I am 13 and I have had a pituraty tumour and have been on steroids for about 2.5 years at first I was ok then I started to get a bit bloated the hospital said it was trapped air. The tumour makes me eat ( side affects) and this made turning the air into fat I can't do sport like I used to and I have probably put on 10 st but can't do anything. PLEASE HELP!!!(

I agree. Eating healthy such as veggies will answer your hunger without adding extra pounds to your weight. Choose the food you'll eat. This will surely help

Hi everyone!

I am new here and I just happened to stumble upon this posting. I am having the same problem you guys are with the steroids. I am 32 years old, 5'6 and I have weight 130 lbs for the past ten plus years. Back in December of 2009 my doctor tells me that I have Hashimoto's disease, adrenal insuff, and a 2cm pit tumor. Oh joy!!! I started taking levothyroxine and hydrocortisone. At first I didn't notice anything, but now I do and I HATE it. On March 31, 2010 I had the surgery to remove as much of the tumor as possible...then I started radiation. I have been out of work since January of this year and pretty much just sitting around the house. Now, I am putting on weight and very rapid. I have gained 25 lbs and I am so depressed. I have exercised daily for the past three weeks (stair stepper and ab lounger), no results...just steady weight gain. I have stopped taking the cortisol (without talking to my doc..I see him on the 6th of July). I have since read that steroids re-distribute the fat in your arms, legs, stomach and face. This is so true in my case. I now have cellulite pretty much everywhere and I'm miserable. I am happy to know that I'm not the only one this is happening to, but sad to see that there are so many of us going through this. Now, I just want to know how long it will take for me to lose the weight and what I can do to speed it up. I eat healthy, I don't starve myself by any means. I just want to get back down to 130. That's where I'm happy. I hate the way I look right now, and I'm very depressed. Does anyone know how long it will take to lose the weight and what I can do to push it along. Any advice would be greatly appreciated.

Hi all,

I have just read through these posts and it is, of course, like hearing my own life story. I was diagnosed with a pituitary tumour in 2004 and had two bouts of surgery in February and July of that year. I followed on with radiotherapy and was put on hydrocortisone, levothyroxine, desmopressin and adult growth hormone. All these drugs work well and as long as I take them I feel more or less normal.
The problem is - you guessed it - I have gained so much weight in the past 5 years it is unbelievable. I have always been heavier than I should be - but I am now 230 pounds and a UK size 18. I feel fat and ugly. I have always been told I am pretty and some parts of my body still look normal, but my God - I have gained weight round my tummy, my bum and my face. I know I don't look the same anymore. And I have tried EVERYTHING - healthy food, exercise, diets, but nothing works for me. I am managing to stay stabile, but I don't want to be stable, I want to lose the weight. I hate hydrocortisone and everything it has done to me and no one understands this. I go swimming and I gain 5 pounds. I spend a week eating fruits and salads and I gain 3 pounds. I make sure I have no more than 1500 calories a day and I STILL gain weight.
I'm not stupid and I understand that I am on medication to replace what my body doesn't naturally make anymore. But I cannot simply decide to make the best of it and accept that I will be fat forever. I want to go back to how I was when I ate more than I do now, sat around on the sofa but still weighed 50 pounds less than I do now. I want to come off the steroids.

Hi guys.

Tomorrow is the one year anniversary of my surgery. Not celebrating or anything just thought I would let you know what's up with me. I still have to take Hydrocortisone everyday but they lowered my dose to twice a day. I am used to taking the pills but I'm not ok with it. I wish I could live without them but after testing my doctors ensured me I'll have to take them until the day I die. Great..
Anywaaaay for the last YEAR I was on my super healthy vegan diet with moderate exercise and managed to lose 20 pounds. I guess if I was a ''normal person'' I would be like a supermodel by now It is possible to lose weight but it takes really really really a lot of commitment, self-control, sacrifice etc. Vegetables have to be your best friend and fruit your new comfort food. I did fall of the wagon a few times but didn't gain anything back. I would really like to lose 10 more pounds but above all I would like to tone my legs (they are just weirdly shaped)

I thought losing the weight would make everything so much better but in the end it didn't. I am still afraid my tumor would grow back, I'll need more surgery and get even more pills...

How are the rest of you doing?

Hello, everyone,

I had a transphenoidal procedure to remove a benign tumor on my Pit. gland in September 1994. However, after the surgery, the Stalk between the pit. gland and the hypothalmus never reconnected, so I was left with a completely dead Endocrine system. I, too, must take hydrocortisone (10.5mg at morning, .5 at night), levothyroxine, female hormone replacement, DDAVP (for Diabetes Insipidus), and Adult Growth Hormone. After my surgery, I ended up doubling my wieght from 120pds. to 230pds. I have lost about 30pds, but no more. The only diet I found that got me down to 175pds, consisted of a trail mix of almonds, banana chips, raisins, yogurt chips, and one or two other items. I mix them together in a Gallon-size ziploc bag, and let the contents "ferment." They are full of protein and other good enzymes. I am not a vegetarian, and I eat these all day and I never go hungry. I recommend this supplement to help you eat right, and still lose weight! Good luck to all!

Morph, the condition you and I seem to share is called panhypopituitarism. It includes the state of peri-menopause, when the period of women's monthly courses start to ease off and finally end. It also induces Diabetes Insipidus (the DDAVP we take). I take exactly the same meds are you! The day of my surgery, 1994, I weighed 120 lbs, but over 10 years, I doubled to 230 lbs. I found that a diet of a trail mix of raisins, almonds, banana chips, yogurt chips and maybe sunflower seeds mixed together in a gallon-size ziploc bag, left overnight to "ferment," provides all dietary requirements, and lets you lose weight while never being hungry! I got down to 175lbs! Good luck!

Hiya,
I dont want to give you negative thoughts but wanted to share my experience.
I was on corticosteroids for over a year. I had to cut carbs and exercise 1-2hour 5 days a week to maintain my weight and not put on.
I'm not sure if the meds are the same but I was on prednisolone. I did get major hunger sometimes but i used to use that as my motivation to go for a swim etc in the evenings.
I did read a really useful book called coping with prednislone and other corticosteroids. You will get it on amazon.
Let me know if you think i can offer any advise or support, I know i was desperate for help and support at the time.
J

Khat,

I had a pituitary tumor when I was nine and had it removed by slicing me from one ear to the next, removing half of my bone in my forehead to remove it. I am now 31 and a few years ago found out I have another pituitary tumor (I believe they say you have an 8% chance of getting another one). I have been taking hydrocortisone or cortef for YEARS(including growth hormone shots twice a day for 6 years)! Between the age of 9 and 20 I took it and then decided to slowly wean myself off of it (I moved away to go to college and was unable to find a doctor and had no insurance and could not afford). First attempt I became very sick, the second attempt I felt fine and lived without it for almost 8 years after being told I would NEVER be able to stop taking it. I have since been put back on it for 5 years now as my pituitary does not function at all as well as my thyroid gland (I have hypopituitarism and hypothyroidism). All this I have been told by Endo doctors and they say the reason I lived the 8 years without the hydrocortisone was because I was lucky. I don't believe in luck.
When I slowly weaned myself off of it I began to loose a lot of weight. In fact I got down to the smallest I have ever been my whole life (I have always been a 12/14 size since I can remember but got down to a size 6). I ended up going back to the Endo 5 years ago as I started feeling poorly and thought i would just get everything checked out since it had been years and this was my first time to have insurance and the funds to go see one. They have since put me back on hydrocortisone and I have, over the course of the 5 years) gained all the weight back and am back to my heaviest. I have tried every diet imaginable and nothing has stopped the weight gain. I find the best time to take the hydrocortisone is at night before bed. Doc thinks the best is in the morning but I feel no different and why have cravings during my waking hours, I'd rather have it at night while I'm asleep and won't know any different.
I only eat twice a day, once in late morning and once in the evening. I eat all organic and am on a gluten-free diet as my stomach can not handle the gluten (not sure if this is because of the meds). With the gluten-free, non-GMO, organic diet I have managed to loose about 8 pounds since the last time I checked on 11/4/12(I only allow myself to check, at the most, once a week). I take DHA/EPA Now product fish oil, as because of the hydrocortisone my triglycerides were through the roof (they are now normal). Also D3 vitamin as I am also deficient in it and need all I can get.
Believe me I have tried everything. I think the diet they suggest is extreme but than I'm no doctor. To me they don't know anything either. My suggestion is to listen to your body. Only you know how you feel and what will work for you. They can run tests all day and say you are not in normal range but last time I looked we are all completely different. I also see a Health Kinesiologist(I stress the HEALTH part as some who practice do things that I don't agree with) who has been able to help me in feeling better. I'm a firm believer in using good Essential Oils (I purchase Young Living) to help mood, diet and even hormone functions (this I use to aide in helping my body function better). I hope all this has been useful and maybe a little encouraging. Time and unforeseen occurrences befall us all (Ecc. 9:11) and is not a result of anything you did. Surround yourself with supportive people who don't care what weight you are. As I see it, as long as you are healthy and do your best than that is all that matters. I do get down on my weight on occasion but I have good friends who remind me that "Hey! Your on Steroids! Your just fine!".
So just focus on healing first and worry about the weight gain later. No point in worrying about something we have no control over. One day none of us will have any sickness any more (Rev. 21:4) and reflecting on this gives great comfort. Hang in there!
Cathy

I have been on Hydrocortisone for 6 years. I was diagnosed with low thyroid and then adrenal insuffiency. The thyroid tablets did not stop the weight gain at all. I was on Armour but now take T4 and T3. I started to lose the weight this year on a low carb, low sugar, grain free diet and touch wood it seems to be working. 15KG down so far with no exercise as I have a damaged knee. So try not to be discouraged folks. You just have to find the diet that suits you. Hang in there!

It's a few years since I was on here last but I have just read my post (wow, I was in a bad place!). I am going to follow Cleopatras advice with the bag of food. Does anyone know what yoghurt chips are, please?

Hi everyone, I know your post was a long time ago but just researchimg and came across it now. I also had a pituitary tumour removed around 5 months ago. I was taking Hydrocortisol as well as Desmopressin which the doctors said would be long term. But I refused to believe that! I started incorporating maca powder into smoothies as it’s a superfood for the hormonal system as well as eating super clean and incorporating daily exercise, lots of vitamins and supplements and just eating whole foods, staying away from sugar and all the rubbish packet foods and just eating a really healthy yummy diet! I had my check up last week and all is working well and I’m off the cortisol medication now! Food is nature’s medicine, please please do your research as it has the power to heal you xxx