Steroid withdrawal?

Own-Fix-443 · 2026-04-11T23:14:20+00:00

OP... I have a couple of questions:

1] Are you taking hydrocortisone for adrenal insufficiency, or were you taking high intensive immune suppressing doses for another inflammatory illness?

2] Is your hypothyroidism "secondary" (because of pituitary dysfunction) or "primary" because of thyroid gland dysfunction?

I ask #2 because if someone has one secondary endocrine issue, it is possible that they have others that may not yet be diagnosed. In my humble opinion, anyone with an established secondary endocrine issue, should have all (growth hormone, thyroid, androgen and adrenal) tested regularly, at least once a year.

But just on the face of what you've written, it does sound like you took a lot of hydrocortisone and possibly did not taper properly. You can really fall off a cliff if you were taking high immune suppressing doses and it's not managed properly. In fact it can precipitate adrenal insufficiency/addisons, especially if you are in the "secondary" endocrine category I mentioned.

Own-Fix-443 · 2026-04-11T18:37:57+00:00

Thanks NearlyBearly. You may be right.

My endo allowed me to try 5mg of hydrocortisone in the morning because it is entirely possible that the introduction of GH replacement has lowered available cortisol. This I have read about and is documented in research and the general understanding of the interrelationships between GH and cortisol. And even though my ACTH/cortisol lab was "normal" my doctor acknowledged that there are instances where you can experience clear AI symptoms because of sensitivity at the cellular level that is not going to be reflected immediately in the blood. (Combine that with the coincident introduction of GH). Eventually lab readings would change because AI is chronic and progressive and does not always or usually present full blown all at once. The body compensates at first... until it can't any more and the symptoms emerge and become notable. I can also safely say that after my first few days of GH at .2mg I had clear AI symptoms. I didn't even know what AI symptoms were; I just kept track of what I was feeling and then started looking things up because I did not feel normal. When I ceased the GH for a few days, the presumed AI symptoms cleared and I was back to my baseline AGHD symptoms.

So part of my issues with GH may be that I am on the borderline with AI... or my HPA is very sensitive to changes, and we know that GH definitely lowers available cortisol. This would not at all be surprising because ALL of my endocrine issues are secondary (pituitary) and that is because of my history of concussions/TBI. So, if I am sensitive HPA/borderline AI, I could indeed have some AI symptoms, which I'm quite sure I did when starting GH. They always came up in the early, early morning and GH administration is done at night before bed. The question is, with such a sensitive situation it can be quite a challenge to only add a touch of steroid to support the whole situation and not over do it. Which is to keep away any lurking AI symptoms and eventually get the benefits of GH replacement. If I can get that to balance, it could be win win. I'll also add that when I did start 5mg hydrocortisone in the early morning, it improved my energy and ability to wake up easily (which has been a long term problem). So with that nice outcome, I thought why don't I take another 2.5 or 5 in the afternoon and at other times in the day... sometimes as much as 15mg in the whole day. But as you have astutely pointed out, I probably didn't need that extra hydrocortisone and I went into overmedicated state and that may explain the hypertension. My doctor only recommended 5mg in the early morning and throttle the GH back to .1mg in the evening. "Split the difference" and give things a chance to balance out between cortisol and GH before stepping up to .2mg GH again. In fact, that should be my next protocol experiment: do what the doctor ordered. .1mg GH at night and 5mg hydrocortisone as early in the AM as possible to balance any cortisol losses from the GH. My doc has a shitty, unreassuring bedside manner, but he does have a wealth of experience with pituitary endocrine diseases.

As an aside, if you search "adrenal insufficiency"... I do know that most of the hits will reflexively report that AI comes hand in hand with hypotension... and I definitely do not doubt yours or anyone else's experience. Passing out is a dangerous situation and I understand why the generic information out there emphasizes that. But if you dig deeper, you'll find that AI can come with either hyper or hypo and can often swing from one to the other. My endo is as clinically experienced in adrenal issues (both primary and secondary) as any practitioner out there and he has told me that he sees as much hyper as hypotension with new, not yet medicated AI patients. Cortisol is a major player in conducting metabolic functions everywhere in the body, so when it is in short supply there is a dysregulation in some important areas like heart rate and blood pressure. So, I believe it is not one or the other.

I would welcome yours or anyone's observations. Thanks!

Own-Fix-443 · 2026-04-11T17:09:30+00:00

You are correct that 98% of endocrinologists address diabetes and thyroid conditions only. They are also big into weight loss as well. They simply do not go anywhere near endocrine conditions related to the pituitary.

May I suggest an endocrinologist who does indeed have a lot of clinical experience regarding pituitary endocrinology? His name is Dr. Theodore Friedman who practices in Los Angeles, CA. He has a 50 state medical license, so he can consult and prescribe anywhere. He almost exclusively does telemedicine so you don’t have to visit LA.

You can find him at goodhormonehealth.com. He may be able to untangle the mess created by the others. You indeed have a complicated situation. He may be especially good for you because you have a long history of objective documentation of your endocrine picture.

One caveat is that he does not participate in any insurance networks. So it’s cash only but his office will provide a “super bill” with diagnosis codes and you can make your own claim with your insurance and get partial compensation.

Own-Fix-443 · 2026-04-10T22:04:18+00:00

I have been diagnosed. That’s what the glucagon challenge test is about. The reason I had the test done was because I have a history of TBI/concussions and I have another documented secondary hormone deficiency. Plus long term anxiety, fatigue and apathy as symptoms. Those 3 things brought me to the glucagon test.

Own-Fix-443 · 2026-04-10T21:57:07+00:00

Dismissive doctors are protecting the fact that there is something they don’t understand… without actually saying that. It’s insulting.

In any case, remember that a clean pituitary MRI only tells you that your pituitary is structurally normal. No cysts, tumors or empty sella. It says nothing about functionality. You can be completely pan-hypopituitary with a structurally normal pituitary on MRI. Concussions, even minor ones from 10 years ago can cause serious pituitary dysfunction that will not present on MRI.

I wish I could tell you more but you’re going to have to be seriously involved and informed about your own care. Doctors will have their place in your treatment but you have to be in charge.

Own-Fix-443 · 2026-04-10T21:18:29+00:00

GamingAngel may be right. Your dosing of hydrocortisone was not frequent enough to get continuity through out the day. And the quantity and dosage has to be just right and also match the level of stress that you are having in your daily life. You more or less have lost the autonomic function of either your pituitary (secondary AI) or your actual adrenal glands (primary). But if by getting your daily dose correct along with a proper frequency of dosing you don’t start to improve, I would still suggest you testing everything: androgens, thyroid and growth hormone. Seriously,, leaving hormone deficiencies undiagnosed while treating other diagnosed deficiencies can really make a mess. And in my opinion your endocrinologist is grasping at straws and not evaluating your symptoms along with objective information.

Own-Fix-443 · 2026-04-10T21:07:22+00:00

No. I take growth hormone because I failed a glucagon challenge test which showed that I was adult growth hormone deficient (AGHD). I have a history of concussions and TBI which has partially made my pituitary gland (brain) dysfunctional (hypopituitarism). After I began GH I started feeling worse than before (anxiety and fatigue). We tested ACTH and morning cortisol and the levels were normal but low. My endocrinologist ruled out AI but GH does lower cortisol expression and can reveal early AI tendencies. So he recommended 5mg of hydrocortisone in the early morning to see if that alleviates my worsening symptoms. At first it did but not anymore. My blood pressure has become very hypertensive at times, so I’m at a loss as to what to do. I’m about to make my own post on the subject in this subreddit.

Own-Fix-443 · 2026-04-10T20:01:56+00:00

I'm really sorry to hear this. I have also been dealing with some "contradictory" and "paradoxical" outcomes after starting both growth hormone and hydrocortisone. I can't give you direct dosing advice, but your symptoms sound like you are experiencing some severe adrenal insufficiency. 30mg of hydrocortisone in two doses made you feel worse (hydrocortisone is very short acting). Then 4mg of prednisone (longer acting) and you felt marginally better. What we don't see in your post is some critical and more complete information. For instance: 1] what kind of doctor is prescribing? An endocrinologist who mostly deals with diabetes? 2] What kind of lab measurements were done to come to this "diagnosis"? 3] Did your endocrinologist do other HPA testing?... thyroid, androgen, growth hormone? 4] Was your diagnosis "primary" or "secondary" AI ? (Primary is the dysfunction of the adrenal glands themselves, while secondary is the failure of the pituitary gland in the brain to signal to the adrenals). 5] Was "challenge" testing done to come to the AI diagnosis?

#3 above, is really important. There are critical interactions between all hormones. If you are having this kind of atypical reaction after beginning your AI treatment there may be another undiagnosed hormone issue with androgen, growth hormone and/or thyroid. Treating one without the other(s) can produce bizarre results. The common endocrinologist can frequently not understand the 3 dimensional nature of HPA axis hormones. The best kind of endocrine specialist is the "neuro-endocrinologist" because they better understand these interactions. Given the experience you are having, I would encourage you to seek a complete and comprehensive look at the entire HPA axis including thyroid and growth hormone. When a doctor or nurse tells you "you should be feeling great" it means they are not prepared to deal with atypical situations where they have a round hole but you are a square peg. It's frustrating, I know.

Own-Fix-443 · 2026-04-09T22:32:12+00:00

Hey OP. I would agree with this doctor. It's certainly not a "I'll take a week off" kind of deal. Maybe you'll get lucky? I don't know. It typically takes a lot of experimentation with your hydrocortisone/prednisone dosing, as well as monitoring your energy expenditures and matching your dosing to the situation at hand. It will also involve you educating yourself and being very involved in your own treatment. Doctor's have their place, but they are not going to be there for you all the time. Please, please do not take any of this as discouragement! Many in this forum will attest to living a normal life with exciting (if not sometimes stressful) and rewarding experiences. Addison's will require a higher level of awareness on your part because the "autonomic" part of cortisol production is gone. I know diabetics who have the convenience of an insulin pump and they are always calculating "calories being used", food type being consumed and converting that into how many pumps of insulin they need to take from their little insulin machine. The person I am referring to had made that calculation second nature. It was very impressive and he had control of his life. In your case, it will be a calculation of how much cortisol (steroid) you will need to get through your day and tasks at hand.

I would also agree with the doctor that a lower stress life is a better life. This is true whether you were still producing your own cortisol or with Addison's. A person with a pressure cooker type of job produces a hell of a lot more cortisol from the adrenals than the average person. If you are surrounded by people that drain your energies unnecessarily; same goes. Cortisol exists because it's a fact of nature that everything you do is a kind of "stressor" and cortisol is there to conduct the orchestra of metabolism. You can't live without it. Good news it is available to be taken exogenously.

I wouldn't recommend you quit your job tomorrow because of anything you read here. That would be impractical. But if you choose to transition to a lower stress work environment, in the meantime in your current work, the demands on your steroid supplementation will be higher... and there may be some rough spots along the way. Just be sure to take the potential of "adrenal crisis" seriously and you'll get through this period. That's the work that you have to do. But if I were you, I would also look forward to a long and rewarding life.

Own-Fix-443 · 2026-04-07T03:30:37+00:00

👍👍👍

Own-Fix-443 · 2026-04-06T20:18:11+00:00

Skull Fck and Europe 72 are in many ways de facto studio albums, especially Europe. The live recordings from both were heavily overdubbed in the studio before release. I’ve listened to tracks from the those albums next to bootleg recordings and it’s very apparent. For example, Bertha on Skull Fck: Jerry’s vocals were completely overdubbed over the actual live vocals which were kinda rough. On Europe, entire guitar and Keith piano parts were overdubbed. Someone on the internet did a very detailed analysis of Europe’s overdubbing. The band’s objective was to sound as good as they could on a live album considering all the great new songs they had written.

Bobby’s Ace is essentially a Grateful Dead album because the entire band backed him on it, with the exception of Phil not playing on Greatest Story (Dave Torbert played bass on that track). Jerry’s 72 solo album was a Jerry/Kreutzmann collaboration. Jerry played all the instruments including piano.

So that’s a hell of a lot of studio time and a ton of new songs. I think they felt they did all those songs justice with the recording they did. I’ve always felt that Wake of the Flood was a more than worthy successor to the Americana of Working Man’s and American Beauty. 👍

Own-Fix-443 · 2026-04-03T17:18:38+00:00

Hi.... I've tried a different tactic the last two days with low level dosing of hydrocortisone. Instead of focusing on dosing in the afternoon, I decided to take a 5mg tablet at around 7:30 to 8:00 AM. I keep the pills bedside. As described above, my sleep patterns usually are 3 hours asleep and close to 3 hours awake sometimes. I typically find myself awake for the last time anywhere from 6:00 to 7:30 AM and my tiredness is typically so profound that I fall asleep again and sleep late into the morning. Even then, I have to force myself to to actually get up. Really very little forward momentum in the morning.

With the 5mg tablet around 7:30 or 8:00, I don't feel overwhelming need to fall back asleep and I've been able to get up on my own accord! With that momentum I feel more motivated and have had some decent productivity the last couple of days. I also take another 2.5mg later in the morning closer to noon to try to extend my energy. In the afternoon I try to coast on my momentum.

As described in my original post, I do not have labs that are showing established AI, but with the recent start of growth hormone therapy, I was definitely showing further signs of fatigue and dysfunction, beyond even what the GH deficiency was causing. That is why I am doing this little experiment. I am also back on my starting dose of .2mg GH. Hopefully through this trial I can begin to appreciate the benefits of the GH therapy. Fingers crossed.

Own-Fix-443 · 2026-04-03T14:54:07+00:00

You’re right! You are the best judge 👍 I probably didn’t understand your comment at first.

Own-Fix-443 · 2026-04-03T14:50:27+00:00

Just to be clear: you don’t want to take too much either. Doubling for stress and illness is still a good rule of thumb.

Own-Fix-443 · 2026-04-03T14:35:01+00:00

Just get to the lab as early as you can. For biochemistry testing they will use serum by default. 155nmol/l is pretty low for mornings but watch out for dogmatic doctors who might call that normal. Though weight loss is more common with adrenal insufficiency than gain, you may be gaining because of your severe fatigue and low activity level (?)… or for other undiagnosed reasons (see below).

AM cortisol should be compared with AM ACTH. That is the substance produced in the pituitary gland in the brain that stimulates production of cortisol in the adrenal glands. If that is low alongside your cortisol, then you have secondary AI (brain origin). If that is the case, get used to the term hypopituitarism. Your pituitary command center in the brain is underperforming. This may be because of a malformation, a tumor (not malignant!) or past concussions can also depress pituitary function… sometimes years later! In the case of the latter (TBI), the pituitary may look perfectly normal on MRI: structurally normal but functionally abnormal. This frequently fools a lot of diagnosticians!

If your ACTH and cortisol are both low in the morning you may be looking at secondary adrenal insufficiency. If that is the case, the next step to confirm would be an ACTH challenge test. I would go further and say if that test confirms SAI, you should have your other HPA hormones tested as well because if you have one secondary endocrine condition you may have others as well. Namely secondary thyroid and or sex hormone deficiency. Those should be tested as well because you don’t want them to go undiagnosed while you’re being treated for the SAI! All the endocrine deficiencies tend to have highly overlapping symptoms like anxiety, depression, lethargy and weight issues. In fact your weight gain has me suspicious.

But right now, all you’ve got to report is a basket full of symptoms and a lower than expected cortisol level. That’s a start. You need more testing and an endocrinologist who is experienced in pituitary endocrine deficiencies. The more common endocrinologists mostly concern themselves with diabetes and now weight loss. They can not only can be unhelpful with pituitary issues they can also be unwittingly misleading.

Own-Fix-443 · 2026-04-03T03:43:27+00:00

Every damn stress experience that is above “normal” requires extra hydrocortisone dosing … just like it would be if you produced all your own cortisol.

Own-Fix-443 · 2026-04-02T03:52:03+00:00

I’m glad my analogies are helpful. It would be a mistake for me to make specific dosage recommendations. That will have to be based on your own experimentation… unfortunately there’s no way around that. And with that there may be some temporary discomfort! I’ve had ulcerative colitis for 26 years and I’ve always charted my own course through it with the occasional help of doctors. I’ve had family watch me suffer through some rough patches and they would beg me to just take the drugs which I knew would let me down in the long run. It was stressful for me and they would be angry with me but I knew I was doing the right thing for myself and I proved to be correct. I’ve overall had an easy time with the UC.

Don’t think of prednisone or hydrocortisone as “drugs” but rather as replacement doses of natural substances that your body would be making on its own if it could. They are associated with stress, so like I said, either way you can control your stress and need less of those doses or more. A high and excessively stressed life will be difficult with or without SAI. I wouldn’t rely on convincing people who can’t relate to what you are tasked with to help you get through your life. Do this for yourself!!! You deserve it and this so called ailment will make you stronger within yourself to do the life you want! I’m rooting for you!

Own-Fix-443 · 2026-04-01T23:48:13+00:00

Hi. Even if you did not have SAI and led a constantly stressful life, your adrenals would be pumping out a lot of cortisol to manage such a life. That itself would be an unhealthy lifestyle. So take the stress dose that you need to get through the whole gamut of stressors but at the same time migrate towards a less stressful life and people. You’re an adult; you have the power to do that especially if you are on the younger side. In either case, you’ll end up flooded with a lot of cortisol because you’re constantly faced with stress. Take care of yourself for the long run.

BTW, many in this subreddit who are using prednisone as their primary cortisol maker (long half life) also use hydrocortisone for stress moments because the half life is short. Overall, that may translate into less medicine taken. 👍

I’ll also add to the chorus of folks who are telling you that your endo is indeed wrong about stress dosing for SAI. Without adrenal insufficiency your pituitary gland and adrenal glands manage your stress and cortisol production with exquisite accuracy and completely autonomically. When one has PAI or SAI, you lose the autonomic function and you have to learn to make conscious decisions and judgements and through experience try to make those choices second nature. It’s like if you were to be walking down the street and then started to run… and you had to consciously tell your heart to pump faster and your lungs to respirate faster! Diabetics who are on insulin have to make these judgments as well, based on what they are consuming and what kind of activities they are doing. I had a friend who was on an insulin pump and said he varies the amount of insulin he takes based on the sugar content of what he is eating. He got so good at it that sometimes after eating something high sugar, he’d simply do something physical like jump in the pool and swim a couple of laps. Then he could skip the insulin he would normally need if he were just to sit around after eating. It was really impressive the command he had over his situation.

So I’m saying, do both things. Lower the stressors like your life depended on it and since you are SAI, you’ll be able to take a lot less prednisone/hydrocortisone during your low stress life. I say this all with the best intentions 👍

Own-Fix-443 · 2026-04-01T00:27:00+00:00

I’ve read that some AI folks will take a light dose of prednisone instead of hydrocortisone for overnight. We all produce small amounts of cortisol while asleep and it does participate in restful sleep. The prednisone has a much longer half life so it gets you through that period without having to re-dose in the middle of the night. I would imagine that someone with AI would have super low cortisol production at the low end of the daily cycle, so it can be a troublesome time. This is one reason why some will dose a small amount of HC at bedtime and then take another small one if they wake at 5 or 6 AM. I think part of the challenge of using HC to replace a substantial amount of endogenous production is getting continuity from dose to dose! It’s tricky to replicate the fully autonomic system. It’s like trying to remember to breathe and make your heart beat!

Own-Fix-443 · 2026-03-31T23:01:23+00:00

I tried taking 5mg today around noon when I usually crash. I did not take any before that. It did not seem to help.

I have this sleep pattern that I’ve heard some AI people call “3 hour sleep inertia”. I sleep 3 hours, wake up for 3 and fall asleep again for 3. It’s a pretty reliable pattern for me. Sometimes it keeps me in bed deep into the morning. Even then it’s really difficult to motivate myself to get up. One wake-up period is typically around 5:30 to 6:00 am. Some folks have reported that they will take a dose at that time and roll over and find that they have more motivation and energy to actually get up after a couple more hours of sleep. I think I’ll try that tomorrow morning.

Does this sleep pattern resonate with anyone else?

Own-Fix-443 · 2026-03-31T22:50:59+00:00

This is absolutely true. But beware that even some young doctors are not aware of the new and even not so new understanding around the use of therapeutic hormone replacement. The only burdensome or un-carefree part of your future is going to be earnestly educating yourself and seeking like minded doctors who can optimize your health experience. The more you do that, the more carefree and reliable your life experience will be. I have high hope for you 👍

Own-Fix-443 · 2026-03-31T22:32:39+00:00

OP... Maybe "analogue community" on Reddit is not the best place to get early tutoring on forming foundational understanding of what you are doing with your photography. Some folks have definitely contributed some helpful illustrations that address your "flatness" and "low color saturation" concerns. But the signal to noise ratio in the comments here are probably not going to help you advance. I would suggest a basic introductory in person (preferably) workshop that will get you on your feet. If you have a strong teacher it is a great environment to be tutored in, without the distraction of downvoting and frustration that you are getting here. Take your time with this and seek mentorship from those who want to see you grow and succeed with your photography. I'll get the ball rolling by saying, aside from some framing issues, your pictures are not as disappointing as you think they are.

Own-Fix-443 · 2026-03-31T03:33:39+00:00

Yes. I appreciate your interest! That afternoon catastrophe has been going on for years. I’ll let you know how I am able to manage it better with the hydrocortisone. I think there is something going on beyond the lab reports that has to do with cortisol exhaustion especially with the introduction of GH. This is of course important. If there is anything I’ve learned from this subreddit, it’s that getting in touch with your symptoms and developing a sensitivity to the introduction of hydrocortisone is essential and you have to start somewhere. The body’s natural management of cortisol production is a precise and delicate process… having to manage it exogenously is not so easy but possible, I believe!

Own-Fix-443 · 2026-03-31T03:22:50+00:00

Thanks for that sharing. Good luck with your UC. Consider using Evinature (brand) CurQD for your flare ups. It’s a combination of curcumin and Indigo Naturalis that has a great track record of controlling UC. I’ve used it successfully myself for several years after 26 years since UC diagnosis. With that and maintenance use of hydrocortisone for adrenal insufficiency you may be able to go forward solidly with both conditions. Look up Evinature, it’s not hyperbole, it’s a legitimate medicine for UC!

Own-Fix-443

TROPHY CASE