currently waiting on my test results
24 hour urine test
11 pm x3
and blood tests
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Monika (Mokitsa), Undiagnosed Bio
October 7, 2025
Undiagnosed 24-hour urinary free cortisol, Blood test, test, UFC, undiagnosed 2 Comments
Denise H (deekay), Pituitary Bio
October 4, 2025
Pituitary, Pituitary Surgery, Treatments Blood test, Cushing's disease, emotional symptoms, muscle ache, painful joints, pituitary, surgery, tumor, weight 1 Comment
I am a 45 yr old female
I was dignosed with Cushing’s in April 2013 i had surgery in June 2013 to remove a tumor on my pituitary gland.
I have had some ups and downs with joint and muscle pains and emotional issues.After my 8 week check up they decreased my meds down but my levels were not normal at that time yet. I just recently had my blood checked again and my levels were really high in the normal range so they advised me that I could stop taking my meds all together which they say is a great thing.
I had been having some of the same issues and symptoms as when i first went to doctor that started coming up this is why i asked for blood test in first place and they are stating with meds and my own levels i am once again overproducing makes sense. However i am not feeling well at all severe muscle pains in knees and feel like i need a crane to get out of bed from being so stiff everyday.
I feel like i am once again an emotional wreck and have issues and nobobdy seem to understand this terrible disease and what it does to your body and one’s self. I have been married 23 yrs and have 2 beautiful daughters.
I gained over 45 pounds with all this I am down about 20 so far still have a ways to go for sure.
I really need some support with dealing with all this they say about 6-18 months to truly recover from this and feel so alone sometimes.
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Mallissa F, Undiagnosed Bio
September 25, 2025
Golden Oldies, Pituitary 24-hour urinary free cortisol, back pain, Blood test, bruising, cortisol, depression, dexamethasone suppression test, discharge, fatigue, Golden Oldie, miscarriage, prolactin, UFC Leave a comment
A Golden Oldie
Hi all:)
I am in a pickle, and i feel its time to take my head out of the sand and get this Cortisol thing sorted. So here goes.. My son is 7 – i breastfed for 2 weeks as only a tiny drop would come out and we just could not get it to work…. But 7 years on i still have white/milk like discharge from right breast, and clear from left. Mainly right breast. I informed my doctor for the last 7 years everytime i went that it was odd it was still coming out- and that i was literally tired ALL the time. I was also depressed – so i was put on medication for this, and each time i mentioned this, it was always put down to depression. Or how is your diet? etc. I grew tired of this old answer because life was good- i had nothing to be depressed about- and my lifestyle and eating habits are really good.
So the doctor ordered several blood test, a full looking over. And scan for my breasts- which were normal. But the blood test came back with high cortisol.
I do bruise easily yes, lower back pain, sever fatigue- but the doctor said bec i didnt not have the swelling etc it could not be cushings.
Next test was 24 hour urine collection and dex suppression (not sure if thats spelt right) test.
Still cortisol came back high. but prolactin was not high?
My doctor then refered me to a endo – which gave me an appointment almost 9 months away- (major shortage in endos where i lived- and i was not considered a risk)
IN this time i seperated from my partner and just got stuck into work- put my head in the sand and when i wasnt working or looking after my son i slept. Not normal.
I went back to the doctor again finally a year later – ready to sort this out- breast scan again- still fine. Blood test- cortisol still high, little higher than last two tests she said, but not alarmingly high.
I cant take any contraceptive pill etc as they make me crazy. Something is up with my hormones. I had a miscarrige 2 months ago, followed with severe abdo pain- for a month and a half. I am not one to make a fuss and very high pain tolerence so no ultra sound was given at first just antibiotics and assumption it would cure it.
I lived with it for one more month- then went to doctor again- scan done- ovary bleeding and other in wrong place- shrugged off and told come back in 8 weeks to see if on going problem.
Arhhhh
And now i have to get back into Endo and be placed in another waiting list to be seen. Because i am 28 – i think they do not see me as a person who needs help the quickest. Its just i dont carry on about my symptoms and moan- i get on with it, i have to, i am a mum- i am so frustrated now tho- something is not right.
Any advice. I dont know- any reassurance or explanation – help anything would be appreciated greatly.
I feel like i am some kind of person to the doctor who is one of those ones who is looking for an illness. But i am looking for an answer to my symptoms.
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Voices from the Past: Leah (Lele), Undiagnosed Bio
August 22, 2025
Thyroid, Undiagnosed antidepressant, arthritis, Blood test, breathing difficulties, bruising, Buffalo hump, Conditions and Diseases, cushing, Cushing Syndrome, cyclical Cushing's, depression, dexamethasone suppression test, Diagnosis, ECG, fatigue, Fibromyalgia, Health, high blood pressure, high resting heart beat, hypothyroidism, Latex Sensitivity, low iron, Lupus, moonface, night sweats, nodule, pain, pins and needles, Rheumatoid Arthritis, self esteem, stomach, Stretch marks, striae, supplements, sweating, thyroid, thyroxine, ultrasound, weight, X-rays 4 Comments
I am a 34 year old woman, not yet diagnosed, but suspect Cushing’s.
When I came across this website, it was like other people writing my life story.
I was diagnosed with hypothyroidism 15 years ago, with depression about the same time. Once on thyroxine, I improved.
About 8 years ago, I started gaining weight, especially around the stomach. Then as time passed, other symptoms appeared. The depression was coming back worse than ever, despite increased doses of anti-depressants. I suffered with extreme fatigue, joint and muscle pain, shortness of breath and rapid heart rate.
I had tests for Rheumatoid Arthritis, Lupus, Fibromyalgia, Latex sensitivity, ECG and echocardigram, stress echocardiogram, chest X-ray, lots of blood tests. The only thing abnormal was low iron. I tried iron supplements, which do not agree with my stomach, so had to abandon.
Since then, I have pretty much struggled with further symptoms, the latest being the red stretch marks, the buffalo hump, fat on my shoulders (makes it hard to carry shoulder bags – they just slip off!), red, hot, puffy face, excess sweating, even in cooler weather, night sweats, pins and needles in arms, cramps in legs, high blood pressure, bruise easily, sores slow to heal – and that’s just the physical symptoms.
I am so depressed and low on self-confidence that hardly go out anymore, don’t have many friends, and had to stop working as nurse, which is the job I love.
I finally got my local doctor to send me to an endocrinologist in March this year. She did an ultrasound of my thyroid (showed a tiny nodule) and ordered a 1mg dex supression test. When the dex test came back negative and I went back to see her, I just cried my eyes out. She referred me to see a psychiatrist, and said she was done with me. The usual – you can’t have Cushing’s, its too rare. No urine tests, nothing.
I called the Pituitary Foundation in my state who are really helpful, and gave me loads of information. The lady mentioned cyclical Cushing’s. But they can’t tell you which doctor who can help you, it is different in Australia because you need to be referred by your local doctor, and they have no idea who can diagnose Cushing’s or what tests to order. So now I have really lost hope of getting a diagnosis, it like fighting everyone all the time, just to be taken seriously.
There are days when I have no fight left in me, and wonder how bad it is going to get, will I get diabetes, heart disease?
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Voices from the Past: Jessica, Undiagnosed Bio
July 30, 2025
Undiagnosed ACTH, adrenal fatigue, Adrenocorticotropic hormone, blood, Blood pressure, Blood test, bruising, cortisol, Cushing Disease, Cushing Syndrome, depression, dexamethasone suppression test, dry skin, exhaustion, Health, inflammation, insomnia, Magnetic resonance imaging, MRI, pain, strength, stress, stress fracture, Sweden, urine, urine test, weight, Weight loss 1 Comment
First of all – I have to excuse my language – I’m Swedish, and will not always be able to find the right words.
After several years of increasing symtoms some of which worsened severely a couple of months ago, I finally found “Cushings disease” and recognised most of the symtoms. I’ve suffered from severe depression and thereafter adrenal burnout, and have explained most of my problems from this point of view. It’s “only” stress related, I’ve thought to myself.
I’ve always been slender, but gained weight using antidepressives. After ending SSRI I managed to loose weight again (I love running, and exercised a lot!) But my face stayed round and my belly stayed big. (Today BMI 21 and look 7 months pregnant)
I’m very easily bruised since several years.
I wake up several times each night and it’s often very hard for my to fall asleep again.
I get easily exhausted, mentally and physically. I’ve got lowered simultan capacity, am sensitive to impressions (sounds and vision)
My skin is very dry and thin and looks like paper on the back of my hands and on my lower legs.
My cheeks are always red, as well as the front of my neck.
I’ve always had extremely low blood pressure, and now it was high (in the lower region)
Inflammations won’t heal. I’ve had stressfractures in my left foot twice the last couple of years.
My legs always hurt.
The last two months my strength has decreased a lot!
I’m always thirsty and pee a lot.
I live extremely healthy (Exercise, eat good, hardly any sugar, exercise bodyscan/meditation, minimum of alcohol – my day ends extremely early) – all in order to manage my part time job, and my two children who are in great need of me.
And now we’ve found that my cortisol is high (urine and blood), ACTH is high and I’ve been a patient for a couple of days for several bloodtests, another urinetest and dexamethasone-test. Tomorrow I’m scheduled for an MRI, and next week I’ll see a doctor to get the results.
It seems that I’ve got Cushings – and my first feeling was a sense of relief. All this suffering all these years, and I’ve always thought that I wasn’t trying hard enough. And the explanation was that something was growing in my head that they would be able to cut away. And the tumour is almost always benign.
But having read some stories on the internet I’m suddenly scared. I realize that you are in deeper need of writing if you don’t get well, but still I’m suddenly very scared.
If anyone out there is a “success” (when it comes to getting well again) please respond. I desperately need hope.
Jessica
Voices from the Past: Britney (PandaBearHobbit), Undiagnosed Bio
July 19, 2025
Other Diagnosis, PCOS, Undiagnosed 24-hour urinary free cortisol, acne, anxiety, Birth control, Blood test, brain fog, cortisol, cushing, Cushing Syndrome, Endocrinology, fatigue, Health, hirsuitism, insomnia, irregular periods, irritability, metformin, muscle weakness, PCOS, Polycystic ovary syndrome, saliva, testosterone, thirsty, UFC, urine, vegetarian 2 Comments
I’m a 25 year old who’s in the middle of being tested for Cushing’s.
I have very high anxiety, hirsutism, fatigue, muscle weakness, can’t lose weight, acne, irregular periods, very high testosterone (163, normal is below 79 for women), always thirsty & pee often, ect. My doctor referred me to an endocrinologist, and I was diagnosed with PCOS. My cortisol levels were never tested. I was put on birth control & metformin and the doctors told me that would help with everything.
After being on these medications for two years and seeing little to no improvement I started to do my own research. I went to my endocrinologist and brought up the possibility of Cushing’s. She assured me that it is too rare and I am fine. I would’ve just taken her word for it, because I figured she knew what she was talking about, but my wonderful husband pushed for us to go ahead and do the tests. I’m SO glad that he did. All of the many, many tests have come back abnormal. I’ve never had so many blood, urine, & saliva tests in my life! After months of testing, my doctor said that Cushing’s is looking more and more likely.
I struggle immensly with weight loss. My mother is a personal trainer and has always been in amazing shape. She & the rest of my family told me I wasn’t doing enough to lose weight. At one point I was working out 4 hrs EVERY DAY at the gym in addition to having a very physically demanding job. I was able to lose a couple pounds, but that was it. I eat healthy, and I’m not just saying that… I really do! haha! I’m a vegetarian, eat loads of fresh fruit & veggies, & try to keep my caloric intake to about 1500 calories a day! I recently found information that a lot of exercising can actually raise my cortisol levels, which are already high. So, I’ve taken my workouts down to brisk walking for 30-45 min. Which, after years of intense working out, is weird for me. I have never been able to lose weight on my belly and face.
I really struggle with anxiety & Irritability, and I hate it. I get anxious about everything and it drives me crazy. I compete in dog agility & get so anxious before & after I go into the ring that my pulse is over 180 & I shake (Just while I’m standing there!). I love the sport so much, though, that I’d never give it up! My dogs are my life! I want to be able to compete & be able to enjoy it more, without all the intense anxiety! I lack emotional control at times, and it tears me up. I am a very loving person, and hate putting my loved ones through that. When I lose my temper, I can’t control myself. Once I come down from it, I feel aweful & can’t believe the things I said or did. I feel like a crazy person!
I often have mental fogginess & insomnia as well. Trying to focus on something is difficult, which made college a real struggle. It’s not rare for me to go through patterns of insomnia, where I can only sleep a few hours a night.
Hoping to get officially diagnosed soon, so I can move forward with treatment. I’m so eager to get all this figured out and feel “normal” again!
~~~
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Lili, Undiagnosed Bio
May 19, 2019
Cancer, Thyroid, Undiagnosed Blood test, saliva, thyroid cancer, thyroidectomy, undiagnosed Leave a comment
58 yrs old
have every symptom
blood work 9.86
midnight saliva 0.27
urine not back yet
history: total thyroidectomy 10 yrs ago
cancer free of thyroid for 10 yrs
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Archived Interview: Rebecca D (Rebecca D), Pituitary Patient
May 14, 2019
Interview, Pituitary, Pituitary Surgery, Success Stories, Treatments 24-hour urinary free cortisol, BlogTalkRadio, Blood test, CT scan, dexamethasone suppression test, endocrinologist, hydrocortisone, interview, IPSS, MRI, Mystery Diagnosis, neurosurgeon, pituitary, podcast, weight Leave a comment
Hi Ladies and Gents, my fellow Cushies!
I am a currently mid 20s student living in Toronto, ON, CAN, with big dreams and a big heart. I have been part of this network for a while now and although I’m not always active on the site, I am always eager to spread the word, the love, the support for any of you!!! Just contact me, anytime!
As for myself, I began gaining weight and not being able to control it when I was in my late teens/early 20s.
In 2007/2008 I began trying to figure out what was going on with my current family Doctor with no success. My mother (xoxox) was the smart cookie who saw an episode of “mystery diagnosis” and said “THAT’S MY LITTLE GIRL IN A NUTSHELL!”
Ironically, my family MD at the time AND the one after that said that was a ridiculous idea and it couldn’t be that and simply DID NOT TEST ME.
Luckily, in 2009 when I moved to Toronto for my new degree, I met with a new Doctor who is an admitted “over tester”, however she did help steer me to my Endocrinologist for the diagnosis. It took nearly 2 years of testing, Dex-suppression tests, IPSS, vials of blood gone, MRI’s, CT’s, and too many jugs of 24-hour urine tests we had it narrowed to a pituitary cause but could not locate it on imagine or by approximate location (right, left, etc).
So the wait began as I was referred to my neurosurgeon and the Pituitary Clinic and their hospital until the day came and I went under!
After 6 months of excruciatingly long and painful recovery (which I know any of us who have gone, are going through, or are awaiting to go through where they mess with our signalling organs can understand) I was finally feeling back to myself, my cortisol was in its normal range after tapering off of oral hydrocortisone (oh the irony) and have been feeling pretty great since, Some weight has come off, my stripes have faded (don’t worry, if you look hard enough you can still see them) and I hope to stay on a positive road of recovery! *knock on wood*
I must say, I never expected to the one in a million… and it wasn’t the “one in a million” I expected to be… You can’t change the past but you can make the best of your future. I’m proud to be a Cushie, I’m grateful to have you all as my “family”, and you are all “one in a million” as well 🙂
Be Proud, Be Strong, Be Fierce… but most importantly, Be Happy
Stay Beautiful xoxox
Listen at http://www.blogtalkradio.com/cushingshelp/2014/05/14/rebecca-d-rebecca-d-pituitary-patient
Archives are available at this same link after the interview and in the Cushie Podcast at http://itunes.apple.com/podcast/cushingshelp-cushie-chats/id350591438
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Raquel O (Raquel8a) Adrenal Bio
September 9, 2016
Adrenal, Diabetes, Other Diagnosis adrenal gland, Blood test, depressed, diabetes, menopause, suicidal, tired, urine test, weight 2 Comments
I’m not sure how long I’ve had Cushing’s. I think it’s been a slow progression for about 20 years.
In April my father passed away and we were on our way to Church for his mass. We got smashed from behind turning into the Church’s driveway, we ended up in an ambulance. At the hospital they did a full body CT scan. (I would have never gotten one if the accident never happened.) They found a growth on my adrenal gland. That started the ball rolling. I believe my father was responsible for helping me discover the problem.
I started looking on the internet about adrenal tumors. It talked about Cushing’s. Each and every symptom they described I had. It explained soooooo much. I thought I was going through early menopause. I was suicidal, and severly depressed, on 2 different medications to help. I chalked everything up to being “fat”. I didn’t go to the doctor because I didn’t want to hear “you just need to lose some weight.”
I went to an endocrinologist, she started me on the first urine test and some blood work. Two weeks later, I went back to get the results. I told her about Cushing’s and that I had all the symptoms. She said the results were abnormal but it could be a number of different things. She wanted to repeat the urine test and said that I SEEMED to be convinced that it was Cushing’s Disease. Needless to say I felt pretty stupid. When the results came back guess what?
After the accident the tumor seemed to have gotten aggravated. I was having a lot more confusion, loss of focus, etc. I chalked it all up to the accident, maybe it was a concussion. Since then it’s become worse. I get frustrated and depressed because I’m experiencing a lot more forgetfulness, and confusion. My depression meds are holding me up but barely. I’m tired all the time. My husband sometimes, I feel, doesn’t believe me and gets frustrated. My kids are always asking me if I’m okay (and usually the answer is no). I don’t want them to grow up remembering how I was always so sick and tired.
My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!
My next step is to get the tumor removed. The neurosurgeon is busy and my tumor is not life threatening so I had to wait a long time (couple of weeks) for a consultation. I finally saw him an now I’m waiting for the ENT to get back from vacation to set a date. So, I’m in limbo. Not helping!
After the surgery am I supposed to be “normal?” I’m afraid of “normal.” I don’t know what it’s like to be “normal.” Will I be a different person? Will I no longer be fat? Will I get rid of the hypertension, and diabetes? the redness everyone thinks is sunburn? will I be able to get into a standing position from the floor? I’m very FRIGHTENED of the “normal” that I’m supposed to become.
The surgery, no problem, my dad’s watching over me. I’m convinced he’s responsible for finding the tumor and will help me through.
Thanks for taking the time to read this, although this bio only scratches the surface.
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Tess, Undiagnosed Bio
May 10, 2015
Diabetes, Other Diagnosis, Undiagnosed 24-hour urinary free cortisol, Blood test, Buffalo hump, diabetes, fertility, headaches, IVF, metformin, miscarriage, pregnant, saliva, straiae, Stretch marks, sugar, UFC, undiagnosed, Weight gain 1 Comment
Hi. I am looking for any advice I can get. I am 47 year old female. I have been very healthy my whole life. Until about 5 years ago. I tried to have a second child (first was conceived with no problems 6 years earlier) and could not get pregnant so started fertility treatments. Had fertility tests done, blood tests etc. and everything came back fine. Did multiple ivf etc but nothing worked. Had a bunch of natural pregnancies but all ended in miscarriages.
During this time I gained 40 lbs all in one year. I thought it was from the fertility medication or pregnancy weight gain. Could not lose the weight no matter how hard I tried. I have been thin my whole life until now.
Thought I had a sugar issue so begged my dr. to send me for sugar test for 2 years. He would not because he said I have a normal fasting sugar level. I finally went to see an endo on my own. She tested me and said I have full blown diabetes. Again still have a normal fasting blood sugar level. She mentioned cushiness at the time and sent me home with a 24 hour urine test. That came back normal. I take metformin for the diabetes and have lost a little weight but not in the mid section. My arms and legs are getting thinner only.
I went to a new endo recently and she send me home with a saliva test for 4 days. I am in the process of taking this now. She said a 24 hour urine test is not a good test, the saliva is better. I have a bunch of symptoms that won’t seem to go away but don’t know if they could be from diabetes. When I get up in the morning it is very hard to walk. My legs are so stiff and it is painful. I have a really bad pain on the top of my right foot at the base of my second toe. Sometimes the toe actually swells almost like a ring around the toe. I have the buffalo hump. My husband has actually been telling me I have one for a few years, we just thought it was because I gained weight. I also have a full feeling in my head on one side. Almost like there is fluid there. The ear on that side feels clogged all the time. I also get headaches and when I do it is always on that side, above the ear.
I know I should wait for the test but I am so freaked out, so scared it could be a tumor and also afraid if it is not cushiness we then have no answer. I am so sick of complaining and listening to my own story and I feel like a hypochondriac. I also feel like if I have lost some weight maybe it can be something else.
Is there something else that can cause the buffalo hump? I have no stretch marks at all and no redness in the face. My face is also much less round since I lost the weight. No acne, no extra hair growth. As a matter of fact I think I have lost some body hair. I noticed recently I no longer have hair on my arms.
Can someone please let me know what they think?
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