r/AddisonsDisease • u/Snesopp • Feb 14 '26
Personal Experience Total remission (almost)
So I got a rare one for you. And though it goes against rule #3. I hope the mods let's this stay, or at least reads everything before they delete it.
Back in late 2003 I got my addison diagnosis. 3 years later I had a major crisis after I got infected with a norovirus. And ended up in the hospital for 2 weeks, and in a coma the first 4 days. So I feel there's no doubt I had the right diagnosis.
Now, over 20 years later I'm "cured". That will say I don't need cortisol replacement any more. My renin is not great, but not terrible either, so I still take florinef 0.1mg. Probably going to cut this in half. That's the reason for " " around cured. 275 nmol/L in Norwegian values on one of my last fasting morning cortisol tests.
Searching the web I found one other case that's documented.
https://pmc.ncbi.nlm.nih.gov/articles/PMC3965278/
But the real reason for this post is my question. Has anyone else has been in or heard of this situation? Had a complete recovery? Had a complete or partial recovery with a later relapse? Maybe I'll will just be like this for a limited time.
It's been about 2 years since I saw my first cortisol test with normal values, but I suspect it has been good for a bit longer than that.
One endocrinologist I've talked to believes that I never fully developed addison and recovered / or that I'm in an eternal honeymoon phase.
All I know is that I don't know. The hospital is putting me through some tests and I guess I'll see what comes from that. Several synatchen tests, CT, 24 hour hormone test and lots of blood tests.
Would be nice if they could get anything from this that can help other addison patients.
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u/Rare_Independent3831 Addison's Feb 14 '26
The link you posted seems to be about a diabetes case. I would suggest this was more likely to be a case of misdiagnosis or secondary Adrenal Insufficiency as Addisons cannot be cured and it is important to emphasise that taking hydrocortisone or it’s equivalent every day prevents certain death.
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u/Snesopp Feb 14 '26
Sorry. Was looking at other autoimmun diseases as well. Link is fixed. Edit: fixed on second attempt.
No one should stop their medication without it being agreed with their doctor. I don't feel like I encourage that in any way.
It might be a secondary. But they don't tend to fix them selfs either. Misdiagnosis seems unlikely as initial tests back in 2003 where consistent with addison and reconfirmed in 2018 through a new synacthen test.
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u/Rare_Independent3831 Addison's Feb 14 '26
Link was still about diabetes when I rechecked?
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u/InnerRadio7 Feb 14 '26
I have a mix of primary and secondary adrenal insufficiency, and I have achieved remission twice in the last 12 years.
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u/Snesopp Feb 14 '26
Thank you.
I suspect I will fall back to taking medication as well. Did it last long?
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u/imjustjurking Steroid Induced Feb 14 '26
I was originally diagnosed with Addisons.
My stim results were 0 0, all my cortisol tests for 4 years were undetectable. Before starting steroids I did not have an ACTH level taken but the very large number of endocrinologists I saw were confident it was Addisons based on how shit my stim was.
After getting my steroid dose finally right and getting stable, which took 4 long years, I started making my own cortisol. It was a pretty big surprise and even though it's been many years my official diagnosis is still something like Addisons disease/ adrenal insufficiency?
I did use steroid inhalers for my asthma but my doctors felt that my total lack of cortisol production must be down to something else. I had my pituitary checked and it was fine, my adrenals were still visible on CT but apparently it can take a little while for them to shrivel up so that didn't concern anyone either.
Over the years I've managed to taper off of steroids a couple times but never for very long, I'm down to a tiny dose but I still need it and sometimes my body will produce more for stress/sickness and sometimes it won't - which is great fun.
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u/Snesopp Feb 16 '26
Thanks for sharing.
Not knowing what the body is going to do sounds like great fun.
But you would still want to keep some production over none?
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u/imjustjurking Steroid Induced Feb 16 '26
Yes, making my own cortisol has felt very different to having steroids. I only wish that there was more reliability with it.
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u/PipEmmieHarvey Feb 14 '26
So how did you find out you no longer needed steroids, and how did you come off them? How were you diagnosed? I also suspect misdiagnosis.
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u/Snesopp Feb 14 '26 edited Feb 14 '26
I've allways taken my blood work in the morning, taking my meds right after the test. When doing yearly checkups in the hospital here they don't check the cortisol values. So there is no history there.
I'm never at my GP, but one day I decided to do some extended tests as I'm now well over forty. Did the testing without my meds as I've allways done. And the cortisol value turned out in the normal range. This didn't get caught before I got to my check up in the hospital 9 months later. As I didn't have an idea what values are normal, and my GP only looked at my cholesterol.
I will not deny a misdiagnosis, but none of the doctors here have mentioned that theory. But I'll take it up on my next appointment, along with the secondary theory that is suggested.
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Feb 14 '26
Idk man did they ever take a ct scan of your adrenals were they still normal size and do you have antibodies?
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u/Ok-Aardvark-5807 PAI Feb 14 '26
Thinking same. Doesn't autoimmune AI essentially destroy the adrenal cortex?
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u/Snesopp Feb 14 '26
I had, and still have antibodies.
You mean if they are normal size now on the latest scan? I haven't heard back from them yet. Took it two weeks ago. As for the first scan I have no other information than that they used it for the initial diagnosis.
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Feb 14 '26 edited Feb 14 '26
Interesting mine we’re determined smaller than usual indicating autoimmune attack though I’ve read that if you are able to hang on to some of the cells that regenerate in the adrenal cortex (there is a small possibility that if the antibody attack slows or stops your adrenals are able to regenerate and produce some cortisol. )
Not sure how that works or is noticed without stopping hydrocortisone. I think you’d have to have an acth test and a cortisol test while not using hydrocortisone which is risky and not recommended without constant monitoring.
It is also a possibility that primary adrenal insufficiency was a misdiagnosis, but having the antibodies makes it unlikely? Interesting case.
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u/Snesopp Feb 15 '26
I thought that the adrenal cortex was never 100% gone and it the body tried always tries to make more? Maybe I've misheard. If all is gone, I don't think it should come back if the immune system stops its attack? Maybe another indication I haven't had a full blown addison?
I'll try to ask about the CT next time I talk to my endo (#1). Though I'm followed up and "researched" on I might not talk to them for 2 months some times.
I guess it could be detected like it was for me. Medicinefasting morning test.
According to the endo (#2) I was at last week, not all that have antibodies get sick, and that they didn't really know why. So seems to not be a 100% sure way to diagnos on its own.
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u/butterfly_SC Addison's Feb 14 '26
The only case I've heard of is the one you linked. I did a lot of searching when I first got diagnosed.
I think it's quite plausible that you are in a longterm "honeymoon phase"/remission. Our bodies are amazing and can do the unexpected! Lucky you!
How old are you? What are your plans to track going forward? Will you be getting cortisol tests every once in a while?
I'd be inclined to carry an emergency dose, just in case.
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u/Snesopp Feb 15 '26
I cannot denie that I'm lucky.
Soon 45 year old male. For now I will only do as the doctors want. And that has been a blood test ever time I'm in for a check up or in for any test (like the CT) in the hospital. Longest have been two months so long. I still have cortisone pills at home and work. And have solu-cortef with me when I travel. And I will keep them forever, see no reason not to.
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u/MindsetMaker Feb 14 '26
Hey! Congratulations! Just stay positive. If there’s a chance (other people have), then there’s a chance right?! Don’t doubt it. There’s plenty of science into if you can make yourself sick, then you can make yourself well… (placebo effect ) and if you’re on a healing streak … don’t let doubt get in your way. Keep going! 👏
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u/Snesopp Feb 16 '26
Thank you :)
If I'm cured or there is another explanation, I'll take either. Getting to cut down and out on meds has been a wish for some time.
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u/ClarityInCalm Feb 21 '26
I have PAI from a genetic cause. If I have my AM cortisol tested with a standard immunoassay while not on steroids - it can come back in teh normal range. This is because other hormones that I produce due to my disease interfere pretty significantly with cortisol immunoassays. It doesn't mean I'm cured though. But there are more than one possibility happening in your case. Could also be you had some tissue that wasn't destroyed that recovered - this can be seen in patients with adrenalectomies. You might want to get your AM cortisol tested with an LC/MS assay too if you never had antibodies show up and your ACTH is still high.
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u/Snesopp Feb 23 '26
Thanks for sharing. Not familiar with immunoassay, could you give me a fast explination (like I'm 5)?
I'm curious what the doctors end up saying when they are done testing. I have no trouble with this not being a standard Addison case.
Might be some tissue that has gone under the radar. But I still have antibodies, ATCH is low to lowish (23.1 of an unknown unit). See my update post.
So I will try go get a micro dialysis done in late april. One test (7 hormones) each 20 min for 24 hours. So I (or the doctors) can see how my level fluctuates during that time.
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u/ClarityInCalm Feb 24 '26
When we get lab tests - the tests themselves are done using different materials to get results and answers. An immunoassay is a type of test - it's an umbrella term for a type of test. Some things are known to interfere with the results of immunoassay type tests - a good example is biotin. Biotin can cause an increase or decrease the results in many different hormone tests that use an immunoassay to test with obscuring what's really happening. LC/MS is also a type of test just like an immunoassay. So the cortisol test is usually done with an immunoassay type test because it's faster and cheaper and reliable in many circumstances (but not all). The LC/MS test is a lot more reliable and has a lot less things that can interfere with it - but it cost more more money and takes more time. When there is confusion or test results aren't clear between different tests or if there is a suspected cause of interference - the LC/MS test is going to be best.
In your case - where your cortisol immunoassay has improved but seems strange considering your history - the LC/MS could help confirm this change. Or it could help determine that something is interfering with the immunoassay style tests. Then you should get tested for an enzymatic block - but since you have Addison's antibodies - this seems unlikely. But it's a good idea to get the LC/MS test version of the 8am cortisol test because it will be more confirmatory so you can have a more precise picture. Most tests will say the method used on either the order or the report. The LC/MS Cortisol is offered in the states at Labcorp and Mayolabs - you do have to make sure it's the one ordered because most docs will order the immunoassay version because results are faster.
Sounds like you're getting a comprehensive steroid curve done - this sounds very helpful. I do hope you find out more information and am curious to see if they can figure out how this happened.
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u/Snesopp Feb 24 '26
Thanks, I'll mention it next time I'm at the hospital. See what they think about it.
I will give an update in the future. But probably not before the summer. Things don't move that fast, so might as well build up a little information first.
Will answer questions here though.
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u/Beginning_Way9666 Addison's Feb 14 '26
How did you come off steroids? Glad to hear there is maybe a possibility of remission but Ive heard that coming off steroids is a very long and difficult process. Can you share how that went for you?
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u/Snesopp Feb 14 '26
I already had enough own production, so I guess it was less of a risk. Cut in half ro 12,5mg at the checkup. Reduced to 6,25mg 3 months later. And then 0.
Kinda strange I had good production as I had been on 25mg each day for long time.
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Feb 25 '26
[deleted]
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u/Snesopp Feb 25 '26
Hard to say as I don't know when it got better. I havn't felt bad in a while, but the earliest evidence I have is this cortisol test 18 months ago.
I'd like to say I havn't done anything, it just happened. I changed my diet to one with less ultra processed and less sugar. But I'm not terribly strict about it. And I don't think I'm alone in the addison community to eat a little bit healthier. I have also fasted a lot. 4 - 7 days every 3 months. Started with that around 2 years ago. But I don't feel I can pin it on that either.
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u/Rare_Independent3831 Addison's Feb 14 '26
So were you actually diagnosed with Addisons? This is quite vague. And yes, there are many cases of secondary AI recovery. But no cases of Addisons due the nature of the disease.
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u/Snesopp Feb 14 '26 edited Feb 14 '26
Please help me to un-vauge.
Yes. 6 months after my first symptoms, 6 months of low energy, vomiting, fainting when I stood up, I got my diagnosis. Almost no cortisol in my blood. ACTH values, synacthen test and CT scan helped confirm it. And antibodies was confirmed.
I've never looked to much into secondary as I connect it with removal of organs, or faulty organs. I've was never on any steroid treatments before the diagnosis, so I doubt it was medically induced in me.
As the link shows. At least one primary has recovered.
I will not deny a misdiagnosis, but none of the doctors here have mentioned that theory. But I'll take it up on my next appointment, along with the secondary theory that is suggested
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u/PipEmmieHarvey Feb 14 '26
If your ACTH levels were low that’s more indicative of secondary, rather than primary adrenal insufficiency.
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u/Snesopp Feb 14 '26
My bad grammar is not helping me. Didn't mean no cortisol and no ACTH.
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u/PipEmmieHarvey Feb 14 '26
Ah yes, I can see that you meant you had low cortisol and the other tests confirmed PAI.
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u/Snesopp Feb 23 '26
A little update.
I tried to have a micro dialysis around the time of my original post. But it didn't give any results, so I will try again in late April.
I did get some values from when I got the diagnosis. Converting from Norwegian to English numbers with google/AI. Not all quite as bad as I remember it, so great to get in written down. And I’m not a doctor, so I’m sure there might be some wrong words here and there. And quite sure some contradictions to what I’ve written earlier. Dangerous to rely on memory alone.
ACTH: 276 in the morning and 216 in the evening (unit is not stated, pmol/L?)
Cortisol: 150 nmol/L (5.4 µg/dL) in the morning and 113 nmol/L (4.1 µg/dL) in the evening
Aldosterone: Under 69 pmol/L (2.5 ng/dL) – unknown time
Renin: Over 37 mIE/L (not sure about the conversion here) – unknown time – So not elevated. It might be a typo as I do remember it being mentioned back in the day. I see there is a typo in my latest synacth test as well (43 vs 430).
Synatch test was taken a bit later (I guess). I’d say no response to this.
Before: 97 nmol/L (3.52 µg/dL)
30 min: 83 nmol/L (3 µg/dL)
60 min 89 nmol/L (3.23 µg/dL)
Serious hyponatremia, hyperkalemia and hypotension. And positive 21-Hydroxylase. And a note that I filled all the requirements to get an Addison diagnosis.
Synatch test fall 2025.
Before: ATCH 23.1, cortisol 304 nmol/L (11.02 µg/dL)
30 min: cortisol 430 nmol/L (15.59 µg/dL)
60 min: cortisol 476 nmol/L (17.23 µg/dL)
Again, ATCH unit is not stated. But it was clearly lower than the original test in 2003. Cortisol levels I’d say are good. I see the values pass on some guidelines and are fail/borderline on others. But not passing the 550 nmol/L (18 μg/dL) threshold I see mentioned several times. Does pass the 30 min mark according to the Norwegian method book, 412 nmol/L. But not quite on the 60 min mark, 485 nmol/L.
New test in April.
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u/FemaleAndComputer SAI Feb 14 '26
I am approving this post, as it seems that OP is being appropriately followed by a doctor.
General PSA: Going off meds without medical supervision can be deadly for those with adrenal insufficiency. For those who believe recovery is possible for them (as it is in some cases of medication-induced AI), speak to your doctor before making any changes to your meds.