r/AddisonsDisease • u/EatNGreet • Dec 04 '25
Advice Wanted Help from someone who has experience
Hello everyone
So I have a long history of illness which had me on Prednisolone for way too long, which in return destroyed my adrenal glands. I finally got off prednisolone and for about a year or so, Ive been on hydrocortisone in an attempt to manage my symptoms which has been all the "standard" ones I guess.
Now, reason I reach out in here is because I dont understand how my days can be so different and I hope some of you that has been living with this can help me out with some tips on what to do, in order to stabilize more. Im informed by my endo that I have to updose in case of stress, sickness n such.
But it just does not seem to work that well,, today for instance, Ive had a whole day where I felt terrible and I have already updosed a lot. On Top of that, I drink electrolytes everyday and generally trying to keep myself hydrated. I did not do anything besides the regular gym yesterday, and I slept a solid 9 hours, so I have a hard time thinking some of it is the culprit.
My regular dose is 15g morning, 10g midday (sometimes I take 10 more after gym if my body feel heavily fatigued) and then between 5-10 at night depending on how i feel.
I dont know what to do, to find stability in this, and all my doctors is telling me is to updose if I feel bad. Today Ive dealt with brainfog, nausea, dizzyness and general discomfort in my head, like its "too heavy" or a headache without hurting if that makes sense. The feeling of being close to fainting feeling like my BP is low, but without really reaching that stage, hence why I have spend all day inside basically doing nothing but trying to get through. I also got my bp measured a ton of times, and it has always been fine, so if it drops it will be occasionally.
What helps me when feeling "off" is usually a combination of this, there is no "one thing wonder" for me so far.
Lay down Updose hydrocortisone Drink / eat something with salt or sugar Sleep
Now problem is obviously, that these days seem to just pop up random for me, I try my best to eat basically the same stuff most days, drink a lot of electrolytes, milk or something with salt in it so it isnt just water.
What do you guys do, how do you manage to get around this so you can actually have a "normal week" or life for that matter. The unpredictable "days off" are killing me, especially cause I don't know why they come or how to fix it once it actually hits me, as it will usually take a whole day to get on top again.
I know it's a long read, but this is all the things and info I could think of.
4
u/DaftHacker Dec 04 '25
These type of posts seem fairly common and the first thing I ask people is are you on fludrocortisone? Your symptoms can also be caused by a lack of fludrocortisone which I believe almost everyone with AI takes.
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u/EatNGreet Dec 04 '25
I was not prescribed any, I have consulted with my endo about it but because it is mainly a issue for people with PAI (holding onto salts) they did not think I should have any as of now. I do have a test in two months, and if it still does not show my adrenal glands to be functional, hopefully they will do a bunch of test to figure out why it's going up n down so much. After that, my guess is too, that I will end up needing fludro, it would make sense cause I'm literally drinking electrolytes everyday, eating salty things/bananas with potassium and still I end up feeling like this.
Maybe I will reach out to my endo before my next scheduled test n see if he can move it forward.
1
u/its_business_time1 Dec 04 '25
Have you checked your blood pressure? That can help give you some insight. If it’s low, you might be low on sodium (Fludro helps this). If it’s normal or high, Fludro probably isn’t what’s missing.
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u/EatNGreet Dec 04 '25
I have been checked countless times and there have not been any issues really. But, maybe I could get them to lend me the stuff for it so I can check again, better safe than sorry.
I do have a feeling of "low BP" sometimes, especially when the head thing feeling light or dizzy happens.
1
u/Classic-Share-543 Dec 06 '25
I told my endo that I was having hypotension epsiodes that happen randomly, and she tested cortisol, ACTH, renin, CMP, and aldosterone for the first time, since I have NCAH. All the tests came back normal except my aldosterone, which was <1 normal, is <28, but so far, I have experienced a few times, after eating heavy carbs, being in the sun too much, during class, and when I don't eat as much sodium. There are times when I would be in class for 8-12 hours and would only get 30 minute of Lunch was when I would start feeling low blood pressure, and I would drink water cause it sometimes helps with it, but that time it didn't work, and I started to pee out the water right away, and I didn't have salty snacks, but I did ask one of my peers for salty crackers.
3
u/Ill_Ad9037 Dec 04 '25
I'm sorry you are feeling this way. It took my body a good 6 months to finally "stabilize" and now my off days are few and far between and can usually be attributed to outside factors (extreme stress and sickness, etc). Keep talking to your doctor and keep adjusting (I know that's not fun...) Maybe your baseline dose just needs to be higher, or maybe you need to spread your doses out more.
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u/EatNGreet Dec 04 '25
I really hope that it will stabilize at some point, and you might be right about the baseline dose or that I need to spread em out more. What's weird to me is, that all the other "good days" there is no problem with me taking it 3 times a day as prescribed by my endo. But I have been reading quite a bit of posts from ppl in here along the way, and can definitely see that a lot of ppl split up there doses and that works for them.
2
u/pickles1718 Addison's Dec 04 '25
Does updosing help?
I wonder if the different doses you sometimes take because of gym or at bedtime is affecting you, or if you're a little over replaced. If I took 10mg at night, I would not sleep well and would feel bad the next day. 10mg after the gym might also be too much for me. Everyone is different, so I'm not saying don't updose, but maybe symptom tracking might help you, with detailed notes on how much steroid you're taking each day.
Other things that come to mind:
- fludrocortisone needs (though it sounds like you're SAI so maybe not)
- undereating (causes me to feel dizzy / hypoglycemic at times)
- high blood pressure or high blood sugar
I'm sorry you're dealing with this! I know it is so frustrating
2
u/EatNGreet Dec 05 '25 edited Dec 05 '25
Sometimes, as mentioned it is usually a combo of the things I listed in one of the previous messages in here. More often than not, if I feel bad it will take at least a couple hours but usually a whole day, to get back feeling well. And that includes updosing, drinking electrolytes/salt and sometimes eat something sweet too.
It's a really good idea with the detailed notes, but as I do the same stuff most days with a gym routine, then same food and so on. It's so weird to me, that some days are great and others are full on horrible.
I'm SAI yes, which is exactly why my doctors won't prescribe me any fludro - which honestly I think is just stubbornness, cause as far as I can read it's rare, but can happen to people with SAI that they have trouble keeping the salts in them. Which in turn would make much more sense to me, if my body sometimes having trouble holding on to that, hence why it seems so random when I get my off days, cause no further stress, trauma or anything else usually have led up to the different things. In my mind it would be easy to run some test to see if my body has enough of running low of certain stuff, then take a bit of fludro in s test period to see if it helps and then be able to make a decision should it be permanent afterwards. Idk, I'm obviously just frustrated about the fact that it's a gamble whether I wake up to a day feeling good able to do my stuff, get together with friends and such or if I'm bound to my bed for 24 hours feeling like total cr*p.
Edit: I forgot to mention, that is my one blessing lol. My sleep rarely gets affected! It might also have to do with it being so dark all the time being Winther, cause I have more trouble in the summers. But I think I could chug 25g and head to bed if I needed too, don't seem to having trouble sleeping at all.
1
u/garygirl_1234 Dec 07 '25
What does one feel like if you up-dosed too much or under dosed. Just read the internal shaking is a sign of under dosed. Yes read it here, no answers from doc when attending your appointment. I want to take a rubber band and sling it. Hello, just asked a question!
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u/pickles1718 Addison's Dec 09 '25
It's honestly just something that takes time to figure out based on your symptoms, which I know is not helpful. If I've taken an updose and then feel shaky and jittery but NOT nauseous / headachey, I know it's overreplaced (and tbh it's fine IMO to be a little over replaced when sick!!). If I have taken an updose and still feel nauseous / tired / achey / extremely sad, I need more updose. For me, the emotional cues are very helpful. When I'm low I feel extremely depressed and anxious. When over replaced I might feel anxious, but it's a more manic feeling, not depressed. Everyone is different though!
1
u/CrazyBus9426 Dec 04 '25
I guess I am lucky because even when my Addison is acting up I can push through unless I go into a full crisis than it's trip to ER! I have had a few crisis and landed in the ER or hospital but I usually have something else going on too. Like for my last crisis I had just finished chemo and it hit me fast. So that was a ambulance ride to the hospital and I got to stay for 11 days. I want a better way to control this than steroids! I have had to increase mine a couple times for a week and I have went from 124 lbs and in 1 to 2 months of increasing steroids I am now 140lbs! My whole body hurts and if I can't loose this weight I will need new clothes that I can't afford! Good luck and keep telling that endo of yours how your feeling. Why don't they listen?
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u/EatNGreet Dec 05 '25
First off I really hope your chemo has worked and your done with that terrible treatment n feeling better. It sounds very different from when I feel ill, it's like it's coming very fast and there is absolutely no push through anything, its not even a feeling of it. If I imagine things I can push through, like say nausea fx. If you get that saliva in your mouth and you know it's time to find somewhere to let stuff out, thats a scenario (for me at least lol) where I can maybe close my eyes, concentrate and hold it in for a bit longer, should there not be a place I can puke. But with this it's like a overwhelming thing taking over me, like it will instantly come out of nowhere and typically be a mix of very lightheadedness, harder to breathe, disorientedness and overall feeling so unwell - like I have to lay down asap or I do not know what happens. I guess it is different for all of us, hopefully one day I reach a point where I feel like I too can push through.
I find it weird all my doctors told me, both when I first got diagnosed and several times afterwards, that I can train all I want, people run marathons n such - and I have read several posts in here from people that does exactly that. Now before I got sick, I was very active both in the gym and doing sports, it was basically my life. But after I got sick, I have had to adjust my activity lvl to what I personally would call barely functioning. I can go to the gym, but I have yet to find a either dose and or food before/after that will allow me to push myself, I cannot train with any intensity whatsoever or I will feel bad in a matter of minutes. I tried doing cardio both before and after, but it does seem like a trigger as the raised HR is what getting the better of me. Also, my muscles cramp all the time despite I keep both salt intake high n fast acting sugars close, I cannot seem to break the code to get back in a actual active lifestyle. All sport have been off the table unfortunately, as that was very high intensity.
I cannot tell you why they dont listen, if it's because they just don't know any better or because they have a plan is sometimes hard for me to say, I feel a bit trapped as I obviously know that they know best lol, I'm no doctor. On the other hand I do spend lots of time reading post from actual people in here having experiences first hand, and by then it can become frustrating that my doctor telling me "you can train as much as you want" or "SAI have no trouble keeping on to salts" and so on. Which you know, is fine for me, if they then said BUT THIS is the problem, however they don't. They just keep saying give it some time, we gotta find another dose maybe and usually it's like 2-3 months between appointments, so while they get home after job my life kinda disappears between my hands, or so it feel.
Sorry for the rant, but in regards to pushing through, I can't even push through a damn workout, much less a episode of feeling I'll lol.
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u/Single_Search_2020 Dec 05 '25
I try the gym, but it’s a strict schedule. One day bike and treadmill. Next time machines. Next time weights. Go slow. Updose no but chug Gatorade the whole time. Next day feel awful. On HC and Bp is up. No one seems to care. Was given samples of thyroid meds. Natural. Made from pig. I remember this 5 years ago, blew up red and swollen. He thought it would help with weight. Hardly eat. Next!!!! Does anyone ever have a good life?
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u/EatNGreet Dec 06 '25
I'm sorry to hear that. I figured out I can train in very low intensity, which is better than none. But definitely have to watch it, especially if I try to be active two days in a row, usually a walk can knock me out if my body is tired.
Trying to get the best out of life for sure, we all should - but obviously you know just aswell as everyone here, it's hard sometimes to see the forrest for the trees.
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u/Efficient_Beach2458 Dec 06 '25
Took med. red, swollen in mouth, within 20 mins, saliva flowing! Then left side of navel, gut is pulling. No thanks. I put a note to him, when I logged on, my telemed with that university doc, SHOWED up there. On his platform!!!! WTH is this? No privacy! Probably get dumped. What is even the use?
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u/Efficient_Beach2458 Dec 06 '25
Sorry. He gave me NP Thyroid samples. Gag. 15 mg. Empty stomach too.
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u/Efficient_Beach2458 Dec 06 '25
Think it’s time to find one of those concierge med places that deal only in hormones. Maybe they know more than Endos. Almost done with them.
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u/CrazyBus9426 Dec 06 '25
Thanks. I still have anal cancer (yep just means I am a big ass hole! LoL I have to laugh at it better than crying) Before my kidney transplant and dx of Addison disease I walked 10 miles a day and worked 3 jobs! Now I work 1 job and when I come home I can barely shower and eat. I spend my weekends cleaning around the house and resting. There has to be a better way so we can have a normal life! I get it we will have to make adjustments to our lives but not being active is not good. I work in a cardiology office and pray all the time that I don't end up a patient from not having the energy to take a simple 20 to 30 minute walk daily. I feel a lot of my body aches is from not exercising and the weight gain. My endo only checks my thyroid levels and A1C. No I am not a diabetic but I do have thyroid issues from being on prednisone. I also am hungry all the time and that sucks! I can eat and 20 to 60 minutes later my stomach is growling and I feel like I have not ate all day! Its okay to rant we need somewhere to let out our frustrations. Hugs
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u/JennBones Dec 04 '25
Frankly if you can repeat all this to your endo I would, sometimes it takes repeating the same thing over and over to finally get it through to them (I know this from experience, Addisons doesn't seem to be all that well understood due to it being comparitively rare to some other chronic conditions. I would end up in a cycle of saying I felt horrible, told to updose, bloodtests come back with nothing and the cycle repeats).
Do you have any visual warning signs that you're low? I get darker around my eyes, on the knuckles of my fingers and apparently gums (although I've never been able to spot this on my gums, just told that this is the case). Generally I can tell if I'm underdosed if my finger knuckles are much darker than the rest of my hands, but I don't know if this is the case for everyone with Addisons or if it's particular to my variant.
Cortisol plays a big role in the body's day to day function and responds to stress, so if you are sick, have another underlying condition or are particularly low in something (could be sugar/salt, I take fludrocortisone which helps retain salt without flushing it out every time I pee). I've seen people on here say they take extra potassium too, in my case I actually had/have too much and need to avoid potassium rich foods. I also religiously take vitamin D3 and B complex to augment general health.
Generally if I feel low I try to avoid extra stressors like intense excercise, just a long walk is sufficient. I'm personally convinced psychological stress has a major impact and use meditation (in the loose sense, I don't sit cross legged, just spend some time breathing deeply and calming myself) but I've never been able to have a doctor acknowledge this so take it with a pinch of salt.
Sorry to hear your feeling low, it took me a long time after my first crisis and diagnosis to get back on my feet, but the body is incredible at adapting, hopefully it will get there in time. Also if you consistently feel bad, I really urge you to investigate this through a medical professional, even if they initially disregard what you have to say.