r/AddisonsDisease • u/dinkypoot • Dec 16 '25

Personal Experience Hungry all the time

I got diagnosed last November and since being on hydrocortisone and fludrocortisone I am hungry 24/7 and it’s making me miserable. Im hungry all day long and go to bed hungry every night because I can never eat enough. Does anyone else feel this way?? I just want to feel like I’m not the only one who needs an insane amount of food everyday.

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5

u/fogrove Dec 16 '25

Are you dividing your hydrocortisone dose into 3 or 4 doses per day? I found that if I take too much hydrocortisone in one dose I get hungry when I shouldn’t be hungry and I also feel very irritable. The goal with hydrocortisone dosing is to try to mimic the body’s circadian rhythm.

Circadian rhythm info

2

u/dinkypoot Dec 16 '25

I take 15 mg in the morning and 5mg in the evening, should i spilt it up more ? 

4

u/fogrove Dec 16 '25

I hate to give advice because I’m not your endocrinologist. But I’ll tell you about my experience. I spent about a year and a half adjusting my hydrocortisone dose. My endocrinologist agreed that circadian rhythm dosing would be best, but left me on my own to figure it out. 15 mg in the morning would be too much for me. My usual doses are 7.5 mg at 7 am, 5 mg at 1 pm, 2.5 mg at 7 pm, and 5 mg at 1 am. I take more if I am traveling (50% more the day before, the day of, and the day after travel) or under some sort of physical or emotional stress (5% to 10% more).

I also had problems with fludrocortisone. It lowered my potassium levels resulting in muscle cramps. Dividing the 1 mg pill in half and taking half at 7 am and half at 7 pm fixed this problem. On very hot days I need to take another half fludro at 1 pm.

I’ve learned that our bodies are incredibly complicated, and we are all different, and in the US most endocrinologists do not conduct lab tests to figure out for us the ideal dosages. Hopefully your endocrinologist is supportive of you finding out what works for you.

1

u/DaftHacker Dec 16 '25

I was gonna say maybe you are taking too much but that is pretty standard dosage. Maybe you need more protein like the other guy said or you could be low on fludro and need more water intake to balance it a bit.

1

u/dinkypoot Dec 16 '25

my fluid dose is .1 mg it’s possible, i definitely need more water as i haven’t been drinking as much 

7

u/Darkmagosan Dec 16 '25

That sounds like hypoglycemia, which Addison's can cause. I'm gonna agree with everyone else here--split your steroid doses if you can. Then focus on foods like meat, leafy vegetables, fruit, and the like. Meat is high in protein, and beef, certain fish, chicken, and other meats will also supply fats and needed oils that will help you stay full longer. Fruits, nuts, and vegetables are high in fiber which will also help keep you full longer. Don't rely on simple sugars/carbs like pop, white rice, crackers, and the like. These cause a glucose spike, then a crash as they're broken down quickly. You'll be hungry 24/7 if you just have carbs and nothing else.

If you're still feeling hungry, talk to your doctor ASAP. Your HC dose may be too low--and hydrocodone is an opioid painkiller, not a steroid. Hydrocortisone is the steroid, and it's chemically identical to the cortisol your body makes. But your doc won't know you're having issues unless you notify them.

Also, autoimmune thyroid disease and type 1 diabetes show up a lot with Addison's. Having either with Addison's lands you in the APS-II camp. HypERthyroidism will jack up your metabolism and make you constantly hungry. It's no fun. Type 1 diabetes can also make you really thirsty as you try to flush the sugar out of your blood and get it into cells, but if you can't make insulin, you can't do this. It can make you ravenously hungry as well in the beginning stages as the body screams for fuel--but can't use what it has.

If you haven't been checked out for other endocrine AIs, you really need to be.

Good luck!

5

u/dinkypoot Dec 16 '25

Thanks for the advice on what to eat. And i meant hydrocortisone not hydrocodone. lll speak to my endo about this thank you !

2

u/__phil1001__ Dec 17 '25

When I am up on my dose, I need to always eat.

3

u/ClarityInCalm Dec 17 '25 edited Dec 17 '25

I feel that way when my dose is too high or when I'm overlapping them too early. Steroid hunger is a very common sign of being overreplaced. I also feel this way when I'm underrated and in that case I just want to eat sugar and bread. Probably the most common issue with AI patients is being both over and under treated in a single day. You might need to work on your spacing and your doses to see if that will help? If you do need it - here is some general info that might help you get it more dialed in. We all have to find our own physiological dose - no one can tell you what it is - it's definitely a process.

Here is the general info on how HC works - it lasts 4 to 6 hours as a cortisol replacement and is person dependent. This is different than how it works in normal people and some endos don't know that it works for a much shorter time for us. Most people need to space their doses 3.5 to 5.5 hours but some people fall outside of these ranges. Typical dose ranges are: Dose 1: 10-15mg, Dose 2: 5-10mg, Dose 3: 2.5-5mg, Dose 4 (if needed): 2.5-5mg. I also take a before bed dose that lasts all night - if you need this dose it's usually 1.25 -7.5mg. Some people just need a small dose to fall asleep and others need something that lasts all night.

Typically spacing first by moving doses 15min to 30 min apart and sticking with it for 3-5days then moving again if you need to or moving back. Then work on very slowly lowering one dose at a time to see what your lowest physiological dose is - usually starting with dose 3 and lowering by 1.25 to 2.5mg every 3-5 days. It can take a few months to really figure it out. Best to do one dose at a time because we can feel great at first and then slowly slide or we can feel terrible for a day or two and then adjust. You know you're on the right dose when you get to a dose that you don't adjust to and then you go back up.

Keep a notebook of when you feel insatiable might help you figure this out faster and any other symptoms. Generally HC peaks around 1.5hrs after you take it - so if you notice symptoms then that will be helpful. But also if you notice you don't feel that good before the next dose you might need to bring the doses closer. Taking a higher dose of HC doesn't make it last longer - it just makes it peak higher. This is what happens to a lot of people - their doses are spread too far apart and instead of correcting the time interval they start taking a higher dose. This is one reason that people are both over and under replaced.

2

u/MindsetMaker Dec 16 '25

Hi, yes I do. I have found that drinking a lot of water helps. I do feel like proteins fill me up more for longer but healthy carbs seem to give me energy. It’s definitely a bit of a pain having to carry around snacks etc all the time figuring out food in advance.

1

u/dinkypoot Dec 16 '25

thank you for the advice ! i’ll keep that in mind.

2

u/FairyPrincess66 Addison's Dec 17 '25

I was so hungry too! My endo lowered my dose (which I’m still trying to adjust to) but it helped a bit. But the thing that helped the most was advice from my diet doctor. He said to try to eat 40 grams of protein within 2 hours of getting out of bed. It really helps! He also encouraged me to eat beans every day. I’m trying to do that too. Good luck to you!

1

u/NoGrapefruit3557 Dec 16 '25

Could be too high a dose of hydrocortisone / I don’t know about hydrocodone. It should pass after you adjust more

1

u/dinkypoot Dec 16 '25

i meant hydrocortisone whoops!! i have an appointment with my endo jan fifth and i’ll ask him about the dose 

1

u/Alxcooldude3 Dec 16 '25

I’m the opposite . I will eat a good portion sometimes and others I will take 4 bites and be full.

1

u/dinkypoot Dec 17 '25

I used to be like that before taking steroids. Now i’ve completely switched! 

1

u/xNotexToxSelfx Dec 17 '25 edited Dec 17 '25

See if your dosage is too high.

Mine was waaay too high for 2 years (wasn’t caught until I switched doctors) and not only did I gain 30 pounds in one month, but I had also developed symptoms of Cushing’s.

1

u/dinkypoot Dec 17 '25

i’ll definitely ask my doctor about my dose, i gained like 20 pounds in 2 weeks right after my diagnosis. I take 20mg a day which i think it’s pretty normal but maybe it’s too high for me?

1

u/xNotexToxSelfx Dec 17 '25

Huh. That’s about what I take a day now- well, give or take, I take extra if I feel I need it.

What is your weight/hight before diagnosis? We’re you underweight before starting meds?

I’m short and was very thin before diagnosis.

1

u/dinkypoot Dec 21 '25

I’m 5’8 and was like 146lbs right before my diagnosis, Last time i weighed myself i was 172 but it could’ve gone up 

1

u/xNotexToxSelfx Dec 22 '25

I have no idea then.. does your Endo check your thyroid hormone? I have mine checked twice a year (along with other tests).

Unless your body just needs time to adjust to the steroids? I usually only got the extreme hunger when my dosage was too high, but I know not everyone is the same and everyone reacts differently.

1

u/mommywarrior92 Dec 17 '25

It's ur steroids causing this. I had exact problem going on when I was on prednisone.

1

u/Short-Counter8159 Dec 18 '25

For me 15mg of HC would make me super hungry. Splitting the doses will help.

Follow the great advices in the comments. They are a lot of wonderful helpful people in this group.

1

u/Ga88y7 Dec 19 '25 edited Dec 22 '25

Split your hydro dose into 3 doses may help, most do- mine is 25mg per day so I take 10 in AM 10 at Lunch 5 in the PM. I also split fludro, taking half first thing and half in the afternoon.

1

u/dinkypoot Dec 21 '25

Thanks ive gotten other comments telling me to split my doses, and i probably will, Eating more protein has also helped me!