Hello again all you lovely MPDers out there...just a quick enquiry for all those on 1000 mg dose of Hydroxy daily. Do you split it into morning & evening tablets as I'm wondering if the tiredness crash at dinner/early evening could be avoided if I were to spread the dosage out. Fed up of falling asleep on sofa about 7 for couple of hours then not being able to sleep when I go to bed. Whooah....and the night sweats in this current lovely hot weather are doing me in!!!! Anyone any handy hints.....apart from kipping in the fridge that is! Stay well all. Mandy
1000mg Hydroxy in one dose or 500 a.m. & p.m? - MPN Voice
1000mg Hydroxy in one dose or 500 a.m. & p.m?
Not so sure, tiredness is just part and parcel...my hubby does 500mg once a day, tired by 6-7pm regardless... Sorry but just being a newbie to it all, still learning too....
My haem advised me to take my 1000mg at night and the aspirin (also prescribed) in the morning. I too often fall asleep in the evening, (could be the boring tv!) and also suffer from night sweats. In fact often, if I sit down in the afternoon, I fall asleep for a short time (embarrassing or what?!) I have also put weight on since being on Hydroxy, and I am really struggling to lose it!
Probably best to ask your consultant/clinic nurse or a pharmacist but on 1500 and above I was advised to split the dose. No hints on the sweats I'm afraid. I seem to spend as much time on top of the bedding as under it!
Hi everyone.
I take the following religiously in this order.
75 mg levothyroxine on waking - about 9am. I have an under active thyroid.
1000mg hydroxicarbamide at 11am with 750 ml water
75 mg aspirin at bedtime ( GP told me this is the best time to take it as most strokes occur at night or early morning)
I follow a strictly organic diet ( very little meat, lots of fish - organic /wild salmon and white fish, and am extremely careful where I source my chicken) , do not drink alcohol, do not consume any caffeine whatsoever inc tea decaff coffee and chocolate, eat only organic sugar and sea salt.
I drink 3 litres of water every 24 hours, go to bed at 11 and stay in a horizontal position for the next 10 hours ( don't sleep all that time but my body's resting) take an hour and a half's exercise - usually brisk walking - every day, and do not have any stress in my life.
I know I'm lucky I'm 60 and retired.
I have no fatigue, no sweats and feel great.
This " regime" if you like isn't easy to stick to but the alternative is far worse.
I'm due to speak about changes to lifestyle at the MPN forum at Christie's in Manchester on 28th June.
Hope to see you there! And hope perhaps this rant helps......best wishes, Louise x
Louise, just read your response to the question posed by PollyPV and the thing that concerned me was, 'This " regime" if you like isn't easy to stick to but the alternative is far worse" far worse being what exactly? I ask this because I'm 60, have ET, take 1000mg Hydroxy daily, times vary whenever I remember, I drink tea in copious amounts, drink lots of beer and wine, eat chocolate, have no fatigue or night sweats and feel great.
I take both with my hu pills with my evening meal then the crash hits me at bedtime....2 birds/1 stone!!
Hi - well just to be different. Have been on HU for 10 years (ET for 18+ yrs). I take 500mg week days and 1000mg at weekends. I have always taken it in the morning after breakfast with my aspirin. I do sometimes hit walls of fatigue, that materialise out of nowhere, normally early evening. Mornings are pretty good. I rise each day at 6.00. Work in the behavioural department of a school, so definitely not a stress-less job, although am able to be home by 4.15. I take the evenings as gently as possible and am in bed by 10.30 and asleep by 11.00. Works for me x
Hi,
I can relate to the night sweats! I get them during the day as well, I'm on 1500mg HU daily and take it all at breakfast. I haven't noticed any problem with excessive tiredness.
I was on that same dose ,I used to take one capsule in the morning one at bedtime ,to spread the load, but the night flushes were always an issue for me, for 18 months , despite venesection every 4 weeks ,my blood results were still unstable ,,I was feeling very ill. My world just stopped .but as I have written before I'm much better now ,, good luck ..try reading the book I recommend it's an eye opener,,The China Study, by T. Colin .Campbell.Phd .. Violet x
Thanks all. Lots to reflect on there. Especially diet Louise, thank you. Am radically changing mine - as a nutritionist on Radio 2 recently recommended, I'm attempting not to eat anything which contains ingredients I can't pronounce! I.e. processed stuff. I'm not far behind you Louise, age wise, but sense my life style contributes to the fatigue as working 2 jobs, 2 teens still at home,studying etc etc! The 3 litres of water is a must for me (although my bladder rebels at the constant onslaught! ) & as I think I've already mentioned, having a dog was the best move I've made as I HAVE to walk daily-anything from half hour to 2 hours a day. Am going to check with my haem before I stagger the dose but I just sense it may help from the replies that have come in. Thanks again. This is a corner of my world that is so reassuring to know is always there. Because others can't see what we're carrying around its good to feel carried & supported by MPDers on here who understand. Priceless people!
Hi Polly, I too take 1000, Hu daily, have tried splitting it serveral ways, but what works for me, is taking first dose at teatime 6ish, and next dose bedtime, this way I have found the fatigue is then mainly late evening, but I would try all combinations you will find one way to suit, best of luck.
Hi Louise Look forward to hearing you speak on Saturday, best wishes