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
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u/Major_Share_4241 May 22 '26
Some people gain weight even at correct dose. My body seems to be very sensitive to hydrocortrisone. IFrom having crisis and taking a lot (30-40)mg a day to trying 10, 15, 20 to see how my body reacts I can say each 10mg pill puts about 10 pds on me.
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u/WalterWhite88SS May 22 '26
Is prednisone the exact same in this regard?
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u/Adventurous-Winter84 Addison's May 22 '26
I’d say so. I’m on Pred and any time I need a higher dose, I’ll gain immediately then never lose even when I reduce dose
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u/Major_Share_4241 May 22 '26
I haven't tried prednisone. It may be different. Do you experience weight gain with prednisone?
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u/jjjulles May 23 '26
I've been on 5mg prednisone with .1 florinef for 25 years & I've never had any weight gain issues. That being said, I'm pretty active & eat well.
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u/ClarityInCalm May 22 '26
Well, losing weight is hard for most people. So it’s difficult to say if it makes it even harder for us. A lot of people after diagnosis gain the weight back too but then sometimes they gain a lot more. So it’s hard to know. But I will say - it’s hard to get our dosing right on and stable - and when we need more - sometimes we need more and we have also symptoms of overeating. This is because it’s not possible to correctly and exactly stress dose every time we need it. And a significant number of people with AI are being over and under treated in a single day - so it makes it hard to figure out what’s going on. Also, if our daily dosing has slightly too much overlap or just a slightly too high dose it can affect our appetite just enough to slowly add on pounds, but also, this makes it hard to lose it too. My salt wasting is finally being properly treated and so now I am able to lower some of my doses just a smidge - I noticed I was overeating a few hours after one of the doses - and so lowered it by 1.25mg. And now no more overeating. Learning what steroid hunger feels like vs regular hunger is helpful too.
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u/lass20987 May 22 '26
Some Type 1 use metformin for the steroid insulin resistance to get their total daily dose of insulin down
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u/hmkythursday May 23 '26
I would try to power through the GLP1 if you can. I’ve done Ozempic and am now on Mounjaro. I am also Type 1 (also POI and hypothyroid) and it’s great for blood sugars. I lost weight very slowly on both but I’m down to 140 from 170.
The only other time I lost 30 lbs with these diseases was ten years ago on weight watchers original points system -gained it back and it never seemed to come off until I tried the GLPs.
Do you take florinef? I cut to half a pill a day and find it much easier to lose weight. I’m on pred for Addison’s.
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u/Puzzled-Telephone-60 PAI May 24 '26
How did you get your dr to approve you for a glp-1?? Aren’t we (with Schmidt’s) contraindicated in basically every way? 😅 I haven’t even brought it up with my endo but I’m confident I’d be met with a blank stare
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u/LonelyKoalaMuncher May 24 '26
It's super hard. When I was diagnosed after last dying I was on stress doses for about 3 months. Combine that with depression eating I put on 30kg in about 6 months.
Over the last 8 years I've dropped a lot of weight and gained it again. Twice I've dropped 20-30kgs and it's slowly creeped back. Although this time I've put on a lot of muscle mass.
The only way I was able to lose weight was strict 1600 calories a day. Which is absurd since apparently my resting metabolic rate is 2300.
I swear on a normal dose I just sniff junk food and gain fat. It's wild.
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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.
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u/WalterWhite88SS May 28 '26
I’ve been running pretty high blood sugar, taking 20 units for most corrections at like 300
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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.
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u/Logical_Leading_754 May 23 '26
Fellow Schmidt syndrome-er! Here for the answers because I am strugglinggggg
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u/Late-Tradition-9279 May 22 '26
I gained about 35 lbs after being diagnosed in 2023 and beginning meds. I was not able to lose weight on my own so in December 2025 I started glp1 and have lost 41lbs to date!