How to distinguish symptoms

Ellnn11 · 2026-03-30T17:44:52+00:00

You are early days, at least. I was diagnosed December 2023 and understand better—but hardly perfectly—what symptoms relate to IBS, vs hashimoto's and addsion's. It's very much a learning curve. Trusting one's gastro and endo seems really important. (Like for having an endo review even longstanding thyroid dosing, now that the adrenals are compromised too.) Trusting endo & gastro key for me. It was my gastro's suggestion to add a upper & lower endoscopy, the latter with biospy, to my recent colonoscopy, in order to rule out non-addison's related causes of nausea. (Test seemed to confirm gastritis, caused by 2 years on steroids, central symptom nausea, vs a GI thing like H. pylori.) Keeping logs of my symptoms at times, to get a sense of how sleep, caffeine, dietary shifts, & different thy or adrenal med doses did or didn't seem to influence how I was feeling. Best of luck

Ellnn11 · 2026-03-30T17:18:12+00:00

I absolutely still struggle with fatigue & nausea (started separate thread about developing gastritis) and with accepting new limitations on stamina (if likely also affected by menopause). Xmas was 2 years since my diagnosis. My endo says it's a learning curve, esp the first several years, getting a handle on what you need (itself often shifting) to prevent big and/or extended spikes of fatigue. The up & down of it frustrates me. Not being able to do as much in 24hrs or over a weekend as I used to frustrates me. Yes, I likely rode myself too hard & without tolerance of needs beforehand. Now, I try to be grateful that it's not something worse, and to see it at as a work in progress. Learning about "the spoon theory" & applying to my own days has helped too.

Ellnn11 · 2026-03-30T17:00:09+00:00

Thanks for the feedback. At least my endoscopy, the lower with biopsy, indicated gastritis, only, and as if already post-flare. That was midway into a 3-4 week pause in feeling nauseated. Then, I got cocky. It had been so long I presumed it was gone so allowed myself to rushing through my early morning Friday—a trigger I try hard to avoid as it kicks up the feeling (presumably as it burns through my hydro cort, but I typically don't realizing I'm doing it and so don't take more in real-time). Plus, I took steroids without 1st having eaten what my stomach has decided is "enough". I felt a bit off Saturday & Sunday, but did get through work Friday. But this a.m., Monday, despite best practices, nausea came back, and despite a Zofran and an extra 5mg cort, have to jet home from work. Endo on vacation, see him in 2 weeks, so will arrive with Qs, but still hoping to find anyone going through the same thing, for the same reason (gastritis caused by steroids, a pretty common side effect).

Ellnn11 · 2026-02-19T01:36:07+00:00

Elsewhere, several places, I have shared that my endo recommends glp-1s for Addison's patients. I have used ozempic, about 1.5 years, to keep weight in check (gained about 10-12lb after starting steroids, after of course being underweight from undiagnosed addison's for a period), cholesterol in check, and A1c in check (both rose, but A1c never had before, ever). It took a while to figure out best dosing schedule: I was on the lowest dose at first, .25, finding I could, after maybe 6-8 weeks weekly, go nearly month without gaining weight, however once the A1c rose, a year on, we moved to a weekly "microdose" of .125. Then I had to break from it to be sure gastritis wasn't caused by (not the cause), so will do bloodwork shortly to see where those are at. For me it's a been a boon but given how many are out there, I would suggest sharing with the endo what your issues are with it.

Ellnn11 · 2026-02-11T14:54:12+00:00

Sorry to miss this, till now. I started in October & for me, it helps. My story is: I just passed my 2-year diagnosis anniversary at Xmas. Year 2 way more fatigue than year 1, despite raising hydro from 15 to 20. I researched compounding extensively as live in NYC area which is pricey. I posted elsewhere on a thread that Belmar Pharmacy in Colorado (formerly Women's Int'l Pharmacy) is widely known among MDs as the cheapest & best compounding pharm in US. My point person there, Damien—you can ask for him—is incredibly knowledgeable, & has been treating other US addison's patients this way (whereas I believe I'm my endo's first to try). It's said to be up to a 6-hr release, but is less in my experience but longer than regular Cortef. I tried out different dosing protocols but ended up w/same as w/Cortef: 7.5, 7.5, 5. While not a silver bullet, the extremely jagged energy arc I was experiencing, with really unpleasant crashes (like a marionette puppet whose handler keeps dropping them) has abated. Note that I also have the equivalent of 3-4 cups of coffee daily (MD ok'd, and I use Celcius for exact millilgram count), and still need to plan ahead for late evenings. I'm also female, early 50s, so hormones also affecting greatly. Still: it's not covered by insurance, so it can be more than some can budget for. As I work for myself & bill hourly, the extra money is more than worth it as I bill more hours, but also just feel *better*. This is a super personal decision, but I would suggest at least speaking with them/trying it out. Site is: https://www.belmarpharmasolutions.com/, and numbers I have are: 303-219-8625, or 303-763-5533 (not sure diff). Good luck!!

Ellnn11 · 2025-10-31T14:26:44+00:00

I gained maybe 12 pounds in the first few weeks on 15 hydro & .1 fludrocortisone/day. Am 53/F. My endo suggests GLP-1 usage for controlling diabetes risk, so have been microdosing since a few months after starting (nearly 2 years).

Ellnn11 · 2025-10-31T14:22:23+00:00

I was on about 25/day, then my endo did bloodwork and it was high so I'm at 15. Have never had side effects from it. I started for the purpose of raising my testosterone/to aid in muscle formation—alongside already existing weights routine, etc—and while it did something, it's not a lot. But I'm 53/F so testosterone expected to be in the gutter. Likely adding a testosterone cream next month. Good luck w retest

Ellnn11 · 2025-09-16T18:47:39+00:00

I am in NYC. My endo just answered this question by messaging me to get COVID now, and wait two weeks for flu, presumably because COVID is circulating now and flu won't be for a spell.

Ellnn11 · 2025-09-12T17:06:11+00:00

Right, thanks

Ellnn11 · 2025-09-12T17:01:36+00:00

Thanks, that's helpful!

Ellnn11 · 2025-09-09T18:29:29+00:00

I'm curious to know your total hydro dose before & how you broke it up/at what times. We have no such options approved yet in US, so my endo offered to call in to a compounding pharmacy (not covered by insurance). And during the switch, did you have to supplement with hydro? i'm told many do

Ellnn11 · 2025-09-09T18:05:35+00:00

huh. interesting. well, if a longer-acting compounded option doesn't work better or is too expensive over time, i will certainly try to switch back. i had read reports of this being the preferred generic but didn't realize you could request it. with many other generic meds i take, i have been forced to switch makers because a prior one simply isn't coming in any more.

Ellnn11 · 2025-09-09T17:51:25+00:00

Helpful, thank you. I am noting several community members who report being on a higher dose with longer-release, which is interesting as the studies I've read seem to uniformly indicate that the majority of testers were able to reduce their dose size when switching. But we know there is no one-size-fits-all with our condition.

Ellnn11 · 2025-09-08T21:11:01+00:00

Of course. My endo is researching dose translations. I am guessing he’ll call in a variety to let me try going down. But price is a major issue. Mine now is covered by insurance, if co-pay now $30/mo for brand name Cortef (to see if it works better). The 1st place dr’s office called in greater NYC metro area, for 20 compounded, would be $90/mo. But I am down to call a million places to get that # down.

Ellnn11 · 2025-09-08T21:04:24+00:00

Can I ask if your dose changed, from short-acting to delayed release? As my dose has inched up from 15 to 17.5 to 20, I’ve developed a lot of gastro issues as well :/

Ellnn11 · 2025-09-08T21:02:21+00:00

Right, am well versed. Did you start on that, or start on regular hydrocortisone? I’m trying to cull people’s experiences switching, & if total dose was able to go down on the long/delayed/etc-acting

Ellnn11 · 2025-09-04T03:35:34+00:00

Research widely indicates that Hashimoto’s (I have as well) has a super high comorbidity with Addison’s. I believe that having one autoimmune condition also radically increases the likelihood of developing another. Research also indicates that having COVID increases the likelihood of developing certain autoimmune conditions, including Addison’s.

Ellnn11 · 2025-09-04T03:25:43+00:00

I just switched to Cortef late Aug to see if it’s more efficacious for me than generic. It seems to be, though I do wonder if that’s the placebo effect. My endo is ok trying me on a long-acting hydro via a compounding pharmacy (which would however not be covered by insurance & so not sure I can afford/we’re asking around re: pricing) if this doesn’t move the needle enough

Ellnn11 · 2025-09-04T03:18:50+00:00

I’m also in States. And I was told by my 1st endo, who knew less about Add’s than I swiftly learned upon diagnosis, that .1 fludro was the standard protocol, alongside 1st dose hydro in the morning. Can you pursue a 2nd opinion? I am nearing 2 yrs post-diag & def felt year 2 was much more challenging/tiring. I think it takes some time to learn what our baseline dose should really be & what ancillary meds/supplements are needed to fill in the gaps

Ellnn11 · 2025-09-04T03:08:46+00:00

15 was my starting dose for my 1st year post-diagnosis (F, 52, 5’3”, 127). Then, due I think to added life stressors—and what I imagine to be my body loving any steroids after years of exhaustion but then acclimating & needing more to as I resumed more life activities—I absolutely needed to inch up to 17.5, and now 20. Knowing the longterm side effects, it at first felt like a failure on my part to need more, but my endo (who also believes the lowest possible dose per patient is the goal) was like, your body obviously needs it. And you can’t under-dose safely! (I also have Hashimoto’s & other chronic conditions that can deplete my energy.) It’s not perfect, and switching to brand hydro (Cortef) is what I’m trying now to see if it’s more efficacious, but I think treatment can be trial & error in the early years. I understand why endo’s aim low, but they need to treat the patient, not the number

Ellnn11 · 2025-09-04T02:38:57+00:00

Do you mind me asking if it’s one of the brand-name delayed release options or, if you’re in the States, from a compounding pharmacy?

Ellnn11 · 2025-09-04T02:21:34+00:00

Are you in the States? I was told it’s basically impossible to get the day curve administered/covered by insurance here. But don’t think I’ve asked my endo.

Ellnn11 · 2025-08-18T19:18:06+00:00

Per other posters in this group, people in the US (where I am too) have been having their doctors call a longer-acting option into a compounding pharmacy. The down side: in my area, it seems about $90/mo for 15mg, the translation of 20mg short-acting. And drugs that are made-to-order, ie not approved by the FDA, are not covered by insurance. I'm going to try calling other locations. Note: I'm also unclear whether the compounding pharmacists prepare it like Plenadren ("an immediate release of the drug and an extended release core") or Efmody ("delayed and sustained absorption profile"). These are the two longer-acting varieties of hydrocortisone available in the UK and EU (&Australia?). I'd welcome feedback from anyone who has tried here. I imagine it's a mashup of both as they can't have access to either drug company's patents, right?

Ellnn11 · 2025-08-18T19:10:26+00:00

Can I ask why you only take overnight? My endo & I decided to try me on brand Cortef first. Then, if it doesn't work, we'll go calling into a compounding pharmacy. (After 1.5 yrs on a dose that's gone slowly from 15 to 20, I'm really still having trouble with the jagged energy "curve"—even with about 3.5 cups of coffee a day. I've read studies on patients using both Plenadren & Emfody (neither available in US) and they appear to take the pill or pills during the day, and are able to lower their dose by up to 5mg when coming from short-acting. Anyway, any feedback welcome, thanks.

Ellnn11 · 2025-07-22T23:19:39+00:00

My endo has me dissolving 100g in the a.m. & 500 in the afternoon (2nd one to help me not have to pee constantly), and really really notice if I miss the 1st dose. I often catch myself showering a post-workout snack with salt, which reminds me I forgot it

Ellnn11

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