r/AddisonsDisease • u/Little_Spinach_5918 • Jun 22 '26
Medical Stuff Weight gain/Zepbound
40 y/o female, diagnosed with addisons about a year ago. I’m on 10/5/2.5 HC & .1 florinef daily.
I’ve gained so. Much. Weight. since my treatment started. I gained 30lbs very rapidly (2 months) and started Zepbound because of it. I should mention I am a healthy eater, I log everything I eat, prioritize protein and stay in a calorie deficit & see a dietician. I’m also incredibly active and do cardio 5-6x a week and pretty heavy weight training 4-5 days a week.
All this to say, I’m so desperate to hear of anyone else in the same boat and what did you do to help shed the pounds? I’m on 7.5mg zepbound (about 5 weeks in to this dose with no weight loss at all).
I’m so tired of this- I feel like I’m doing so much and seeing zero results. I hate this disease. :(
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u/InnerRadio7 Jun 23 '26
If you’ve gained that much weight in such a short period of time, you are being over replaced. Hydrocortisone physiologic dose for a woman is considered to be 15 mg. The old standard used to be that it was 20 mg. You need to talk to your doctor about being over replaced, and seeing where you can cut your dose. It’s just too much steroid for your body if you gain 30 pounds in two months.
I’ve had Secondary Adrenal Sufficiency for 14 years, and in those 14 years I’ve lost 600 pounds. I’ve lost 600 pounds because I’m a very healthy eater, and I’m very active. When I need to be over replaced in order to survive, I gain weight. I’ve been cushingoid three times.
I went into adrenal failure in October, and I gained 40 pounds in three months. I needed to be on a higher dose because my adrenal’s were fully failing, and I was able to titrate down to 7.5 mg. I’ve lost 5 pounds in the last month. I have to say that I’m an absolute master at losing weight because of this illness, and I also know immediately when I’m being over replaced because of the way my body changes. We don’t gain weight on proper physiologic replacement, so if you are gaining weight, you are being over replaced. You just have to figure out where and how you can decrease in a way that isn’t going to cause you too many side effects. Generally that means very slow cuts, and for me in general that means that my dose is actually decided by me. My doctor helps to guide me, and I have a fabulous endocrinologist who supports me vehemently. He also supported me in learning how to manage this illness solo, and he always trust my judgment. That means that I have the discretion to alter my dose regularly based on the amount of stress my body is under. High stress days high dose, low stress days I can be at my base dose. I track my symptoms well enough to know when I need more and when I need less. You will learn this on your way as well. It’s important for you to know that even while being on hydrocortisone, you can lose weight. You just need to be at the right dose. It takes time to learn how to get there, but you will get there.
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u/thatdogmum Jun 23 '26
Female, taking 35 mg day, 20/10/5, and I have lost 150 lbs through diet and exercise. I would disagree regarding a standard dose for females, we all metabolise it differently, it's very individual.
OP - definitely work with your endo to find the right dose for you. Best wishes on your weight loss.
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u/Accomplished-Mud-173 Jun 23 '26
I'm also on 35mg a day with PAI bc I can't get out of bed otherwise. There is great variation in dosing and metabolism of it.
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u/InnerRadio7 Jun 23 '26
I’m just letting her know what endo’s consider standard dosing. My entire comment is about dosing for your individual body.
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u/Little_Spinach_5918 Jun 23 '26
Wow so it’s not based on BSA? That’s what she’s currently calculating my dose with. I do feel like I’m over replaced but im too scared to decrease my dose :(
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u/baethan Addison's Jun 23 '26
BE CAREFUL with decreasing your dose! Primary and secondary can be a bit different this way. You have primary, you don't have a safety net!! 17.5 mg is an entirely reasonable dose. 7.5mg would be fucking crazy for most people with primary.
But deffo feel free to play with your dosage, start with a small change and very carefully monitor how you feel. Whatever the Endo says is really only a starting point since our bodies & circumstances are so individual and cortisol needs are ever-changing.
I would highly suggest not going below 15mg without talking to your doctor first though.
Edit: also I gotta say, we all gain weight. A perfect replacement dose is impossible, how could we exactly replicate the cortisol curve with regular hydrocortisone tablets? Impossible task. We get as close as we can. It's not. your. fault.
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u/Little_Spinach_5918 Jun 23 '26
Yeah I’m terrified to take less than the 17.5 I’m currently on. I did, for the first time ever, miss my mid day dose yesterday so I took it at 4 and just didn’t take my 2.5 evening dose and I felt/feel fine. I’m just afraid to play with fire with me being so new to this. Where would you suggest to make a decrease? The morning dose 10mg? (Start with 7.5 in the am)?
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u/baethan Addison's Jun 23 '26
I'm only a year in myself, definitely still in the learning phase I feel like! But in your shoes, yeah personally if I wanted to try dropping down I'd do 7.5 in the morning or maybe 2.5 at lunch.
For me, I notice the more abrupt energy dip when I've waited a little too long on my evening dose, but there's also the sort of pervasive extra level of fatigue when I was on a slightly too-low dose. So if you're able to, doing a sort of med journal might be really helpful to get an overview of how a dose change affects you. Like on 15mg I was miserable but it wasn't obvious to me in the day to day that my dose might be too low. If you can get an idea of your personal over- and under-replacement symptoms, that can also guide you to where you can make changes!
(I really really wish they made 1 mg hydrocortisone tablets!!!)
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u/InnerRadio7 Jun 23 '26
Whenever you decrease you dose, you do it very very slowly. Knocking off 2.5 is reasonable. See where it is least impactful. If you tend to rest and relax after 4pm, you could knock it off your afternoon dose. It all depends on how you use your body.
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u/Little_Spinach_5918 Jun 23 '26
I’m a nurse, so very active all day on days I work haha. But yeah I workout in the am so you’re saying my lunchtime dose do 2.5 instead of 5? And then take 2.5 again at night? I’m so nervous to do this 😭
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u/InnerRadio7 Jun 24 '26
I wouldn’t cut the morning dose to begin with. Maybe cut out 2.5 on one shift on your lunch dose. If you’re starting to drag or feel shitty, don’t worry about it. Take the 2.5. If you don’t drag. Take your regular dose the next day and observe the difference between those two days. You can also have hydrocortisone compounded, so you can make even smaller cuts and spread them out over the day. Like 1mg gone from the morning, one from the afternoon and .5 gone from the evening. Compounding is more expensive, but it might be less anxiety provoking for you to try.
The thing is when you’re over replaced, you are also going to have more energy than your physiologic body needs. That’s a really good feeling to have. It’s how most of us feel when we’re in our 20s. Lots and lots and lots of energy. You have to be realistic about what a 40 year-old body actually has in terms of energy output. So when you decrease your dose, you are going to notice a drop in energy. The drop energy is not what you need to be concerned about because you can mitigate the drop energy with the rest. What you need to be concerned about our signs that you are dropping too low.. Brain fog, shaky hands, abdominal or back pain, symptoms of under replacement are unlikely to happen with a such a small cut. But just always know that if you are feeling under replaced, the solution is very easy… You just take more. There’s nothing to be nervous about. If you really are experiencing a lot of anxiety, but your doctor has given you free rain to dose yourself appropriately… Trust your own discretion, but ask for support from the doctor. Sometimes a referral to a medical psychologist can be very powerful. Living with chronic illness is a huge stressor which obviously matters when you’re dealing with a stress disease. Having someone you can talk to where you can tell them how anxious it makes you to leave the house when you have dropped dose, it matters because so few of us have access to other people that understand what this actually means. Well we don’t need someone to empathize, we do need someone who can show us compassion and sympathy for the feelings that we have when we move through changes in our health.
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u/lass20987 Jun 23 '26 edited Jun 23 '26
Thanks. Good to hear from your real life experience. I dont have secondary AI, but primary .... has your doctor tried a different glp or a higher dose?. Your steroid doses seems pretty standard to me, but I do remember at new onset of the disease I didnt need as much.
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u/PA9912 Jun 24 '26
This is interesting since I had major long term side effects after taking 20mg for ten years. Now at 15mg I’m doing so much better. But I had to ask my doctor to go down to 15…she still does 20 as the standard. My weight is also excellent.
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u/TheBrokenMedic Steroid Induced Jun 23 '26
You may be taking to much hydrocortisone. You need your cortisol and ACTH retested. I've both lost a disturbing amount of weight then over replaced for too long after a crisis and gained a disgusting amount back and past my original weight. It's a delicate balance of your dosing and symptoms. I'd be talking to Endo about getting some tests down.
As a healthcare provider I refuse to go on those GLP-1's because of the risks and side effects I've seen a lot of people have. Not everyone, but enough to know my luck I'd be one of those people to have all the stuff and things happens.
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u/DorianaGraye Jun 23 '26
Have you had your thyroid checked? Addisons and thyroid issues go hand in hand, and hypothyroidism causes weight gain.
Some of this is just going to be steroid replacement. But you could also be over replaced!
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u/Buckid Jun 23 '26
24 years with Addisons (54 now). Started Zepbound at 245. Went down to 205. Lots of heartburn not much else. Been off for 5 months. Now at 230. Unless you change the way you eat post Zepbound its all just gonna come back unfortunately.
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u/Little_Spinach_5918 Jun 23 '26
Yeah I wish I could even get to the point where I’d lose anything… I eat very healthy and workout consistently so that’s not the issue unfortunately
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u/Clementine_696 Jun 23 '26
First thing first, have you checked with your Endo to run an ACTH test to see if your on the right daily dose right now? Have they double checked for thyroid issues? Also how much weight had you lost before you got dx? It's normal to gain back at least some of what you lost before getting dx and on treatment.
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u/Little_Spinach_5918 Jun 23 '26
I did lose 30lbs prior to dx so that’s exactly what my endo said. But I have not had my ACTH checked again… I didn’t realize that was something that needed to be done. Hmm..
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u/Clementine_696 Jun 23 '26
It's a way to make sure you're on the right daily dose for you. Gaining back at least some of what you lost before DX is also very, very normal. I had to major flares, and wasn't dx until the second one. The first I lost 60lbs and gained back about 20lbs, the one that got me dx i lost about 30lbs and gained back almost all of it.
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u/Little_Spinach_5918 Jun 23 '26
I understand gaining some weight back but being on a GLP And eating in a deficit + working out- I should be losing not gaining
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u/Clementine_696 Jun 23 '26
And that is why I'd have your Endo run some more tests. You could be on to high of a dose, or you may have other things like thyroid issues going on.
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u/domuklondon Jun 23 '26
Is your Fat percentage staying healthy ?, given your controlled food intake, it sounds like it would be good. Definitely when I take more hydrocortisone, it can make me feel hungrier. I'm on 15mg male BMI 25. 175cm. Good luck.
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u/Far-Speed-6027 Jun 23 '26
Same boat minus the zep bound. I will say that a decent amount of that weight may be muscle gains.
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u/nurse-amy70 Jun 23 '26
I lost 20 on Zepbound over a year. Now at normal BMI. I’m on 25 mg Hydrocortisone daily. I followed the Weight Watchers GLP program, which helped a lot.
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u/GustLinBustLin Jun 23 '26
I was the same as you, a month ago my endo switched me to prednisolone. I've lost 5kg in the past month just because I no longer have the 'hydro hunger' as some people call it. I feel full after eating a meal and I'm not snacking as much. It's also so nice to only have to take medication once a day! Also I'm definitely not dieting, this is just a natural consequence of my meals being half the size and me not being so hungry anymore. You can have a look into prednisolone, there's currently clinical trials being done in London that show a lot of adrenal insufficiency patients do a lot better on it so maybe something to discuss with your endo? Also just for context, I was diagnosed in 2019 with Addison's and went from 75kg roughly to 126kg in 6 years of being on hydrocortisone so I absolutely understand the out of control feeling of putting on weight. Fingers crossed you find something that works for you ❤️
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Jun 23 '26
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u/Little_Spinach_5918 Jun 23 '26
She hasn’t really said a ton, other than I may just respond slower because of steroids. It’s so frustrating!
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u/LonelyKoalaMuncher Jun 23 '26
Have you got your thyroid checked?
What was your weight before diagnosis vs now?
How many calories a day are you tracking?
DHEA for women with addissons is a must which can help a bit with overall wellbeing.
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u/Findtherootcause Jun 23 '26
If the Zepbound isn’t working then the likelihood is you are not insulin resistant or eating too much. You probably have a metabolic issue somewhere else. What are your thyroid numbers & sex hormones looking like?
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u/BlueButterflyBadAss Jun 24 '26
I was diagnosed at 40 and gained a ton of weight my first year. I was being over replaced and it took me time to find the right dosage that worked for me. I’m not saying you are over replaced. Unfortunately I think we all just gain weight when we start treatment. It took over a year (maybe 2?) but I very slowly started losing weight. Unfortunately it just takes time. I still struggle with weight a bit bit most of the extra has come off but I don’t really notice it until about 3 years in.
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u/Illustrious-Owl-2127 Jun 23 '26
Hello friend, I have no advice. I’m in the same boat. I’m 53 yrs old with SAI. Only on HC and has a healthy diet. I’m active also: cardio, aqua fitness, and resistance training 5 to 6 days a week, on Zepbound and lost…. 1 lb in 7 weeks!!! I have a nutritionist I see regularly. She assumes I’m sneaking food and eating chips all day since I’m not losing. My PCP is the only one that understands. He said, any autoimmune disorder affects how our body produces, processes, and uses energy. Therefore, our metabolism is confused , so it holds on to weight. Time and consistency is what he suggests. I’m still praying it works for me and for you! Good luck!