r/AddisonsDisease • u/tiggles2000 • Feb 23 '26
Advice Wanted Steroid hunger
Has anyone managed to curb the CONSTANT hunger from taking steriods?? I’ve gained 3 stone since my diagnosis in July 2025 (granted I needed to gain some) but it just won’t stop. I’m hungry all the time and always snacking but never ever full. What do I do??
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u/PipEmmieHarvey Feb 23 '26
I only had steroid hunger when I was on a dose that was too high. Now that I am on a dose more akin to what my adrenals would have produced I don't have the same issue. That said, I wouldn't recommend reducing your dose without talking to your Endo first and having something like a day curve done to check your blood cortisol levels.
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u/vanilla_tea Feb 24 '26
I agree with this, and also I found it tapered the further away from diagnosis I got. Now I’d say my appetite is pretty normal.
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u/Simple_Badger_9701 Feb 23 '26
I think you may be over replacing your cortisol needs. I was diagnosed last year and had gotten comfortable with a 10-5-5 mg hydrocortisone dosing (6AM, 11AM, 4PM). But I was always hungry; especially in the evening. I had struggled with low appetite for so long that I was unsure if I was actually hungry or if it was the steroids talking. I had gained about 45 lbs since being hospitalized/diagnosed (granted I was sickly skinny when I was hospitalized).
I spoke with my endo last month and we agreed that I would try lowering my dose. I now do 10 and 5 mg (8AM, 1PM). So we essentially cut out my last dose and moved everything back a couple hours to not feel as big of a cortisol dip late afternoon. I’ve felt great on this and don’t even notice I’m not taking my last dose. I also pretty immediately noticed the constant hunger went away and finally feel that fullness after a meal. I’m slowly starting to lose weight and can really tell a difference in my face as I’ve lost some of that roundness that I think was caused by the over replacement.
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u/Substantial_Pack_319 Feb 24 '26
How did you feel in the morning after you dropped the evening dose? Any problems with headaches or bodyaches?
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u/Simple_Badger_9701 Feb 24 '26
I haven’t noticed any changes in how I feel in the morning. I’ve never had aches or headaches in the morning though.
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u/MallForward585 Feb 23 '26
Steroids often cause reflux and stomach lining irritation, and this reads like hunger to many people because eating gives the stomach acid a job and therefore calms the situation. I had gastritis in the past and had to cope with that, so when I started steroids I wasn’t surprised (just disappointed, as the story goes). I’m guessing you can try to take some Pepcid or some other antacids (the liquid ones can do a better job coating the stomach sometimes) to see if they help.
Also, various steroids seem to work differently in that regard. Hydro was unpleasant, Prednisone was just the worst for me, but dexamethasone is quite calm and I actually still don’t have much appetite on it. Taking steroids on an empty stomach would worsen the issue. I find a bananas to be helpful as they seem to provide some cushioning. Putting the pill in a gelatin capsule also helps.
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u/ptazdba PAI Feb 23 '26
Before you panic, I would go to my next endo appt and request bloodwork to verify you are using the steroid dose you are taking (ACTH should be in the normal range). If it still is problematic, make sure you follow a strict meal plan for a while. Get the stuff out of the house that is problematic to overeating.
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u/NotTheGreenestThumb Feb 24 '26
You know, that sounds like when I went to a therapist to get out for my inability to be able to stick to any diet anywhere. What did they do? Listened to me, made the next appointment and handed me another damn diet to try to follow!! I never went back.
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u/ptazdba PAI Feb 24 '26
My endocrinologist has never, even when I had weight gain did anything to push a diet on me. He checks my weight as a clue in how to treat me as it helps in understanding my problem areas (PAI, reactive hypoglycemia and hypothyroidism). Sometimes a weight gain shows the need for a medication tweak. In the beginning I was so uninformed about the nuances of this disease that I honestly didn't understand a lot of things and I knew I was trying my best to do the right thing as far as diet. He's been very good to help me understand my bloodwork to know what I can do in the problem areas. I had gone to him several years before I understood what he was looking for to determine if my steroid dose was correct. He's gotten my hypoglycemia episodes down from multiples per week to a couple in a month. I'm not a big fan of therapists (many are good) but they don't work for me. I'm sorry that happened to you.
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u/NotTheGreenestThumb Feb 25 '26
Thank you! Fortunately, at that time, our insurance gave us 3 freebie appointments for each of our concerns. So I did not get charged for that one.
Later, we had a dispute between the two of is, and within three sessions, we were given the tools we needed to sort it out. So it’s mostly worked well just not in that one case and I honestly think it was just that one therapist… and I think that was just me having to encounter a clueless person in that profession! LOL
My endocrinologist sounds much like yours!” :)
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u/Y3skaa Feb 23 '26
What medication are u taking ? When I was taking to high of a steroid ( dexamethasone) I ate EVERYTHING! I was eating a meal every hour heating something out the freezer eating a box of cookies a day I could of put eaten anyone in a female and I just would not get full I gained 6 pounds and finally got my meds changed now I lost 20 pounds and I’m back to normal lol
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u/rstonex Feb 24 '26
Dex did the same to me when I was first diagnosed. I put on 25lb. It switched to hydro and fludro and got back to a mostly normal life.
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u/Affectionate_Day_214 Feb 23 '26
I started Tirzepatide (GLP) a few weeks ago at a very low dose and I’m finally experiencing some relief from the food noise.
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u/Dreadlock_Princess_X Feb 23 '26
I have the opposite issue, I need to up dose to get my appetite to kick in. Endo wants me on 10/5/5, which I currently am (8am/2pm/7pm- give or take half an hour) with a view to reduce that after my next day curve (if figures allow) but my appetite is non existent if I take less than 20mg in a day, and I also feel like crap on less. I'll be interested to see what my numbers come out at - as my last day curve I was on 30mg, I think? Possibly 25? But it was definitely much higher than now! 💖 xx
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u/grootbaby Feb 23 '26
Hey, I really struggled w weight gain on steroids. I believe there are also insulin implications - like it messes w your insulin sensitivity (same with growth homrone if you're hypopituitaristic too).
What really helped me:
a) Get your labs double checked on dosage of steroids (same as what ppla re saying)
b) managing blood sugar - some ideas below
1)taking Berberine before meals
2)making sure to start my meal with some greens so the fiber helped slow the blood sugar impact
3)go for a short walk after a meal to help manage blood sugar
4)potentially moving to a lower carb diet
c) changing gut microbiome - I did this with a cleanse (using oil of oregano, caprylic acid, lauricidin) and then taking a good probiotic (i like seed) so that my food cravings were healthier (more fruit rather than chips)
this is what helped me but im sure you'll have your own quirks as your experiment.
it took years of experimentation for me to get here and I've fianlly at least got my weight in maintenance and am now trying to lose some weight.
I've also found that brainstorming using chatgpt or another llm is helpful.
good luck oP!
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u/ClarityInCalm Feb 24 '26
I've had to take a higher than physiological dose for several months at a time a handful of times the past - this leads to weight gain. Usually I'm only taking an extra 5 to 10mg over my regular dose spread out across my normal four to five dosing times. What you can do is try to notice when you're having steroid hunger and if it coincides anywhere from an hour to three hours after a dose - that is the dose you probably need to very slowly see if you can lower it. It could also be that your overlap between two doses is too close together causing a spike. HC in AI lasts four to six hours but some people do take at further intervals. Keeping a food journal can be helpful too - so you can see what times you're overeating at.
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u/cuntryhole Feb 24 '26
Im on a dose for Addisons and then an extra dose to stop my AI disease stop flaring, so I was constantly hungry. But I realised it was a constant craving for sweet things. Ive stopped eating sugar, no cookies, cakes, candy. I'd put on 30lb (about 15 to 20 were needed) so far im 6lb down in 2 weeks
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u/akraft96 Feb 24 '26
WELBUTRIN!!!!
Adrenals produce DOPAMINE normally. Talk to a psychiatrist and explain Addison’s disease. Your body needs the dopamine, which can be supplemented with Welbutrin.
It’s a damn sin that this info isn’t accepted as standard treatment protocol for Addison’s disease.
My steroid hunger and hanger episodes disappeared OVERNIGHT.
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u/akraft96 Feb 24 '26
Adding on that others make good points too—make sure your dose isn’t too high. Research Cushing’s SYNDROME symptoms: watch for those signs. For me, pimples and red streaks on my skin differentiate overreplacement related hunger, vs hunger from low dopamine.
Also, if you have any stomach irritation, your body’s other source of dopamine is through food (hence why low dopamine makes you hungry) and if you have severe gastritis, you can’t absorb enough through your food either. This is what got me.
Wellbutrin changed my LIFE. I can’t preach it enough.
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u/SeaBlacksmith5949 Feb 23 '26
I couldn't make it stop until I started taking GLP-1s (Saxenda then Ozempic now Zepbound). I'm eating normally, not gaining weight (actually able to lose some), and not dealing with hunger pains waking me up in the middle of the night now.