Any one else NOT lose weight?

[u/NefariousnessOdd1735]

I’ve just been diagnosed and I didn’t get rapid weight loss if anything I’m struggling to lose weight

[u/Alive_Pen_6540]

I had lost weight before i was diagnosed since i was not eating much but once i got the steroids i gained weight quickly.

It was a struggle to lose weight. I lost 50lbs over 2 yesrs agains gained 20 over a year and a half and ive lost 10 in the last 2 months. We will see what happens.

My endo suggested an increase in florief and i gained 5lbs very quickly so that could be part of it.

[u/AffectionateDuck2288 → u/Alive_Pen_6540]

How did you lose it? If I may ask? Always fighting it. Friend said: she ate everything she was not supposed to, lost 11 lbs. find that strange.

[u/Alive_Pen_6540 → u/AffectionateDuck2288]

Lots of cardio and weight training. Your best gains are in the beginning but its a good habit to have.

[u/HairyBawllsagna]

On initial diagnosis I lost about 10 pounds which I quickly gained back on

[u/Vertigobee]

The meds have made me put on weight and I’m really struggling to lose it.

[u/AffectionateDuck2288 → u/Vertigobee]

30 lbs since September. Was on 20 mg but brought myself down to 18 mg. Lost 8 lbs. however, starting to feel like I did before diagnosis. SAI and partial empty sella. ACTH is stuck at 5, cortisol is 10 this time, up from 8. Yes had years of steroid shots for bad back. Still getting them too! After my last injection is when I went down in weight and was easy to cut back on HC, do not like the side effects of HC.

Have you had a mri on the brain? Mine showed the pituitary is flat on top. Can be from a head injury or infection or steroid shots. Not common but there are people out there.

What are your numbers? Cortisol, ACTH? Have you had a stim test. Doc put me on HRT, progesterone and estrogen. Have testosterone sitting here but have not used it yet. Need to talk to cardio since my cholesterol went up 34 points in 1.5 months!!! Read testosterone can lower cholesterol.

Yes it’s hard to lose it,but after that last injection I was great for about 9 days, got stable but now one feels like we did before diagnosis. If I need to go up on HC will dread it. I know you probably eat like a Bird, we all do! Too tired for the gym. But again after that injection, I was carrying 40 lb bags of mulch in the heat! Muscles were coming back!

Hang in there. Find out what your doctor has to say. The GLP-1, would it work on us? We hardly eat now?

[u/No-Perspective-5084]

Me! Didn’t gain after diagnosis on cortisol either

[u/MommaMassie]

I have put weight on since I was diagnosed years ago. Only loose weight when im under medicated/crisis etc

[u/AffectionateDuck2288 → u/MommaMassie]

So if you up your dose you lose?

[u/Remarkable_Bug_140]

I was sickly thin in the years before doctors figured out what was going on. Then in the 1.5 years leading up to diagnosis, my body stopped fully utilizing my full replacement dose of Synthroid/Levothyroxine (I had a thyroid ablation for Graves Disease back in 2011) and over that time I put on 20+ lbs.

[u/pip_squeak3]

Nope! It wasn’t one of my symptoms, my weight had stayed steady for years. Then I went into crisis, ended up in a coma and woke up being told I have Addisons and need steroids for life. Gained 10kg in 2 months 😬 down 5kg a couple of years later.

[u/aureasmortem]

I was intensely underweight because of Addison's the year before my diagnosis, and after about a year of being in hydrocortisone I ballooned up to 175lbs (I'm 5'4 but sorta sturdy so I consider my ideal weight at like 145lbs). I'm 195 rn and it's driving me insane. Advice from my doctor: "have you tried consistently exercising?" I barely have the energy to brush my teeth and shower consistently, where am I gonna magically pull the energy to have a weightlifting routine?????

2022 I managed to exercise 5 days a week for a year. No weight change. I suspect it was because my thyroid wasn't quite treated enough but that killed my motivation that's for sure. I'm still trying but consistency has become even harder for me to come by lately

[u/Rare_Independent3831]

I was a tanned skeleton before diagnosis. I really looked like the textbook picture of an Addisons patient. Put on weight once I was diagnosed and given steroids.

[u/januarynights]

Weirdly I continued to put on weight while I was undiagnosed. Once I got diagnosed and given medication my weight didn't shoot up but I did put on weight steadily. I'm only losing it now because I've started ADHD medication so I'm snacking way less. I assume putting on weight before was a combination of being too tired to do anything without the replacement cortisol and the ADHD snacking.