I have ET and after researching the effects of hydroxycarbamide on weight gain, I learned that the average gain at 18 mths was 3.16 kg. Of course not everyone experiences this weight gain, but I was hoping some of the concerned 'weight watchers' here have had some success in this battle. Did this involve a change in medication or strict dieting?
I don't want to give up just yet , but it's almost an uphill struggle. I've gained about 2 kg in 12 mths, despite calorie reduction. Any tips would be appreciated. Incidentally, my platelets are in a happy place now and I'm on 500mg daily. I think I'll be on these meds for life, so happily no other hiccups with the hydroxy ...beside the 'weighty' issue.
Yes ,me ,freaks me that I cannot fasten jeans !!!! I am normally very slim & active ,never eaten fattening food,same weight thru my adult life.I really don't think there is an answer.I am PV taking Jakavi that's when I lost my waistline👹 Best to you.By the way my consultant just laughs when I grumble about losing my 'shape'!!!!
Hi 222bobbyI have the opposite problem I have et jak2+also over active thyroid problem I am on one 500g Hu to my surprise I have over the two years my weight has plummeted from 11stone to 7stone five so I have had to go out and buy smaller size clothing I have had so many tests done and got now two big bags of protein drinks to take I eat normal diet have had three infarctions to liver and also had my three COVID jags and booster which I am worried about as it was a make that it was never been advertised or seen on TV
It is a good day to post this Bobby. The Christmas season ended yesterday, Today is Candlemas, and we have got through a British December and January in semi-hibernation, and Covid isolation, wrapped in Winter woollies and cosy rugs, enjoying comforting fruit cakes, chocolate, and warming casseroles.
I have followed Sir Tim Spectre’s reliable talks on the progress of Covid from the Symptom Tracker information. The Zoe study was about food and the system was adapted to get thousands of volunteers to record their health daily.
I am interested in the Zoe food study because so much information about a healthy diet just seems to make us all gain weight. The latest “healthy” NHS diet is a 900 calories soup and shake of chemical junk, which is completely unsustainable. Very few people were fat when we had stodgy school dinners and our daily third of a pint of full fat milk.
I lost weight with High Fat Low Carbohydrate eating and have increased the variety of fruit, vegetables, grains, pulses, seeds and nuts as recommended, and make my daily glass of kefir for the gut biome, following the advice of Dr Michael Moseley and Michael Pollan. I have sworn off ultra processed factory rubbish and cook proper meals and make stock and waste almost nothing.
I had a milestone birthday yesterday and bought myself a copy of Dr Spectre’s book “Spoon Fed, Why almost everything we’ve been told about food is wrong,” to have a fresh look at food.
February is a good time to seek inspiration and to get over the Winter excess padding, and think about getting some fresh air and exercise. It might be a good time to think about growing some fruit and vegetables too, in these worrying times. My husband bought me a blackcurrant bush for my birthday.
Perhaps we should have installed a hamster wheel at the start of Covid because we stopped going to the school sports centre to use the gym, go to Pilates, Yoga, and swimming, and got utterly bored with the walk round the park. It might feel safer soon when everyone has had Omicron.
When I was first diagnosed with ET this summer I decided to loose the extra bit of weight I carried. I started before I went on Hydroxyurea and continued on after. I am loosing at a turtle pace but I have lost 25 lbs and now weigh what I did on my wedding day. At 65 it isn’t easy but doable and I was not going to let my meds control me. To be honest some days I know I eat less than 1000 calories. Lots of vegetables, fruit and fish.
One side effect that is bothersome is my blood pressure. At the start of my new life style and before meds it was normal and now it is low, 94/64, some days even a bit lower. Not sure why this is happening.
Well done. That's a great loss. That's so encouraging. I'm not giving up either and have chosen to revert to a plan that worked for me before 18 months ago. ..LCHF I 'm pretty sure carbs are my enemy. All the best with your quest.
I am on hydroxycarbamide and gained a lot of weight and bloated stomach all the time I joined slimming world 3weeks ago ,gone the bloated stomach, and have lost 3lbs weigh day today here s hoping slow but is coming off
Yes I have gained weight too I was thinking of doing sit ups each morning as all the weight has gone onto my torso rather than anywhere else did you try this x
Before starting on HU nine months ago, my weight was just right. Now I am 3/4kg over that and growing a tummy. I eat well (as in healthily) and have been doing so for a number of years and also keep fit with regular running and yoga/pilates. This extraordinary weight gain is very annoying. In the past, after the Xmas bonanza and usual winter padding, I would just turn up the volume of my training and control the carbs and I would be fine again, but this time it seems harder. However what lakeview65 and ChillyAsh34 write is very encouraging. Just need to be in the right mind-set to cut down the intake.
My situation is a mirror of yours, Aldebaran. I'm also in the situation where I would feel uncomfortable discussing weight gain with my specialist. If we just knew whether it was an issue with slowing metabolism, water retention/belly bloat or some other mysterious issue.Thanks for your reply. Cheers!
I have found that doing a moderate fast two times a week keeps my weight to something I can live with. Not as low as it should be, but not as high as it was either.
No diet works equally for everyone I suspect. I found the fist month very hard, after that it was much easier. Both my husband and I found that if we schedule a lot of work on fast days it is much easier.
Fasting has really taught me how much of my "hunger" is as likely to be dehydration, habit and/or boredom as any real need of nutrition though.
222Bobby, hydroxycarbamide causes magnesium loss. Adequate magnesium is needed to activate thiamine and vitamin D. Research how these combine to help in weight loss
Good. Also check out two forms of thiamine TTFD and Benfotiamine. Be aware of anti thiamine factors. They decrease or destroy thiamine. Search on "stuttering anti thiamine factors" for a list. Finally search on "nothing boring about boron". Boron is the fifth element and offers many benefits for your health and your quest. Always consult your health care professional before using any supplement.
I’ve gained weight but I think it’s due to being less active because of fatigue. I did diet( rosemary connelly ) then put it all back on. Now I’m pre diabetic so HAVE to lose weight. I’m trying the cutting down on portions method.! No its not going well🥴😱!
Thanks for your reply. I'm hoping cutting calories will work, but I'm very tempted to seek out an alternative med. I'll discuss it with the specialist next visit and hope he doesn't dismiss this issue for me.
The Times had an interesting article by Dr Michael Mosley yesterday. This obesity epidemic started in the 1980’s when the food industry started mucking about with food to make it cheaper to produce with a longer shelf life, and we bought in to convenience.
Protein is expensive, so reducing that with fillers and flavourings saves them money. Dr Mosley suggests that we are craving the protein we need, so we eat more and more of the ultra processed junk because we are not satisfied.
Think of the rather stodgy school dinners we had with a pudding every day, and our third of a pint of full fat milk, yet none of us got fat. They had minimum standards for protein, fat, carbohydrate, minerals and vitamins, and were cooked from basic ingredients. Where it said meat on the list it was butcher’s meat, plain and simple, no burgers, no extruded mush formed into meat shapes. We had potatoes every day and seasonal fruit and vegetables, lots of cabbage and carrots, nothing imported.
The only dodgy ingredients of necessity in post war austerity were margarine and Spam.
There was no choice, the portions were sufficient and we were encouraged to eat it all up. We felt satisfied and didn’t need snacks. We had energy to run about, and we slept well.
The cure for obesity is to eat proper food again and nothing adulterated and ultra processed.
At breakfast, there is no bread that never goes stale, no commercial breakfast cereal, or cereal bars, no fruit-flavoured yoghourts or plastic pots of desert, no cartons of juice, instead we have proper whole milk, a small bowl of porridge or muesli, plain yoghourt or kefir with fruit, a slice of bread from the bread-maker (flour, yeast and salt,) butter, home made marmalade, (oranges, lemon juice, sugar) an egg, and half an orange each.
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