Any fellow Addisonian's?

clhill78 · July 2017

I was recently diagnosed with Adrenal Insufficiency (Addison's Disease) Since diagnosis and starting my steroids 3 months ago, I have gained 35lbs and am still gaining. I'm hoping to find someone else out there with AI that has been successful at losing the excess weight while on corticosteroids.

yirara · July 2017

I'm sorry for your diagnosis

I've been on steroids for a while for something else, and it was difficult to get off them. One thing I noticed is that my waterweight went up quite a lot. There's nothing you can do about that unless it's really a lot and is causing you problem. Then you really need to go back to your GP. Other than that they did cause hunger, and if I had not been so sick at that time I probably would have given in and just eaten. Those two are really the reasons why people gain weight on steroids: water and hunger. Thus I'm afraid you will have to fight extra hard against those cravings and to lose weight again. It can be done though once you realise it. Good luck!

clhill78 · July 2017

Thanks Yiyara. Unfortunately not taking the steroids is not an option for me as I am steroid dependent and need them to stay alive. My hunger has increased greatly. There are also a lot of restrictions and differences from a normal persons diet like we need a lot of salt for example. That's why I was hoping to find some others with the same disease who have had success losing weight. It is definitely going to take fighting hard for little gain but that's just how it is. Thank you so much for your support.

yirara · July 2017

Just sending you some love and pushing this thread up again. I hope there are other people on pred or with addison in general who can share their experience.

Have you tried other types of food that might help with your hunger better? More carbs, more slow carbs, protein or fats? Maybe there's something for you that makes your life easier.

clhill78 · July 2017

Thank you! I am actually on Hydrocortisone. I know there are many of us on Prednisone too. I also have Hypothyroid due to this disease so honestly I have no idea what the best options are. I know they have said sugars, including fruit, aren't good for us in the A.M. which goes against everything I know. Need high sodium but have to watch that we don't get too much potassium which many vegetables are high in. I'm newly diagnosed so I am really still in the learning stages. I have just been taken back by how quickly the weight came on after starting treatment.
It's a rare disease, 1 in 100,000, so I know not many have it but I was really hoping there were some others here. I shouldn't have to just resort to being obese. The extra weight can't be helping my issues any. I worked so hard to get it off before then lost a lot of weight from being sick and now it's crazy how fast I'm gaining.

brendak76 · July 2017

My 17 year old son has Addisons and type 1 diabetes. He's on prednisone and florinef for Addison's. I'm sure you know that symptoms of Addison's are weight loss and lack of hunger or nausea. My guess is that now that you are on medication, your body is catching up to where it wants to be and will level off once the medications are adjusted correctly. Type 1 diabetes is the same way right after diagnosis. It's common to gain weight right after starting insulin because your body is catching up to what is was lacking before.

Once you are on the correct medication dosage you should be able to lose weight normally. My son has been able to gain and lose weight normally now that he's stable.

brandyjones1991 · July 2017

My husband is adrenal deficient, he had surgery last June to remove a cyst from his pituitary gland. He takes hydrocortisone, synthroid, and testosterone. He's lost over 30 pounds in the last couple of months. He hasn't done anything different than I have other than he eats a lot of frozen meals like Smart Ones and Healthy Choice. He probably gets way more protein than me as he normally has a protein shake for breakfast, a frozen meal for lunch and snacks on peanuts. I'm sure that helps with his hunger. It is possible! Just hang in there! I actually think the steroid has helped him with his weight because he feels so much better taking it. Before he'd just come home and crash.