking instead of sugar. And I only eat 2 pieces of fruit a day, which is the hardest thing!

I also have cut out processed food - not that I really ate that much but I was surprised how much sugar is in all sorts of things! Cereals, honey, dark chocolate, fruit juices, sometimes when i add it up now i was probably eating about 30 teaspoons of sugar In things i thought were good for me! And I don't buy ANYTHING that says low fat on it unless it's naturally low fat :-)

The upshot is I feel more energetic than I have for years, which given ET and hydroxy is pretty good! I've lost a stone in 8 weeks without even trying and my skin, hair and eyes are brighter than ever! It hasn't had any impact on platelet levels, but thats not surprising necessarily, I'm doing it more for better general health than to expect it to 'cure' this condition.

Sarah Wilson writes a lot about the impact of sugar - there's nothing specifically about our conditions of course, but lots on the impact in general health and she has some good cookbooks out there too. but anything that builds my energy levels is good!

I don't want to sound like some evangelist but I can't tell you how much better I feel! happy to chat to anyone who wants to know more.

Enjoy the rest of the weekend - it's lovely and sunny in the Midlands today!


4 Replies

Hi LizzieET

I'm new to the forum and also have ET diagnosed in May . Im certainly interested in the impact of diet and lifestyle on chronic illness and agree with you about processed food and low fat foods which usually have a chemical formula on the side just to make them taste better ! I've put on weight but I know I'm kidding myself about the hydroxy as I gave up smoking last year and love chocolate ! So I am trying to be good now. I'm reading a book at the moment called Healthy at 100 and it is about why some other cultures live to a great age without getting sick and certainly diet and lifestyle and nurturing good relationships come into it . I do realise that illness is not caused by any of this as my son was born with heart disease but every little helps .


Lizzie, I agree.. Eating well (& gentle exercise) certainly helps.. I lost 3 stone with the help of a slimming group, & cleaned up my diet and felt so much better for it.. However the last month or so I've not been eating right & am starting to feel sluggish & drained.. Definitely need to get back on track...!! I'd love to see some research done relating to our condition & diet!

Lesley (from cloudy yorkshire!)


Hi, I was struggling with weight gain before the hydroxy, which seems to have made it worse. However, on advice from a dietitian I have cut the carbs, which has resulted in a (slow) weight loss so far of 9 lbs. I had a blip and put some back on while on holiday, but have lost it again now. I do find it helps to write down everything I eat so that I can see if I have been doing things right or wrong. It's surprising when you write it down exactly what sort of food you do eat in a day. I am following, more or less, what used to be Red Days on Slimming World, more protein, lots if veg and very few carbs. I swim 4 times a week, but that is mainly for help with my arthritic joints.


Hi Liz,

I too have cut down sugar considerably. I feel well and energetic. I'm certain that because of my diet and lifestyle changes I am keeping my PV at bay. No one can prove this as there is not a clone of me to be the control part of the experiment which is precisely the problem with "research" which is always drug based because the drug companies are the ones with the money. Hemotologists are well aware that hydration and cutting out red meat has an effect. I have no idea why the conventional medical profession do not take this further.

There is plenty of documentary evidence out there about diet and lifestyle having a really dramatic effect on cancers of all types. I've been following the advice of a medical herbalist who is big on diet for all conditions.

I have just read an amazing book by a doctor who discovered he had a brain tumour and along side conventional treatment looked into the diet and so called "alternatives". He is particularly careful about not giving people false hope but it is really the first book I've found which takes the notion that we can really boost our body's natural capacity for protection and healing even with cancer. I have already been doing what he suggests in the book for a year because my herbalist knew this stuff already! The book is : "Anti Cancer-a new way of life". Dr David Servan-Schreiber.


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