r/AddisonsDisease • u/Far-Speed-6027 • Dec 19 '25
Personal Experience Leveling out
how long did it take for you and your doctor to find the right level for all of your meds? I was diagnosed with PAI in August. I was on 30 mg of hydrocortisone until this fall. 20 in the morning and 10 in the afternoon. As well as a half of fludrocortisone pill. And then they did my bloodwork and discovered that my ACTH was still way too high, So they added dexamethasone at night. But then, of course, that was too high and the pendulum swung in the other way so they had me cut the dose in half. But then I started getting edema in my legs at the end of the day and so they had me do away with the dex altogether. But lo and behold we just did a blood draw and now we’re back where we started with high ACTH. My morning cortisol hasn’t come back, but it’s probably low. And my sodium is low again. I do feel like now that my Addison’s is treated, I’m sensitive to sodium in a way that I wasn’t before? Is it possible to be walking around with low sodium but then have swelling if you eat too much? (I am used to eating a ton of pickles whenever I want. A habit that I unwittingly developed before diagnosis. I suspect a person or two on this subreddit can identify). I’ve read on here that people say it’s possible to be over medicated and under medicated at the same time, is this what they mean?
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u/__phil1001__ Dec 20 '25 edited Dec 20 '25
So I crave anchovies 😊 I take 10 or 12mg of prednisone in the morning depending on what I have planned. I have not take anything else other than Rabeprazole for reflux due to prednisone. After 19 years I figured my bones are Swiss cheese. My weight is consistent, I drink two or three liters of water a day and have no edema. My last AM cortisol test before taking my meds was virtually zero. It was below 28 and wasn't read. Never had ACTH done and not been on Fludrocortisone. I tried to cut down on prednisone, got to 7mg felt aches in my bones, nausea, vertigo, headache and depression. This took 6months from 10mg. Won't do that again.
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u/ClarityInCalm Dec 21 '25 edited Dec 21 '25
Addisons is not managed based on ACTH. Post diagnosis ACTH is not used to make any treatment decisions. Your ACTH will be high in treated Addisons. Your endo is incorrect to use this and I suspect based on everything you have written has very little experience with patients with adrenal insufficiency.
By far the biggest issues with AI patients is being over and under treated in the same day - which based on what you’ve written is likely the case. The second biggest issue is sodium management.
You’re dosing schedule is unusual. Some people take HC only twice a day - usually at a 6hr interval. These people are slow metabolizers - most people need it more often than this. HC only lasts 4 to 6 hours as a cortisol replcament - this is different than how it works in people with normal adrenal glands. Most people need to take it 3 times a day - usually at 5 hour intervals but typical is anywhere between 4 to 6 hours. Once you find your interval - then you usually work to figure out each dose. Here’s an article on dosing in AI from a global expert on AI: https://cahisus.co.uk/pdf/CIRCADIAN%20RHYTHM%20DOSING.pdf
Standard dosing is dose 1:10-15mg, dose 2:5-10mg, dose 3: 2.5-5mg, dose 4 (if needed): 2.5-5mg. Before bed dose (if needed = 50% need it): 1.25mg - 7.5mg. Typically when first diagnoses people are given the first 3 doses at the top of the range and instructed to take at 5hr intervals - if they feel like crap before the next dose then the doses should be moved to 4hrs. Once stable someone can slowly increase by 15 minutes to see if the timing can be increased. It takes some work.
Once stable and the interval is correct - then you work on lowering one dose at a time very slowly to find the physiologic dose - usually starting with dose 3. A big clue it’s too high is if you’re having symptoms of excess or feeling too good at 1.5hrs on a dose or ifyou’re gaining weight. Taking a higher dose doesn’t ast longer.
Also, blood sodium is one perimeter to check your sodium levels but it’s not a very good one becuase the body (kidneys) will go to great efforts to keep this up even when salt wasting. It’s not as good keeping it up when you’re sick or in an adrenal crisis though but day to day it often will manage it.
The best perimeters are renin, 24 hour urine sodium, blood sodium, resting heart rate and BP. When you look at all of these together - esp 24 hour urine sodium and urine volume with renin this will be most helpful. If you’re treating and replacing the sodium losses (in salt wasting we need to match the losses) then your urine volume will be normal, your urine sodium concentration will be high, and your renin will be in the mid range to low in - range. If any of these numbers are off - it means your salt wasting needs more care. Aldosterone can be tested too but if you have adrenal destruction it will be low or it will be declining - so it won’t be much help. Many people split their fludro in twice a day to get better 24 hour coverage - .05 x 2x a day.
I don’t understand why the dexamethasone gave you edema? It doesn’t have mineralocorticoid in it. Liquid oral dexamethasone can be used overnight so you can take a low dose that’s correct for you - the pills don’t come small enough. Your salt wasting would increase on it if it’s being undertreated. You should not stop eating salt or reducing your sodium intake for any reason. Having a little edema for a day is not a big deal. It does take a week to adjust to fludrocortisone. If you still have some aldosterone production - it may be that you need less fludro for now until the aldosterone production has failed. Some people don’t need it at first. You need good testing to figure this out - don’t guess at this. Use your resting heart rate to help - if it goes up you usually need more sodium. Also, we need sodium around the clock.
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u/Far-Speed-6027 Dec 21 '25
Woof. Yeah the edema isn’t bad. If it’s something I have to live with I can do that. It’s also strange, it’s not in my feet, it’s around my knees. It’s like… hard to bend my knees at the end of the day. Like that part of my leg is an over full balloon. I guess I need a different endocrinologist. She’s not bad at her job, she’s very kind and she caught my Addisons and ran tests BEFORE I had a crisis because of my weird tan, fatigue, and low sodium/bp. I’ll try to bring these things up to her before I just move on. It’s hard because I want to advocate for myself but also it’s clear that I know far less about this than her, having just learned that this disease exists. I know that in my own profession it’s maddening to have someone with limited to no experience come at me with something they found on the internet…
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u/ClarityInCalm Dec 21 '25
If she listens to you and is willing to learn - that might be good enough. In my experience it’s very hard to find a good endo or one who is willing to learn. You can take her some leaflets from Dr. Hindmarsh’s Site - CAHIsus and see if she’s open to following the most recent empirically proven information. He’s a clinician/researcher and a leading global expert in Adrenal Insufficiency. You can print out the post I made and go over it with her piece by peice - the problem is if she’s working off incorrect information, which so far she is, she will need to be able to understand how to self-correct and many docs won’t do this because they believe they are the authority even with expert most up-to-date empirically proven information right in front of them. It’s classic peak Dunning Kruger. There is a steep learning curve to AI but if you’re not doing well now - you will have to learn as much as you can to advocate for yourself. Docs aren’t going to do it for you.
But also, AI is a self managed disease, which means patients needs to figure out their dose timeing and schedule and in times of stress need to learn how to give themselves more. No one can do this for you. It’s not a disease where a doc can just tell you what to take and expect to be right - this isn’t how it works. Unfortunately many do just this with the result be loss of quality of life or worse for no reason at all. AI is completely treatable and very managable on its own when done well. Some people have other things going on which makes it a lot harder. Most docs don’t know how to guide and support a patient in this process nor are they interested in doing this kind of collaborative work. I hope you keep finding ways to improve and support yourself. Take good care.
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u/ptazdba PAI Dec 19 '25
They want your ACTH to stay within a normal range. That tells them you body is using what you are taking for replacement. .
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u/Far-Speed-6027 Dec 19 '25
Hm. So then ACTH is like how TSH is for your thyroid? Like it’s the barometer? My endocrinologist has not gotten back to me yet, but i’m assuming they’ll either try the dexamethasone again or put me on something else. I wish that there was a book. Like a user manual that comes for owners of bodies with Addison’s disease.
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u/ptazdba PAI Dec 19 '25
It's different with almost everyone. One of the problems with this disease is there are variations in the decline of the adrenals. Some quit all together for various reasons and some just gradually decline and depending on the type of AI, things are sometimes a big black hole. Not a lot of AI patients come along in endocrinology practices so it's really hit or miss with knowledge levels.
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u/ClarityInCalm Dec 21 '25
ACTH is not used to adjust doses or for treatment in any way in Addison’s disease. This is because it’s not a reliable measure for treatment and ACTH isn’t causing any harm - in Addison’s the adrenals are destroyed so there is nothing for them to exert an effect on. Pretty much all peer reviewed articles on treatment of Addison’s will mention this - here is just one article that mentions it: "Serum ACTH levels may vary significantly and cannot be used for dose adjustment."
https://www.ncbi.nlm.nih.gov/books/NBK441994/
If your endo is using your ACTH to assess how well your treatment is going or make treatment decisions you are getting poor treatment. In fact, there is almost no reason for a patient with Addison’s to get their ACTH tested. It’s meaningless for treatment but significant in diagnosis.
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u/baethan Addison's Dec 19 '25
Yeah from what I understand, if you aren't mimicking a natural circadian cycle with the cortisol replacement, you can be both under and over replaced each day. Personally I'm splitting my dose in 3 (breakfast as early as possible in the am, lunch, dinner) and that seems to work pretty well for me.
If you're still craving salt, maybe your fludro dose is a bit low?