So, I have been diagnosed with a non-secreting pituitary tumor the size of a golf ball this summer. I am now recovering from transphenoidal surgery which happened last week. I am currently being held at the endocrinology department at the hospital for further testing regarding my hormones. I am writing all this from my cell phone, thank god for modern technology eh?
So it turns out my hormones are all confused now and I have to replace some of them. Thyroid and growth hormone seem to be ok. My LH and FSH are all messed up(but this might resolve and I hope thats true because I do want children in the future) and my cortisol is too low. So now I will have to take hydrocortisone 2 or 3 times per day. Maybe this will change but that will be clear 3 months from now when I come back for further testing.. I've read that this is a steroid with some very unpleasant side effect which I can't wait to experience..
As if I didn't have enough problems losing weight before now I hear that hydrocortisone makes you hungry and gain weight or at least makes losing weight impossible.. Does anyone have experience with this? Any tips or suggestions regarding diet or lifestyle (heavy exercise is not an option due to recovery from surgery but I plan on having long walks in this first few months)? I am 22 years old. I've always ate healthy and been active,but I was always heavier, I've tried losing weight with a low cal diet and rigorous exercise for like a year but had no success. If the tumor was to blame for my problems is unclear but I was pretty focused on losing but kept losing the same two pounds until I finally gave up and gained 15lbs in what seems like minutes:) I really don't want to become someone that blames her hormones for everything, I would just like to feel like my old self again..
Any help would be appreciated.
09-18-2009, 11:08 AM
I'm on steroids for asthma and COPD. I deal with the hunger byalways having veggies ready to eat and planning my meals and snacks in advance and sticking to the plan. What we are dealing with is head hunger, not true body hunger.
09-18-2009, 01:20 PM
Also, remember that you are replacing steroids you're deficient in, not adding steroids to treat an different condition.
09-21-2009, 09:15 AM
The problem is they are giving me more hydocortisone that I need because they can't say for certain if my pituitary-adrenal axis will improve or worsen.. My pituitary is still confused because of the surgery I guess and I might need hydrocortison for life or I might not.. I just don't want to gain more weight..Is that so much to ask for. I thought maybe this surgery will help me finally get some control over my weight but turns out it's not that simple. These hormones are just killing me (well..and the hospital food).. I'm depressed, gaining weight while barely eating anything, I'm tired all the time..I'm just not very optimistic at all.. I guess I'll see what these next few weeks will be like. I hope I will keep my apetite surpressed when I come home so I don't start overeating..
Thanks for your replies anyways.
09-21-2009, 12:54 PM
That does sound tough. Focus on your health for now! I know that's easy for me to say :). But your body is going through a very tough time right now. Feed it lots of really healthy veggies and stay active and sleep as well as possible, and give yourself some time to get through this.
09-21-2009, 05:56 PM
If you are barely eating anything, your metabolism will slow down because it thinks there is a famine. Sounds counter productive, but you have to eat enough to lose weight.
09-22-2009, 01:42 AM
I eat enough for what I do, which is nothing at the moment. I eat a few spoons/forks of what's on the plate here at the hospital three times a day and I eat a piece of fruit as a midafternoon snack. Can't do no special diet here, too complicated. I have learned about nutriton and proper dieting in these last few years, but I just couldn't lose the weight no matter what.. That is why I started searching what may be the medical cause and found.. a freaking tumor..
So now the tumor is gone but I now can't lose weight because of the steroids. I guess I will have to get over that eventually :( It's just sad, all I had to go through phisically and mentally and things are even worse now.. What did I ever do to deserve this.. I will never give up, but nobody is going to convince me weight loss is just simple math, at least not with me.
Hope there is someone else like me out there so we can try to overcome this together.
10-04-2009, 10:40 AM
Hi Khat. I am sitting here this morning searching for I don't know what that might give me some hope that I won't end up having to be lifted by a crane out of my house one day!
I was diagnosed with sarcoidosis and Addisons Disease back in May of this year and have been on a daily regimen of Hydrocortisone and Levothyroxine sinece then. I have gained a whopping 40 pounds since leaving the hospital and am totally miserable.
I have to say that I feel a bit better since starting the therapy but the weight is taking its toll now.
Everything I read here on the net says its virtually impossible to loose the weight while on the steroid....
Met a friend the other day who has the same thing going on and has found great success with something called AdreCor and taking the natropathic route instead of the medical path. Anyone out there have any input?
Waiting for a fix.....
10-05-2009, 07:08 AM
I don't know what to tell you I have been putting on the pounds since I came home also. It's so frustrating since I am really careful with what I eat and walk a lot (not allowed to do anything else yet).. I also have excess sodium and low potassium and my doctors are trying to figure things out.
How long will you be taking this medication? Do you feel hungrier than before starting it? Do you exercise?
I'm glad you feel better but I hope we can drop the pills soon and start losing this weight. I am sure it can't be healthy.
Have a nice week
10-08-2009, 06:06 AM
Just came across your thread randomly and it feels like i'm reading my own story. I was 21 when when i was diagnosed with a GH secreting pituitary adenoma. Post surgery I've been on hydrocortisone therapy for the last 4+ years. I have been struggling with my weight ever since and i've put on around 50 pounds. From my experience maximum weight gain happens within a year of being on replacement therapy following which your weight will stabilize. Weight gain is also followed by fatigue and in my case a general lack of will to exercise. Hydrocortisone also causes gastric problems & i would suggest you speak to your doctor asap if you do experience it as gastric problems only get worse over time.
I also went through this phase of self pity/anger as to why this was happening to me and the answer is luck/fate. There is no specific cause as to why pituitary adenomas occur, it is not hereditary or genetic it just occurs in a small % of the population. It is unfair, however it does not excuse us from other health problems.
My suggestion to you would be to try and monitor your weight right from the start. Report sudden weight gain to your doctor & also monitor your hormones every six months. The faster you can lower the dosage of your medication the lesser the side effects/weight gain.
I hope this helps. Have a nice week.
10-08-2009, 09:02 AM
Reading your post makes me both sad and happy at the same time. On one hand I am not the only one going through this but on the other hand I am really not looking forward gaining even more weight and the fact that I could end up taking these pills for a long time.
I am overweight to begin with (and really unhappy about it) and I don't know what will I do if I gain more... It is really effecting my life.. I've been strugling with it for so long it became my obssession. I know thats not healthy and I might need someone to talk to about that but it is the way it is. It might seem shallow or whatever but I was always the healhy, active person, not really skiny but never really fat.. I lost myself somewhere along the road and I seem to think that the only way I can get myself back is to lose this weight.. I thought I would feel differently about life after this serius suregry, maybe my priorities would shift. But they didn't. I still want to look pretty and go out with my friends, be successful in my career and personal life, have fun and live life to the fullest. Being fat just makes me feel disgusted, awkward, ashamed and basically not wanting to leave my house.. This whole situation is just depressing. I should be greatful I am alive but I am not, because I don't think I deserved to go through this in the first place.. I guess that makes me a bad person or whatever.. I am just venting because I am really feeling down lately.. Not suicidal or anything, just really sad :(
10-09-2009, 07:55 AM
I know exactly how you feel. I went through the same ordeal, i guess i still am going through it. I had the same issue with weight even before i fell sick & what i learned is that the weight struggles are due to the tumour. Trust me when i say that things could be worse, a lot worse than it is. The one thing i've kinda learned to deal with is the feeling of being given the short end of the stick. I know it sucks, and that you don't deserve to have to undergo this but the fact is it has happened & you have got to deal with it. Life goes on & it will not wait for you, so don't stop doing the things you want to do. The only one stopping you from having fun & living your life is you. The worst thing you can do is to give up. You've got to try & be positive, It's going to be hard but you've just got to try and pick yourself up again. I probably am not the best person to say this but the side effects & weight gain associated with hydrocortisone can be controlled if not beaten, but the sooner you act the easier to control it, i didn't act soon enough hence the uncontrolled weight gain. So don't lose your obsession to be healty & fit, channel it, the obsession could be your best friend. Keep your chin up. :)
10-09-2009, 08:27 AM
Khat, I'm so sorry you are going through this. I have had my own share of endo problems but have never been on steroids. My advice is just get better. Worry about getting healed for now. I know this is not what you want to hear and your worried about more weight gain and I'm sure it is inevitable until you get your levels worked out. But eat right and exercise and then you will know that you did what was in YOUR power to control your weight. Our body needs hormones for specific functions and they are intertwined. As I'm sure you have been told they all affect one another.
As far as the natural route that was suggested, I would advise against it. I work in the nursing field and have seen many people try to control their endocrine systems with supplements. If your gland is not producing a specific hormone it needs that hormone to be replaced. The supplements try to enhance the production of the hormones, which if it does really work does no good on a gland that isn't functioning!
Anyway those are my thoughts. I wish you all the best and try to be optimistic. Patients who have a good outlook on life and their recovery tend to do better in the long run.:hug:
10-09-2009, 06:43 PM
Thank you both for your encouraging words.
I know I have to get over it and eventually I will. I do have friends and family who love me and take care of me but I don't talk to them about this stuff because they never really understand so I don't bother bringing it up anymore. I am young and I have high expectations of life. I won't give up. I did have some forbidden stuff this past few days but I didn't eat ice cream since August so I guess I can forgive myself. I will take the medication until the doctors tell me I can go off, I am not thinking about any natural way but I will see a specialist that uses traditional chinese methods, nutrition and yoga to help people with endo problems get some relief and sort of assist with the medication we are taking, maybe relieving some symptoms.. He does not expect us to abandon traditional medicine and just drink some tea or whatever :) I think that would be good for me. It's all really organic and super healthy. May be hard to actually eat like that every day but it might work. I am certainly interested in what he has to say. I'll keep you guys posted.
And thanks again for the kindness :hug:
10-13-2009, 06:21 AM
A little update.
I got my diet today and it's pretty harsh. I am willing to give it a try but I hope it won't be to difficult. Here's an example for one day:
fresh fruit or vegetable juice
green lettuce with lemon juice and olive oil
veggies or fruit or some yogurt or soy milk..
It's a lot of fruit and vegetables, no portion limits. No meat, fish, eggs, milk, potatoes, tomatoes, peppers, egg plant, white flower, sugar, mustard, peanuts, bananas, vinegar.. I can have beans and grains but not more than 30-40% in every meal. I don't mind the healthy food, I like eating it. I just don't know how to incorporate this into my lifestyle. If I had a chef, a personal shopper and I could finish my diploma from home this would be easier :) He also suggest daily exercise, preferably in nature, which won't be a problem since I live next to a freaking forest :D
What do you guys think? Too harsh? The doctor comes highly recommended from people with hormonal issues (mostly thyroid) not just looking to lose weight but to get healthy. I should stick to this for 3 weeks. Don't know what comes after that.
Maybe I should start a log to keep me motivated. I am pretty excited to try this.
10-14-2009, 06:38 PM
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!!!(:(
11-11-2009, 11:38 PM
I'm on steroids for asthma and COPD. I deal with the hunger byalways having veggies ready to eat and planning my meals and snacks in advance and sticking to the plan. What we are dealing with is head hunger, not true body hunger.
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;)
07-03-2010, 07:00 PM
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.:?:
09-08-2010, 04:12 PM
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.
09-08-2010, 04:56 PM
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?
10-05-2012, 08:06 PM
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! :bravo:
10-05-2012, 08:13 PM
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!
10-14-2012, 05:19 PM
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.
11-10-2012, 01:31 PM
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!
12-21-2012, 01:08 AM
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!
01-04-2013, 06:58 PM
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?