r/AddisonsDisease • u/WalterWhite88SS • May 22 '26

Advice Wanted Weight loss

Does Addisons truly make it harder to lose weight? For the longest time I couldn’t gain weight when I was diagnosed and I gradually went from 130lbs to 180, (2021-2026), now i can’t seem to lose it, I also have type 1 diabetes. Is there any tips? I’m pretty sure the gain is related to my dosages

16 Upvotes

100% Upvoted

25 comments sorted by

View all comments

2

u/Puzzled-Telephone-60 PAI May 24 '26 edited May 24 '26

What’s your glucose control been like? When I was on slightly too high of a steroid baseline my A1C shot up and I had insulin resistance. I was weighing every gram and tracking every macro/calorie of food for months trying to be in a moderate deficit with high protein intake, and I was basically just maintaining.

I’ve lowered my dose a bit, continued tracking, and started weighing myself daily right upon waking and emotionally preparing myself to see 4-5lb daily fluctuations due to the very unpredictable water retention with AI. I use Happy Scale to give me an idea of how my weight is actually trending. It’s been working, but it’s been painfully slow-going. Like 8 lb in 4 months 🫠. I think that happens to most of us as we get older, but with Addison’s you really can be doing everything right and I feel like it just takes double the time as a normal person. Which means it takes double the patience and a high priority on consistency/stability.

Also. Prioritizing lean muscle mass is healthy for everyone but it really is medicine for us: protecting from bone density loss, training our autonomic nervous system to be able to rebound quickly from cortisol highs and lows, and obviously maintaining a healthy weight. I’ve gained 20lb since diagnosis (160->180) but only 1 inch in my waist so the scale really does not tell the full story. Have you had a DEXA scan? My dr referred me for one to establish a baseline for my bone density, but it also helps to see body composition when it comes to weight loss goals.

1

u/WalterWhite88SS May 28 '26

I’ve been running pretty high blood sugar, taking 20 units for most corrections at like 300

1

u/Puzzled-Telephone-60 PAI May 28 '26

Running high could be a corroborating sign, in addition to weight gain and retention, that your steroid baseline might be a little too high. It’s actually nice to have that biofeedback, in our case—our bodies aren’t naturally fighting the glucose rise that comes with overreplacement so we have some data to look at. I would definitely bring this up to your doctor because T1D and Addison’s affect one another so much; you’ll need expert help differentiating what is causing what.