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Old 09-18-2009, 08:23 AM   #1  
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Default Hydrocortisone and weight loss

Hi everyone..
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.
K.
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Old 09-18-2009, 10:08 AM   #2  
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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.
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Old 09-18-2009, 12:20 PM   #3  
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Also, remember that you are replacing steroids you're deficient in, not adding steroids to treat an different condition.
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Old 09-21-2009, 08:15 AM   #4  
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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.
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Old 09-21-2009, 11:54 AM   #5  
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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.

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Old 09-21-2009, 04:56 PM   #6  
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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.
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Old 09-22-2009, 12:42 AM   #7  
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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.
K.
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Old 10-04-2009, 09:40 AM   #8  
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Default I'm in your boat!

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.....
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Old 10-05-2009, 06:08 AM   #9  
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Hi localgal61.
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
K.
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Old 10-08-2009, 05:06 AM   #10  
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Default On hydrocortisone therapy for the last 4 years

Hi Khat,
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.
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Old 10-08-2009, 08:02 AM   #11  
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Hi.
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
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Old 10-09-2009, 06:55 AM   #12  
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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.
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Old 10-09-2009, 07:27 AM   #13  
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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.
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Old 10-09-2009, 05:43 PM   #14  
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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
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Old 10-13-2009, 05:21 AM   #15  
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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
apples

sunflower seeds

green lettuce with lemon juice and olive oil
vegetable soup
steamed broccoli
tofu

fruit

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

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.
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