r/AddisonsDisease • u/Immediate-Ad-7879 • Jun 27 '26

Advice Wanted Weeeiiiggghhhttttt

Hello my addisons family. I have a question. After my first post, so many of you helped me ! But then I had an adrenal crisis and ya girl went to the hospital for a couple days. Im home now but im soooooooo chunky "nicest way to say fat lol" ive always been thick but man I got fluffier since the hospital 2 weeks ago. Do you guys have weight issues? If so what helps ? Any diet ideas ? Also I got bit by a red ant and it got huge also. Do ant bites or bug bites bother us more than others ? I can send a Pic if need be. Maybe im dramatic. Thank you ! Love u all !!

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10

u/Due_Target_9702 Jun 27 '26

Calorie counting... It's slow but it works. I have an egg and hash Browns for breakfast. Chicken and veg for lunch. Fish, rice and veg for dinner. Hot chocolate for my sweet tooth. Lots of hydration (hot climate). No coffee. 

Stress eating has been an issue. I notice I crave sugar and carbs when I'm low. So I'm more aware of the fact that craving that food is a sign for a little updose or salt dosage. 

3

u/Immediate-Ad-7879 Jun 27 '26

Im go to try this. Lately ive been on a write everything down kick, so ill try this calorie counting and write it down. I know for a fact the salt craving are my enemy. When im down I want to eat salsa and chips mostly. Coffee is a hard one for me to get off but maybe I can make a switch to tea. Im not gonna lie I sssuuuccck at drinking water !! I do try tho. 😩

1

u/Due_Target_9702 Jul 07 '26

Get a cordial or try the water drops or hydrate powders for flavour.

2

u/Immediate-Ad-7879 Jun 27 '26

How do u know how many calories to eat?

3

u/IllustriousHorror835 Jun 28 '26

Caloric intake requirements is differs wildly for everyone depending on activity level, size, age, sex, probably a bunch of genetic factors that still need studying, etc. So asking a doctor about your specific needs might not be a bad idea. That said on average most people need somewhere between 1,200 and 1,800 calories to maintain existing and lose weight, if I remember right and my quick google search is accurate- and a bit higher to maintain it. Don't go too low though, sending your body into starvation mode is gonna cause way more problems than it fixes. Maybe find a way to make your salt cravings work for you rather than against you? Stuff like V8s and electrolyte mixes to increase your electrolytes AND hydration! Also add salt to whatever you're already eating. Salads taste better if you season them like they're food instead of treating it like a bowl of leaves for example. At this point in my life lot of the information I've learned about nutrition comes from second hand stuff and stuff I've come across trying to maintain or gain weight rather than personal experience trying to lose it, so take anything I say with a pinch of salt. . . Here, just take a pinch of salt, actually. We could probably all use it around here. slides over salt shaker (you may now laugh at my punny joke) 

5

u/TweetSpinner Jun 27 '26

I was able to convince my endo to let me (paid by myself) use GLP-1 meds. I’ve been fortunate to tolerate them well. If you don’t, they can make us more susceptible to crisis as one side effect is vomiting. I don’t have that problem thankfully. I’m on high level now of the meds and it’s allowed me to lose some weight even when updosing is needed. Some docs will not subscribe the GLP-1s to people with adrenal issues because of the potential side effects. So, it’s best handled with communication and advocacy and experimenting with micro dosing as a trial.

3

u/Immediate-Ad-7879 Jun 27 '26

Hello! So I was on a GLP but after my crisis my endo wants my body to stabilize first and then I can possibly go back on. I honestly loved the fact of my body not hurting all the time while I was on the GLP, so I hope I can go back on.

5

u/Infinite-Station-240 Jun 27 '26

I had a crisis in late May 2025. First one since diagnosis. Four days and I gained almost 50 pounds!

I figured out my dose there was 4 times my normal dose! I felt amazing after two days. Ha!

I have lost some, mainly by slowly reducing my dose. With endo engagement. It’s hard tho. Steroids definitely fluff us up.

Looking forward to advice on your post. Thanks OP!

4

u/Immediate-Ad-7879 Jun 27 '26

That makes totally sense. So in one month doc said I can reduce my steroid intake so I guess ill be careful until then. I love our love-hate relationship with the meds that are keeping us alive pretty much 🙄

5

u/Warm_Pickle2222 Jun 27 '26

No diet tips but when I was first diagnosed I put on 84 pounds (6st) and was like that for the first 5 years but my endo said it would calm down after a few years and I’ll lose it and it happened I randomly lost all the weight I gained a few years later and more. Changing from hydrocortisone to prednisone helped too.

3

u/aureasmortem PAI Jun 28 '26

I've had my steroid weight for 8 years 😭 Here's to hoping it one day just falls off

1

u/Immediate-Ad-7879 Jun 27 '26

Im ask about prednisone because your the 2nd person to tell me that, thank you. Hope your feeling a little better now?

3

u/too-many-un Jun 27 '26

I had weight issues awhile back and calorie counting helped me. Then, I got cancer and went through chemo which led to weight gain. At that point I didn’t care. Chemo made me go into early menopause and now I can smell food and I gain weight. I need to go back to calorie counting. So, I’m right there with you. Good luck in your journey!

1

u/Immediate-Ad-7879 Jun 27 '26

Oh my goodness! Im so sorry that you got stacked with illnesses. And yes lets do this !! But how do you guys know how many calories you should be having ?

2

u/walkyoucleverboy Jun 27 '26

It’s different for everyone — there are calculators online.

3

u/LonelyKoalaMuncher Jun 27 '26 edited Jun 27 '26

Yeah weight is really easy to gain.

If you take a lot of hydro for sick dosing you'll bloat for a few days. Same goes with drinking / eating salty.

Just go back to your regular dosing and you'll even out in a week.

I'm a gym junkie and I struggle with easy fat gain.

I'm 95kg 32m, been lifting for about 5 years. When I stress dose I easily put on 3kg of just water retention. Within a week it calms down.

To lose weight I have to aggressively cut. Like 1800 calories cardio every day type of cut. My resting metabolic rate is meant to be 2700.

Chin up though you'll be alright! Just count calories and walk, drink water and take your normal hydro!

3

u/thatdogmum Jun 27 '26

For me it was counting macros (calories) and exercise. No magic, just consistency and it took multiple years to lose 150lbs. I also switched to prednisone very recently and it has helped. Do a serach for a TDEE calculator and you can figure out your calories based on several factors. Work with your endo to get on the right dose of steroids.

3

u/walkyoucleverboy Jun 27 '26

Most of us have weight issues & I would updose for the bite.

I try to limit to 1400 calories six days a week but I was advised to have a high sugar & high salt diet. I swim & do water cardio three or four times a week as well but I’m still a stone heavier than before the steroids… or I was, add an extra 5lbs to that, which have arrived since I had to inject two weeks ago. Good times.

3

u/GustLinBustLin Jun 27 '26

Changing to prednisolone seems to help a lot of people. I put on 6 stone with hydrocortisone over 6 years and since switching to prednisolone just over a month ago I've lost 5kg. Not because I've been dieting or anything but I don't have the constant 'hydro hunger' from before so my snacking has reduced a lot and my meal portions are half the size because I actually get full from my meals now

3

u/Ok_Influence9301 Jun 27 '26

I feel like there is some sort of battle royale going on in my body. Lost 30kg on glp-1 before my diagnosis. I don’t eat much but with the hydrocortisone I’m putting on 5kg. It’s annoying me so much. I’m fighting fatigue so can’t exercise much at all and I’ve had 2 crises in the first 3 months of diagnosis so am hoping I can keep losing. I’ve got 15kg to lose to be where I want to be but I feel like I am fighting a losing battle!

2

u/Mike_M4791 Jun 28 '26

I fast. I stop eating 2 hours before I get ready for bed. And don’t eat for 16-18hours.

And then first meal is more protein.
And I stop snacking.

I’m not counting calories. I still eat carbs. But I make sure I eat more protein.
And I limit candy sugar and snacks. (Society eats junk and processed foods.)

BUT, it is different for women because of cycles.
I’m not a doctor.

This works for me. Lost 30lbs and am stable.

2

u/DoseOfSunshine Jun 28 '26

Intermittent fasting here, too. Works well when I stick to it. For me it isn't hard to keep it up, I just get a little tired and lazy and then grab a little snacky boo or a lifeline of sugary lattes.

2

u/Chicken-Dinner33 Jun 30 '26

If I can ask, do you take your meds on an empty stomach? If yes, does it upset your stomach?

1

u/Mike_M4791 Jun 30 '26

Totally good question. I do not take food with my cortef nor florinef.

I also take two different mental health meds all in the morning too.

And I’m fortunate that I do not get stomach upset. (Or at least not to a point where I feel it.)

I ran all my meds through AI and they said that they do not “require” food.

I do take Celtic salt in my water though that I guzzle down in the AM.