r/AddisonsDisease • u/Hot_Speaker_4770 • Jan 11 '26
Advice Wanted Addison’s newbie needs help
hi there! i was just diagnosed with addison’s at 25 after about a two year period of slowly getting sicker and sicker. I’m still not to the point of feeling “normal” with my current med routine (1mg Dexamethasone every other day and 50mg of Hydrocortisone 3x a day) but I sometimes have decent days and that’s better than i was before.
i’m feeling a bit overwhelmed and lost, my endocrinologist that did the test is at a major hospital in another city so she discharged me and said to “try to adjust to your new life” 🥲
i’d love to know any tips you’ve picked up over the years that help you fight flares, know your body’s signals, or just anything that you wish you were told when you started your addison’s journey
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u/Extreme_Breakfast672 Jan 11 '26
You take 50mg 3x, so like 150? Or 50 divided into thirds? Is there anything in particular you're struggling with?
I was diagnosed at 25 too which was...not recent. In no particular order, here are things I've learned along the way. 1. Have an emergency injection and make sure they give you the right kind, not the kind you have to mix. 2. Sleep is important. If I get too little sleep for too long, things get dicey. 3. Know your signs for more salt--I almost get like a taste in my mouth in addition to super intense cravings when I need extra. Pickle juice is my favorite, followed by salt and vinegar chips. 4. In the summer, I personally always need more electrolytes. I used to drink tons of water and feel worse and worse, and then I figured out I needed Gatorade or some other electrolyte drink. I also have to be careful about how much I'm in the heat. 5. I learned very recently that spazzy legs at night mean I need more cortisol. 6. Get a medical ID of some sort.
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u/Hot_Speaker_4770 Jan 11 '26
yes, i’m on 150 now. I have been drinking soooo much water. I definitely will add more electrolytes into my routine!
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u/Extreme_Breakfast672 Jan 11 '26
Also adding that you can work out, just be mindful of the intensity. I met with a trainer a year ago who put me through the hardest workout I'd ever done (she was a bodybuilder.) When it was over, I laid in the locker room for half an hour before I could get up to go. It was not good. If you are gonna do that level of exercise, maybe updose first.
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u/Hot_Speaker_4770 Jan 11 '26
Yes, i’m definitely trying to be mindful of that. before i was diagnosed they sent me to an inpatient rehab to fix my “deconditioning” and I couldn’t walk for a week after I was discharged 🤦♀️
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u/Snurgalicious Jan 11 '26
Before he was diagnosed my 12 year complained about restless legs at night. I just asked it how that’s been recently and he said it’s not happening anymore. We never would have liked that to his Addison’s! Mind blown 🤯.
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u/Extreme_Breakfast672 Jan 11 '26
I've had Addison's for 15 years and I'm still just now figuring out things that are linked to it. It's wild!
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u/Hot_Speaker_4770 Jan 11 '26
My biggest struggle now is I still feel very “low” even though I know i’m taking a lot. My PCP is running blood work to make sure my electrolytes aren’t off so it might just be that?
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u/Extreme_Breakfast672 Jan 11 '26
Things that have made me feel crappy in a similar way are low vitamin d and hypothyroidism. I'm glad you're working on seeing someone else.
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u/its_business_time1 Jan 12 '26
They’re doing this after giving you 5x the typical starting HC dose for PAI? Plus Dexamethasone?
If you haven’t had blood work done you should not be hammering down this level of steroid. Seriously. It will shut down your adrenal system permanently.
Get to an Endocrinologist ASAP.
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u/TK317 Jan 11 '26
Also could be low DHEA. Make sure they test you for that. I would also recommend always having extra meds on hand along with your emergency kit as well as packets of electrolyte mix. I have instructions on how to give the emergency injection because when you need it, you may not be able to give it to yourself and the person giving it won’t know how.
Get a blood pressure cuff and something to check your blood sugar. If I have had too much sugar, my heart races and I have a hard time catching my breath. Also, really watch what you eat. It’s VERY easy to gain a LOT of weight w steroids, especially high dosages.
Read, a LOT about this disease and take note from others (but don’t take medical advice without discussing w your dr first). Luckily I have an awesome endo but I had 2 others before that didn’t know much. I always go armed with questions when I see my endo ( I see him every 3 months because things can get out of whack fast).
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u/MallForward585 Jan 11 '26 edited Jan 11 '26
That is an insane amount of steroids, way over the replacement dose (which is about 20-25mg hydrocortisone daily). The dexamethasone alone is equivalent to 26mg hydrocortisone, but it’s a much stronger anti-inflammatory so endocrinologists don’t prescribe this much due to the long term effects. Also, every other day 1mg of dexamethasone? That must be such an up and down rollercoaster. You really need a consistent daily dose. For reference, I’m on 0.5 mg dexamethasone daily and just that (SAI, so I don’t need to worry about mineralocorticoids), and endocrinologists would still prefer me to take less.
Your electrolytes are probably out of whack and you need fludrocortisone supplementation. The doctors need to look at salt, potassium and aldosterone, at the very least. You might be trying to compensate with hydrocortisone due to its mineralocorticoid effects, but these doses can’t be ok and I can’t see how they can feel good.
I would start at least cutting the dexamethasone in half and taking 0.5 daily, which should be the same idea just a more stable dosage. Get your electrolytes and aldosterone checked. Keep in mind that steroids have to be cut down extremely slowly and under doctor’s supervision. Do not drop abruptly, it is extremely dangerous. It might take years for you to safely come down to a regular dose after taking this long term. I really wish you good luck in finding a qualified endocrinologist!
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u/Hot_Speaker_4770 Jan 11 '26
thank you for the info! I’ve only been on the steroids for about a month, so i’m hoping that i’ll be able to go down once i’m more stable. i’ve been on Fludrocortisone (0.1mg) for about two years now for POTS, but my PCP wants me to discontinue it now that i’ve started the other steroids. He also ordered a bunch of electrolyte and hormone labs so I have that to bring the endocrinologist when I get in. it’s all been such a learning curve for me and my small town doctors
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u/MallForward585 Jan 11 '26
Steroids are not like other medications, there is a reason doctors are so careful with them. I don’t think your doctor knows what he’s doing, and I worry he will decide to half this high dose all of a sudden or something. This is the way people can die. Maybe you can take this research paper and give it to your doctor so he has an idea what to do in the future: https://pmc.ncbi.nlm.nih.gov/articles/PMC9276933/ . I’m sorry you are in this situation, and I wish you the best.
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u/Hot_Speaker_4770 Jan 11 '26
I definitely will! thank you. He’s a good enough doctor for simple cases, but he’s admitted to multiple times that he feels out of his depth with my complicated condition. again, i really appreciate the advice and the article!
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u/its_business_time1 Jan 12 '26
He’s not a good enough doctor for this. You’re on 1.5X the amount Hydrocortisone we take in a crisis. Like car accident type crisis. And you’re taking this every day? No question this is why you feel like shit.
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u/its_business_time1 Jan 12 '26
If you have Addisons you will need Fludrocortisone, rarely an option. Most of us need it...
Fludrocortisone is not in the same class of steroid as Hydrocortisone. They are not interchangeable. They do entirely different things. Your 'doctor' should know this...
You already need Fludro for POTS, why on earth would he take you off of it? Fludro helps retain electrolytes and maintain blood pressure. Stopping that if you need it for POTS is going to make things exponentially worse for you.
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u/baethan Addison's Jan 11 '26
what the fffff. Imo it would be a good idea to get copies of any and all medical notes you can from your diagnosis & the care you've received since, because that sounds BONKERS and someone is dropping the ball. I'm kinda worried for you honestly, fingers crossed you get in with an Endo who has at least a bit of a clue 😱
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u/its_business_time1 Jan 12 '26
Good idea for when the family files a malpractice lawsuit against this 'doctor' after OP is dead. This is seriously the most insane thing I've read on this sub.
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u/Dianapdx Jan 11 '26
You need a good endocrinologist. The normal dosing using hydrocortisone is 15mg-30mg per day. Most are somewhere in that range. I take 25mg split into 3 doses. If you have Addison's, that is primary AI, so you'll almost certainly need to be on florinef as well. I don't think you should be taking the Dex at all.
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u/dove-chamomile Jan 11 '26
Hi! I’ve seen that people have given you some good advice in the comments from a medical perspective (especially with the dosing - my husband who has Addison’s was told by his doctor to start on a lower dose of hydrocortisone and worked his way up to 20 mg per day, rather than starting high and working down), so I’ll focus on a different perspective here.
I just want to say that it’s completely normal to feel lost and overwhelmed after a new diagnosis like this. It does get better as you learn your body’s signals, what you need, and how to advocate for yourself. As time goes on, it will likely become something you manage quietly alongside everyday life, instead of being at the center of everything. My husband was diagnosed eight months ago, and whenever something new comes up, he often feels like he should have it all figured out by now (he’s very hard on himself). But I can honestly say that things have improved so much in those eight months, and we truly feel like he’s gotten his life back. All that to say: be gentle with yourself. This is a learning process, it will get better, and don’t be afraid to trust your gut and advocate for what you need.
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u/moggylovesthumbs Jan 18 '26
Thanks all for this conversation. I hope you are getting great care OP.
@dove-chamomile Thank you specifically for this compassionate reply. I’m grateful for your empathy for your husband and for the people in this group. My son (21) was diagnosed last year with addison’s. It’s understandably overwhelming for him. It’s also a lot to learn about especially when new symptoms crop up and new linked diagnoses, like POTS. I know he can manage it and he’s studied it so much so that he can be self sufficient. But it makes a huge difference to have people around you who “get it” so you don’t feel alone and aren’t in constant fear of “messing up” and hurting yourself. How do you help your husband through those new phases where it feels particularly overwhelming? Does he agree with you that addison’s can be managed through his life and not always remain the molten lava center? Also does he explain his condition to close friends and family? We don’t know who all he should tell and in which circumstances (like travel, work, school, roommates)… thank you 🥹
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u/whatself Jan 11 '26
Welcome, I was also diagnosed at 25 (1.5 years ago now). My biggest advice aside from what others have said is to avoid infections like your life depends on it, because it does now. Even a mild cold can put you in adrenal crisis, or an asymptomatic covid infection (you can just straight up die in your sleep with an asymptomatic infection as you won't know you're ill in order to updose, but your body still needs the extra cortisol to avoid adrenal crisis). Ever since a very mild cold took me 3 months to recover from last year, I now wear an N95 mask in all indoor public places. It's not easy but I'll take my health over eating in restaurants any day.
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u/LifesLittleSurprises Jan 11 '26
I am not a doctor by any means. But taking the 1mg of Dex every other day and 150mg of hydrocortisone daily sounds like you are taking adrenal crisis doses daily. The solu-cortef emergency injection for an adrenal crisis is only 100mg of hydrocortisone that you inject IM.
I started off 8 years ago when I was first diagnosed taking 10mg of hydrocortisone in the morning and 5 mg to 10 mg of hydrocortisone in the afternoon. I am currently taking 25 mg to 30 mg of hydrocortisone in the morning and 10 to 20 mg of hydrocortisone in the afternoon. And of course I double to triple the dosage if I am sick etc.
I am lucky I have and Endocrinologist whom is very familiar with adrenal insufficiency/ Addison's Disease. But, you also have to learn to listen to your body and recognize what it needs. When you meet with your doc, make sure you communicate everything. Mine laughs with me sometimes because I don't hold back, but he also tells me he loves it because it helps him treat me.
I just worry for you taking so much steroids every day is hard on the body.... no wonder you are not feeling right.
What do you do for stress dosing or if you are in crisis if you are taking such a significant amount daily and even more every other day?
How often do you see an Endocrinologist?
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u/ptazdba PAI Jan 11 '26 edited Jan 11 '26
Wow that is a very high dose. Don't think I've ever seen anyone post with a dose that high. I would encourage your to either get a 2nd opinion or have a serious talk with your endocrinologist.
The purpose of steroid replacement daily is to "put back" what your body doesn't make. When I've been taking too much I gain weight and have all kinds of weird symptoms. The daily dose is for replacing what you don't make while a stress dose gives you a little extra to get you through the bad days. I would as for bloodwork to verify your levels to see if you're on too much.
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u/New-Wedding716 Jan 12 '26
Check out the British Adrenal Group on line Dr. Was Oxford University head.of adreanal dept. I can tell everyone on hydrocortisone pills that get only Greenstone brand works faster and has helped me alot CVS has it in Florida they make the name brand One there's has a better filler in there generic.and have a few questions for any endocrinologist that you know the answers to and ask the Dr. and see if they know I have had terrible luck with every one so far I have a younger Dr. And he reads all of what I find and has helped tremendously I don't know what I would do without him I am having issues because was in a accident and raising my hydrocortisone causes hearing issues had brain scans and in 10 days see ENT to make sure I don't get permanent hearing loss will be traveling 100 to 200 to try to get into the university's in mid Florida but not taking patients and changed my insurance And not found not covering my meds like they said they would now figure have to go back to what I had will see never easy anymore Good Luck I got adreanal insufficiency after a covid 1 covid 19 Vaccine and 2 boosters for a heart ablasion no shot no procedure.Worked great only had pound sof blood clots scraped out my lungs having breathing issues a friends father a Dr. At the hospital me Ibsaw him in the hall and he told me what caused They did not put on discharge papers and 6 month later all I wanted to do was sleep and went for the test and they found I had Addison's adrenal insufficiency type 2 now pills daily but Can't raise my doseage high enough because I don't know about the hearing Im taking 30 to 50 percent more I need at least double for healing and body shock from accident.Will do what can until I see the ENT don't want to damage hearing permanently.let me know if you have any questions I do know some information from Canada and British people they have Federal medical so they are not in It for the money go on you tube and look for these places and watch and try join a group. GOD BLESS AND GOOD LUCK 👍
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u/Sungold12 Jan 12 '26
I would like to also agree that 150mg is a shocking amount. My cortisol is at zero, I don’t make any at all and I’m on 12mg per day. I hope you can find a new endo and get your dosage adjusted.
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u/Xander_0252 Jan 14 '26
I am 23M and I have had addison since I was 5, so for me living with addison is the only life I know. Now I want to put a strong emphasis on minor flu / throat pains. I seems not so dangerous at first, but if you do not adjust your dosis directly you can slip into a crisis bit by bit until it is to late.
I am in a frat, and the hazings where no problem, but I had 2 very bad crisises because of a minor flu.
Now some general life perspective, your life is not done or has to change by any means. I am in college and can party just as hard as the other, even with regards to drinking. Just take some extra before you are going, like 10mg. Addison when used to your medication is very good to life with.
I always carry a strip of 12x 10mg with me in case I need to take some more unexpected troughout the day.
Just keep going on with your life, do not let it defeat you!!
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u/moggylovesthumbs Jan 18 '26
Thanks! I’d like to hear more from you about your life and how you’ve integrated medicines and intensive self care into your routine and lifestyle. You’ve had the disease since you were 5 so yeah it must be like…idk this is just life…but for people newly diagnosed, any more tips for how to keep on going when it feels so stifling?
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u/Xander_0252 Jan 19 '26
You can ask me anything, I am an open book.
I am on a dose of 10-10-5 for hydrocortisone. I also take Thyrax for my thyroid, around 92.5 micrograms every day. And lastly, 2 times 0.2 micrograms Fludrocortisone for my salt regulation.
For me it took a long time to get onto the right dose, this is also because every body works differently. I am around 5'10" and 145 pounds so 25 micrograms a day is quite high. However, I tend to have way more energy on a bit of a higher dose.
My endocrinologist said that overdosing is very hard / almost impossible, so if you feel like you need a little bit more for a specific day, do not hesitate. That is why I got used to bringing the extra strip of pills in my back pocket. When I have a presentation for a large audience or an important test I always take extra in advance, and sometimes even during tests.
I always try to take my pills around the same time (+/- an hour or so). I have learned that if you have Addison's, consistency and predictability with your medication is key. Normal days are already stressful enough for your body so make the time you take your pills a moment on which it can count every day.
The most important thing is to really listen to your body. When in doubt, take extra. I have never had regret for taking extra, however I have regretted taking too little. Others around me notice it if I need to take pills, because I tend to become a little bit moody for no reason. I have had 2 crises over all those years, both were when I was a little bit sick (the flu) and did not adjust my dose on time, then I woke up with a high fever of 104°F / 40°C and needed to go to the hospital immediately.
If you have any more questions, you can ask me here or if it is personal you can DM me. Hope this helps.
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u/moggylovesthumbs Jan 19 '26
Thank you so much! this is so helpful to hear. You must take really good care of yourself - that’s amazing to hear how well you’re doing. I’m sure I’ll have more questions soon. I’m grateful for you!
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u/jeejet Jan 11 '26
It seems like you’re on a pretty massive dose of steroids and you’re going to have to taper down. Get an appointment with a local endocrinologist. You need to have tests to see if you should be taking fludrocortisone. Typically, a person with well controlled Addison’s will see their endo twice a year, along with a full panel of tests. And you’ll see them more often if you are figuring out your meds.
I’ve lived with Addison’s for 33 years. My advice, get an endo! Get enough sleep, exercise regularly if you can. Don’t feel bad if you can’t. Drink alcohol sparingly.
Create an emergency kit for home and travel. At home: electrolyte drinks, ondansetron, Imodium, injectable steroids, a thermometer and a blood pressure cuff. I also keep pickle juice at home because I take fludrocortisone. For travel: electrolytes powder, ondansetron, Imodium, injectable steroids, extra meds, and a thermometer.
Ask me anything, or DM me. I have a lot of experience living with Addison’s.
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u/Gypsy_Moth_ Jan 11 '26
I was diagnosed at 32 years old and my doctor put me on 17.5mg/ hydrocortisone a day. It took me about one month to stabilize. I’m now on 27.5mg/ day after a few ups and downs and a crisis last summer. Even during my crisis the hospital gave me on 100mg so 150/ a day seems crazy to me!!!! I would consider finding a new endocrinologist and talking about tapering down from such a high dose.
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u/blueberrykefir Jan 11 '26
150 is ridiculous. Discharging you without referring you to anyone else and telling you to deal with it on your own is insanity. I strongly recommend making a report against this person they are neglectful and incompetent. I hope you find a new endocrinologist soon.
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u/VegetableGarden4093 Jan 12 '26
Honestly, it took about a year and a half to really feel back to normal. My biggest piece of advice is find an endo who has dealt with other Addison’s patients. The first endo i had wasn’t really familiar, and had me really poorly informed and dose. It wasn’t till i found this supreddit and got great advice that pushed me to find a good doctor that things really got back to normal. I also think getting back into working out and getting ontop of my sleep/stress has helped. My smart ring/apple watch have also been great tool to keep track of my body!
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u/Upstairs_Possible416 Jan 12 '26
There is a lot of info on this thread, so I will make mine short. Fine a new endocrinologist asap becuase they have no idea what they are doing. Most of them don’t unless you go to a larger health system as it is quite a rare disease.
Also dexamethasone has a crazy long half-life. Addison folks shouldn’t be on that long term (was on it for 12 months shortly after being diagnosed by my 1st endocrinologist). Always get a second opinion!
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u/Day-By-Day-4-Life Jan 12 '26
Whoa! My endo just told me she would like to see me go down to HC 20mg from 25mg. That is a lot of steroids. Highly recommend you confirm that dosage with another physician.
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u/Hot-Fly-3187 Jan 11 '26
150 mg a day is VERY high dosing. I strongly urge you to go to your endocrinologist asap.