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ET, fatigue and vegetarian diet

Hi all!

I was diagnosed with ET JAK2 + about 6yrs ago after having the classic symptoms of fatigue, itching, pins and needles, migraines etc. I'd been having odd symptoms for years before, including spontaneous bruising and a miscarriage 19yrs ago caused by a haematoma forming in my womb. All tests back then were negative, but it does make me wonder why my body was having these symptoms for so long.

Anyway, after my initial diagnosis, I was put on daily aspirin which stopped all the symptoms I'd been getting, including, thankfully the debilitating migraines. At the beginning of this year though, I started getting stomach problems with the aspirin, so my haem prescribed clopidogrel which I'm tolerating well. My platelets had been stable in the high 400s, but at my last appointment had gone up to the high 600s. I know this isn't considered very high in the grand scheme of things, but I seem to react very sensitively to any changes in my body. I've been extremely fatigued at times lately. I've been a vegetarian for many years but am considering introducing some meat back into my diet as I feel rather depleted at the moment and my diet just isn't cutting it. I'm craving sweet things a lot which I know won't help in the long run, so try to avoid and I do eat a very healthy diet. I'm just wondering if there are other vegetarians out there with any dietary tips (I'd prefer to stay veggie or at the most eat fish) to keep me on tip top form. I'm 41, work full time as a nurse, walk my dog twice a day and consider myself fairly fit. I've read other posts that talk about not pushing through the fatigue but letting yourself rest; if I did this I wouldn't get anything done or have a life!

Many thanks

Lucy

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Quality of life and exercise are so important. Exercise is something I force myself to do. However too much and I sink into fatigue mode. Followed by self pity and low mood for a few days. Your haemo could check your iron and b levels.

I take chai seeds on my cereal and b12 tablets. Don’t take supplements without discussing with your haemo though.

Oh how I wish a mathematician could come up with a formula for each of us.

God luck

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B12 & Chia are two things I take also. Add to that Maca powder, Moringa Powder, Vitamin D and lots of minerals, along with always having been an athlete helps me feel great.

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I’ve stopped taking the chia seeds as I have maximum ferritin levels. I must admit I’ve been lazy with the b12 and vitD must restart.

Thank you for the prompt

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Have you had a B12 vit test?

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I was about to suggest the same, it may be worth getting your vitamin D and B12 checked, I’m just a few years younger than you with similar levels, I was diagnosed with pernicious anemia, having the b12 injections makes a huge difference to my fatigue levels, I was also hugely deficient in vit d, having them both has made a big difference to day to day functioning and working! I hope your feeling more energised soon xxx

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Hi I have been a veggie and vegan for a bit for years and recently had my vit d, b vits and iron all tested and my levels were great were the haematologists words, tiredness could be there regardless of diet because of your condition I still get very tired alot. Maybe introduce fish back into your diet but unless your deficient then there is no need to change back to meat, if you think you might be lacking in protein then eat a few portions of lentils or legumes. I cook alot of curry most days so dhal is pretty common in my house.

Take it easy, keep eating clean....

Nick

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Hi Lucy. I also walk my dog twice a day. It's the first thing I do after my morning coffee because if I didn't I would have allowed the fatigue to set in for the day and it would get worse rather than better.

I find that this disease is only 'managed' (never beaten) by working to overcome the fatigue and never giving in to it. Unless of course you know you have overdone things. there will be times when rest is necessary, perhaps even for a day but I'm with you. Mind over matter always works best for me. I also just discovered sublingual B complex, which helps me a lot to work against my fatigue. All the best. Penelope

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Thank you all for your replies, I'm going to ask my GP to check my B12 etc as suggested. It's horrible when I'm in such a brain fog I cannot think clearly, even being in the profession I am, I still find it difficult to look at myself with my 'professional' eyes.

Yes, will try cooking with more pulses and legumes Nick, dahl is a particular favourite that I haven't cooked in ages... I think I know what I'm having for dinner tonight...!

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Will you actually get that B12 check from your GP? That's going on the list for my next visit on Tuesday next!

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Absolutely - my GP is pretty good at doing what I ask him, perhaps due to me being 'in the profession'! Good luck with yours :)

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Oh my word. Dahl. When did I forget....? Even when I made soup I always added lentils but my brain fog has emptied it of most of these types of delights.

today (as promised to myself Monday last week) I have got to complete my preparation for induction week on the 17th. That's what my brain does. Completely removes all my intentions for the day. I think we must use up all our brain cells overcoming the fatigue.

So, beside my work preparation, today I must make soup and remember the lentils. All the best.

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I've been eating lots of hummus and made a veggie curry with oodles of lentils in and half a squash I'd grown on my allotment - delicious! Like you say, when the brain fog comes, it seems to empty the mind of all helpful stuff. Hope your soup was good!

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Nice, these are my types of food. Though I say it myself, my soup is good. I just need to get myself into the habit again. ATB.

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You may want to consider eating foods with b12 or taking supplements. Just saying :)

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Hi Lucy

I have found using

B-12 Extreme™

Sublingual Vitamins and iron tablets works well for fatigue. The B12 Extreme is taken under the tongue and is the strongest form available world wide. It is not cheap about $42 but it is amazing. I have been buying it online from ProHealth. I think you will be surprised how well this work. I can not praise it enough. Good Luck and God Bless

Anna

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Thank you Anna, I'll look into this and see if I can get it in the UK. If not my American husband may be able to get hold of it! I've been feeling a bit better of late after ensuring I get the proper veggie proteins I need, think I was going a bit light on them.

Best wishes

Lucy

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Hi Anna I'm thinking of taking COQ10 to help with my fatigue I read a post on here saying it's help them with fatigue. I've also been told to try B12 just wondering what your thoughts are B12 Vs COQ10 ? I really need to try something I'm so tired all the time.

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