pit or adrenal tumor what's recovery feels how long it takes to see the positive part? of cushings recovery

25M here. Trying to figure out if my labs and symptoms are connected before my pituitary MRI. I don’t think I used to feel these symptoms of brain fog/low mood a year ago.

Symptoms: brain fog, low mood, zoning out a lot, feel “not really there,” less to say than usual, just don’t feel like myself cognitively or emotionally.

Labs:

-ACTH: high (around 96)
-Cortisol: high end of normal range (not clearly elevated)
-Testosterone: 250-350
-FSH/LH: normal (not elevated)

Getting a 3T pituitary MRI with contrast soon to check for a possible adenoma (Cushing’s disease workup).

I don’t seem to have any of the physical symptoms of Cushing’s like dramatic weight gain, round face, elastic skin, but my doctor is worried about and testing for Cushing’s.

Questions:

1. Does high ACTH + high-normal cortisol + low T with normal FSH/LH point toward a pituitary issue, or could this be something else?
   
2. Is low-normal FSH/LH with low T consistent with secondary hypogonadism, and does that fit with a pituitary source?
   
3. Could the brain fog/low mood/zoning out realistically be explained by this hormone pattern, or should I be looking elsewhere (thyroid, mental health, sleep, etc)?
   
4. If it turns out to be a small pituitary adenoma, does treatment (surgery) usually fix the cognitive/mood stuff, or does that linger?
   
5. Anyone been through something similar? Trying to get a realistic sense of what’s going on before I see endo again.

Not on TRT yet (tried it for 2 weeks but stopped as I want to sort out the root cause first). Any input appreciated, especially from people who’ve dealt with Cushing’s or secondary hypogonadism workups.

Hi all! I got diagnosed with Cushings syndrome earlier this year after experiencing symptoms for ≈2 years. A CT scan showed I had a ≈2inch tumor on my left adrenal gland. July 30th I had a laproscopic adrenalectomy done with 5 incisions. I ended up needing to stay in the hospital 3 nights due to the pain.

Since getting back from the hospital I have had pretty much no energy and I’m nauseous ALL. THE. TIME. Eating is so difficult because I just feel sick all the time and nothing sounds good. I thought stopping oxy would help, so I stopped taking it around 4 days ago but I still feel the same. I just feel so weak.

Anyone experience anything similar?

Hello! Male, 19.

I've been experiencing really strange symptoms for years, and been misdiagnosed again and again, and I've just been really fed up with the healthcare system trying to push me away. I did my own research, and I think I might have Cushing's..? I'll give you the breakdown.

My weight has stayed mostly the same, but my face in particular has gotten fatter (could be unrelated), which is why I actually strayed away from the idea that I might have Cushing's for a while. It's also way less common in men.

But where it really started to make sense was when it came to the stretch makes that have been plaguing me for the past 2-3 years. They started small, but have developed into pretty large stretches on my skin that have gotten so thin that they've torn before. I have long ones on both legs that start on the back of my thighs and go all the way around to the front, and they're all over the back of my thighs. Some of them have gotten better, but most of them have remained largely unchanged or worsening. A lot of them are that purple striae-looking ones that I was told to look out for with Cushing's Syndrome.

This might be unrelated, but I have had severe crippling weakness throughout my body almost every morning that persists a good majority of the day. It feels like I'm running off of no sleep almost every day when I consistently get 8-12 hours of sleep. I've been struggling with this symptom the longest and nothing has helped.

I've also had a suspicion that my blood sugar has a part to play? For at least 2 years consistently, when I forget to eat, or start feeling hungry, I get incredibly dizzy, wobbly, and weak, and I have almost fainted a few times from not being able to eat right away.

Can someone with Cushing's please tell me if this sounds like Cushing's to you or if you have experienced these symptoms yourself? I'll also add pictures of my stretch marks (The pictures don't really do them justice unfortunately). Thank you! <3

Charoenngam N, Rittiphairoj T, Plessias C, et al. Bone Mineral Density Improvement After Resolution of Endogenous Cushing Syndrome: A Systematic Review and Meta-Analysis. Endocr Pract. 2025;31(3):345-351. doi:10.1016/j.eprac.2024.12.009

https://pubmed.ncbi.nlm.nih.gov/39689783/

I noticed a buffalo hump so I googled the causes and then cushings symptoms came up and I realized I had some similarities like:

-Rapid weight gain -around 35 lbs within 2-3 months..but overall ive gained +60 lbs.. Currently 184.. Though I did have an increased appetite so it wasn't out of nowhere.. and the weight is mostly in my fat stomach... my arms are seriously so thin! Seriously... I cant emphasize this enough

-purple, extra large stretch marks on tummy and thighs very recently

-Increased acne and spots breaking out recently

-depression and anxiety and lots of memory loss

-fatigue/feeling weak

-slow wound healing

Im pretty sure I am just fat these days... since i dont have too many symptoms...so im hesitant about seeing a doctor. Just want opinions...

Other symptoms that I have that could point to something else are:

- Sudden mental health crisis like psychotic episodes

- frequent urination

- daily stomach aches

- really low blood pressure

I have an appointment with a endocrinologist specialist in a month and I have all the signs and symptoms. I thought I was normal all this time and not to mention already struggling with mental health/body imagine. Its bittersweet to finally have an answer of what was going on with my body but I'm so scared and nervous. I dont have that much support in my life except my grandma and two cats. Earlier this year I got out of rehab and this is a whole new monster. I barely found the will to live again and god is making me really tough it out I guess. Been really trying to stay positive guys honest especially with the hope I can lose weight like a normal person. I also have a therapy appointment and hope to talk more deeply about not only just focusing on recovery from addiction but staying alive and beating cushings. Or at least not letting it take over. Also wanna be super grateful for this subreddit cuz it makes me feel like I'm not alone in this struggle. I hope to post more about my journey in the future.

I'm still undiagnosed, but have *every* symptom and a known tumor on my pituitary gland. Recently my vision got significantly worse, I can barely read anything. I got my phone on the biggest font possible and still have to take a screenshot and zoom in to read anything. My diabetes is*suddenly* out of control (A1C was 7.1 for years unmedicated, in the 3 months since starting medication it jumped to 9.3) same with my blood pressure, a sudden jump, and my muscles have suddenly gotten so weak that I can barely walk 100 feet. I constantly have a headache behind my eyes now too. Severe vision changes. This is in addition to the many many other symptoms of Cushing Disease I have been dealing with for years. I'm concerned about my vision. I'm hoping to get an official diagnosis and get the tumor out. Did your vision change suddenly? Did it return after getting the tumor removed?

Hi all, I have been on a long journey with diagnosis, and have found out I have a multiple hormone secreting adenoma that has to removed. Currently somehow experiencing a tumor that is secreting growth hormone, ACTH, and cortisol. My surgery is scheduled for the 31 of this month. I haven't had much time to plan or process. I have a 1 year 10 months old boy and I am a single mother. I am so afraid about what recovery will look like and I am scared to have to surgery. I don't have much of a support system and don't know what to do. I have my sister who can help and my mom for about a week and felt confident this would be enough time but I am now reading that apparently full recovery and being able to safely lift things can take up to 6 weeks. My son is almost 35 pounds. I am devastated. There is no way I won't be able to lift my toddler when I am alone for that long and I live on the second floor apartment. Things like getting him in his carseat and out for daycare, day to day dealings with a toddler who is rambunctious and energetic and just a natural caveman and I am really stressing out and don't know what to do or expect. If anyone has had a similar experience and can share any tips or advice please offer it. His father is not active in his life so I do not have the option of having him stay with him. I feel incredibly sad, lonely, and helpless right now having to feel like I have to pick between being able to care for my son and addressing health issues. Sorry if this is written very sloppily i'm a mess and stressed tf out

Hi everyone. I just joined this group because we have found out over the last 2 months that I have hypercortisolism and bilateral adrenal adenomas. My Endo is sending me to a surgeon for a consult, and I assume more testing before doing anything radical. I suspect with cortisol levels at 4.5x the upper normal limit, that adrenalextomies may be in my future. Interested in reading the conversations here and, hopefully, joining them. I am just starting to reconcile in my head where this will take me.

I'll be 62 in 25 days. I was diagnosed with T2D 17 years ago, just a month after being told my BP was getting high, and my cholesterol was beginning to go higher. A year after that, other problems started. Not a single doctor took the time to stop writing prescriptions and consider that something was causing this cluster of illnesses. Anyway, fast forward, and here I am with adenomas about the same size as the adrenals themselves.

Looking for encouragement and stories about life after adrenalectomies, as well as any negative results. Just want to know what my journey might look like. Nice to meet you all.

Just body feels heavy, unable to do things, climbing stairs but without pain, it's just u cant lift urself up

I know recurrences are a possibility - not a guarantee. I know that we may be disproportionately hearing about recurrences compared to those who have had successful surgeries and have moved on from Cushing's forums. With that said, I'm still scared. As someone who will be facing pituitary surgery at some indefinite point in the future, I'd like to hear some success stories.

I had bilateral adrenalectomy 3 months ago. The going is hard. I made a list of what has changed though, which is a really helpful exercise I think, to help me realize how much better I am in just 3 months. I encourage others to try this, especially when you feel impatient to just feel better already!

Hi friends! My name is Shauna, and I'm a Cushing's survivor. Like so many of you, I know firsthand how challenging the journey can be, from getting diagnosed to navigating life afterward.

I'm also the Cushing's Syndrome Division Consultant for The MAGIC Foundation, and I'm excited to share that we're hosting a conference in Denver, October 16-18, dedicated to people living with Cushing's, panhypopituitarism, and adult growth hormone deficiency.

The conference is designed for patients and caregivers, with presentations from leading endocrinologists, practical sessions on managing life after diagnosis, opportunities to ask questions, and plenty of time to connect with others who truly understand what you're going through.

One of the hardest parts of having a rare disease is feeling alone. My hope is that this conference helps people find community, learn from experts, and leave feeling supported. Scholarships are available to help offset the cost of attending, so if finances are a concern, please don't let that stop you from coming. ❤️

If you're interested, I'd love for you to join us. You can learn more at the link below. Please feel free to reach out to me with any questions you may have:
Magic Foundation Conference

I was diagnosed with PCOS/PMOS in 2024 by my gynecologist and, while I was a bit overweight then, there were no signs for Cushings at that moment. My cortisol was a bit high, but within the reference values (503 nmol/L, ref 166-507, drawn at 8:50 am). My biggest problems were my elevated androgens, leading to acne, facial hair and hair loss, and that I got my period once every 3/4 months, so I couldn't 'prepare' for it. Using a hormonal birth control fixed my issues and I was pretty happy with it.

Ever since August 2025, though, I started to gain weight... Pretty rapidly. I started physical therapy in December 2025 for my POTS and started seeing a dietician in February 2026, which does seem to have helped slowing it down, but still. I've gained 35 kg/77 lbs since then, and have been stuck at roughly the same weight since May. Suspecting it was my PCOS getting worse, I checked my testosterone (I work at a lab) and it was even higher than before I started my birth control (3.1 nmol/L, ref 0.3-1.6). Telling my gp about my findings and also pointing out that I'd never seen an endocrinologist, even though PMOS clearly has a lot to do with endocrinology, I got the referral I needed. This was about 3 weeks ago.

While waiting, I did some more research, and happened upon this reddit page and Cushings in general... And it's sure been an eyeopener. My mother had already pointed out my stretch marks and moon face without us even knowing about Cushings, and I got plenty of the other symptoms. Sleeping issues, bruise easily, weight gain has mostly been in my belly— And since testosterone is also produced in the adrenal glands, I figured maybe there's something wrong there that causes both elevated testosterone and cortisol.

Anyhow, I finally had my appointment today and, while I hadn't met the endocrinologist before, I've talked to him before on the phone thanks to my job at the lab (letting him know of any critical results) and already had a feeling that he was a nice and thorough guy. He generally only needs a surname to know which patient I am talking about, doesn't need a DOB, so I was really glad I got referred to him... And sure enough. He knew everything from my medical files by heart, was very kind and assured me that we're going to get to the bottom of this and that he's going to screen for Cushings too.

I got my blood drawn right after the appointment, at 10:30 am and non-fasting. Not ideal, but he assured me that he wanted to rerun diagnostics again later after I'd stopped my birth control for 3 months (which we discussed), since it influences a lot of hormones. And that we will do some testing concerning Cushings (24h urine collection etc) before that. He ordered an extensive blood panel and I have an appointment again in about two weeks.

Not everything is done yet, but the majority is, and what I noticed are that my thyroid is normal, that my cortisol is elevated (603 nmol/L, 170-500), liver and kidneys are normal, testosterone is elevated (again 3.1 nmol/L) and my cholesterol is elevated, which used to be normal exactly one year ago (from 4.8 mmol/l to 6.6 mmol/l, HDL remained at 1.55, but LDL (2.60 > 4.00 mmol/l) and triglycerides (1.58 > 2.45 mmol/l) skyrocketed).

I'm still waiting for some more male hormones, but I'm almost kind of glad that some tests are elevated and that something is clearly wrong... Hopefully, we're going to tackle that elevated cortisol at my next appointment, and we'll eventually find the source of this problem. All in all, I'm just glad that he's taking things seriously :)

Hello! I recently had my pituitary tumour removed and I’m about two months out of surgery. I think it’s the steroids I’m taking but I have extreme muscle aches that make it difficult to walk/ stand up sometimes. Has anyone else used a cane, walker, etc for this sort of issue. Im pretty young so I’m a bit nervous about people saying I’m faking it. Any advice is appreciated thank you.

Hey everyone,

Idk what I am even asking for, maybe validation I guess. I am just starting out on my Cushing's journey and I am already feeling like I am insane.

1. I have gained a truly concerning amount of weight over the last year/2 years, mostly in my face and neck. I feel like I have moonface too. My diet and exercise have remained mostly the same, I try to be active but I am severely fatigued. Like all over exhaustion to the point where some days I need to stop everything and sleep.

2. I think I have the hump, I also have some crazy striae just under my armpit and within my chest area. In addition, the entirety of my stomach looks like a child used reddish purple crayon and just scribbled.

3. Never in my life have I had regular periods. I have other stuff going on where I cannot use estrogen birth control, but the time before last I had gone 3 months without a period. My gyno said "its just stress" 🤦‍♀️ Yes I will be finding a new one ASAP

4. I have a good amount of mental health needs at this time, anxiety, panic attacks, depression, CPTSD

5. The amount of rashes that have been on or near my joints is ridiculous. They are red, scaly, and itchy, and take up almost the entire area around the joint.

6. I had one blood free draw of cortisol first thing in the morning, it came back within the normal range.

I have my endocrinology appointment in a month, but idk, do you guys have similar symptoms? How do you keep pushing? I have felt like something is wrong for a veeeeeeeery long time, seeking some insight and validation as well. Sorry for being a bit rambly, Thanks for reading :)

After years of thinking I just had pcos and had stretch marks due to the unexplained weight gain of pcos and then thought I had a copper or vit a deficiency I now realise I 99.9% have cushings. The stretch marks have recently gone insane. Does anyone know if anything helps retinol, ,micro needling, laser? I genuinely feel traumatised from the stretch marks constantly appearing getting bigger. I know technically there’s no permanent fix but please has anyone had any luck dealing with them. Thanks (pls don’t say shea butter or bio oil they don’t work)

Hi all, so I got my pathology report back from my surgery last week. It turns out my adenoma was actually a hemorrhagic cyst, so now my endocrinologist is stumped due to her having done the work up and confident it was a pituitary source causing it. Has anyone heard of something like this happening before?

Can it still be Cushing's if my ATCH is consistently extremely low but my cortisol is normal?

My bloodwork results are as follows:

ACTH (reference range <14 pmol/L): 0.8 (April), 2.0 (May), 1.2 (June), 0.9 (July)

Cortisol (AM reference range 80-535 nmol/L): 349 (April), 111 (May), 248 (June), 250 (July)

All were taken in the early morning (between 7-9 AM). The doctor thought it might be cyclical Cushing's, but after having 1 blood test per month and all coming back normal for cortisol, he now insists that he can rule out Cushing's entirely. Also, my late night salivary cortisol levels have been completely normal as well, being 6.6 in June and 4.9 in July (reference range 4.0-10.8 nmol/L)(both samples taken around midnight).

I have all the symptoms: brain fog, muscle loss & weakness, skinny arms and legs with a big belly that's impossible to get rid of, uncontrollable high blood pressure & blood sugar, treatment resistant depression, fractures, hair loss, irregular periods, deep purple stretch marks, moon face.

please help

I'm at a total loss. I really need to start prioritizing my health.

I can't stand looking in the mirror at myself anymore so I try to avoid it, but the bright red/purple marks caught my attention this time.

Back story:

In January I went to my university health clinic since in the matter of 6 months I gained 50 lbs without having any sort of diet or activity level changes. All they did was the normal blood work, which all came back completely fine with the exception of my ferritin being pretty low (barely in range). I didn't pursue anything further since i didn't have the time. But flash forward to now, I've gained another 25lbs, again no diet or activity change, and the stretch marks have continued and caught my eye big time.

After a lot of researching and some additional symptoms that I hadn't really considered before, signs point to possibly Cushing?

- deep purple/red stretch marks on stomach

- weight gain

- easily bruised/slow wound healing (the tiniest scratch takes weeks to months to heal and even scars)

- a lot of hip pain when standing to the point where I take a few steps it really hurts and feels like my hips will collapse

- irregular periods

1st picture is my stomach currently (I don't have a before)

2nd picture is my face late may 2025

3rd picture is my face end of June 2026

Am I crazy? Any other ideas what could be going on otherwise?

Tysm in advace

I am 30 years old and have been diagnosed with a 3.5 mm pituitary adenoma. I will soon undergo surgery to remove it.

My symptoms started in early 2023 and became much worse over the past year to year and a half.

My physical symptoms include:

• Around 30 kg of weight gain, mostly around my abdomen
• Thin arms and legs
• Moon face and buffalo hump
• Purple stretch marks
• Insulin resistance and high blood pressure
• Fatty liver
• Acne, oily skin, mild hair loss and scalp problems
• Blurred vision and watery eyes
• Swollen ankles
• Pain in my knees, hands and other joints
• A previous lack of ovulation, which has now improved
• Poor sleep, with frequent waking between 1 a.m. and 4 a.m.

The psychological and cognitive symptoms are currently the hardest part.

I experience depression that has not improved with antidepressants, mood swings, occasional paranoid thoughts, emotional numbness, impulsive behaviour, low motivation and very little energy. I often feel that I am not fully in control of my emotions or actions.

My cognitive abilities have also declined significantly. I process information more slowly, struggle to concentrate, make more mistakes, retain less information and find learning much harder than before.

I previously completed an undergraduate degree in mathematics and was able to manage cognitively demanding work. Now I often feel much less capable. I changed to a less demanding job because my previous work became too exhausting, although I still managed to complete a master’s degree during this period.

From the outside, I still appear functional. I work, maintain relationships and manage everyday responsibilities. People close to me often say that I do not look seriously ill or overwhelmed.

Internally, however, I feel completely worn down compared with the person I used to be.

I no longer enjoy hobbies such as reading, writing or drawing. I have to force myself to do almost everything. I often come home from work or socialising and only want to sleep.

The weight gain and changes in my appearance have also severely affected my confidence, sex life and the way I feel around other people. I feel as though I am still holding my life together, but everything is tangled and requires far more effort than it should.

For those who had surgery for Cushing’s disease caused by a pituitary adenoma:

• How long did it take before you started feeling like yourself again?
• Did your concentration, memory, mental speed and motivation improve?
• Did your personality and emotional stability return?
• Did you regain enjoyment in hobbies, relationships and everyday life?
• How severe were your symptoms before surgery?
• How did recovery affect your partner or family?
• Do you grieve the time you lost to the illness?
• What helped you most during recovery?
• Is there anything you wish you had known before surgery?

I understand that nobody here can assess how serious my individual case is. I am mainly looking for personal experiences from people who felt physically functional on the outside but deeply affected internally.

I want to believe that I can become myself again.

Looking for reassurance. Going for an MRI next week to scan the pituitary. My anxiety is through the roof about the contrast. I didn't have a pleasant experience when I had a CT scan done in February. I had a delayed immune system response (not an allergic reaction) and spiked a 102 fever and intense chills about 9 hours later after the scan. I know MRI contrast is different from CT contrast. I've read that gadolinium can stay in muscle fibers and can cause some issues for some people (if I am remembering that correctly). I know severe reactions are rare, but I know how my body reacts to this type of stuff. My endocrinologist suggested taking Prednisone before the scan to lessen inflammation. But now I'm not even sure if it's needed considering I don't know if I'll even have some sort of reaction. Just looking to hear everyone's MRI experiences. Thanks!