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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Voices from the Past: Lisa (sagrae), Undiagnosed Bio
July 10, 2025
PCOS, Undiagnosed ACTH, antidepressant, blood, Blood test, Conditions and Diseases, cortisol, depression, Estradial, Health, hypoglycemia, hysterectomy, LH, Lithium, ovaries, PCOS, Provera, saliva, serum cortisol, Sleep apnea, stress, surgery, T4, testosterone, tired, TSH, UFC, urinalysis, urine, Welbutrin Leave a comment
Im a mother of 4 use to work full time till I got to sick and very tired. Not sure what I have been to alot of drs. My tish flucuates my t4 is always in low range of normal, my cortisol tends to be very low in am and through the day. Ive done saliva test blood tests and urine tests. Im either boarderline or below and its been almost 2 years, 2 surgeries and alot of stress and financial hardship to my family. I had sleep apnea surgery first, then my ovaries removed (that proved the pcos i knew i had). Ive now been told I have reactive hypoglycemia. Been put on many different anti depressants to control my moods, since I never know from one minute to the next how I will be.
saliva test reference range
1.6 7.0-10.0
1.9 3.0-6.0
.9 2.0-4.0
.9 <1.5
serum cortisol tested 1 month later
.6 4.0-22.0
free testo
3 2-45
t4 tested 1 year ago
5.0 4.7-13.3
t4 tested 2 weeks ago
1.11 0.8-1.8
tsh tested 3months ago
1.94 .40-4.50
tsh tested 1 year ago
4.14 .35-4.94
my acth test
20 6-50
lh test
58 10-54.7 keep in mind ive had a total hysterectomy 6 months ago
Im wondering how a dr can figure out what is wrong with me if everything flucuates all the time, and im wondering what is wrong with me? please anybody out there please shed some light on what this could be . Theres days i really feel out of my mind. Current medications started 3 months ago lithium 900 welbutrin 150 estradial 1mg provera 5mg
Voices from the Past: Lili, Pituitary Post-Op Update
July 5, 2025
Cancer, Pituitary, Pituitary Surgery, Thyroid, Treatments, Update ACTH, Blood test, cortisol withdrawal, Dr. Van Gompel, headaches, IPSS, Mayo, nausea, pituitary, pituitary surgery, pituitary tumor, saliva, thyroid cancer, thyroidectomy, update, wean Leave a comment
hi there…
i had the pituitary surgery. They said i am cured (of course it could come back) but the day after surgery my acth level was 3.7 and the next day it was 1. They consider that a cure.
it is a very painful recovery for me and i am documenting each day.
The headaches and pressure in my head were so awful and painful but have now on day 6 subsided. They had to cut my septum to get through and i had a bone spur too so maybe that added to it…my nose was, still is i am sure, packed and i can’t blow my nose till July 12! The nausea was bad too. The cortisol withdrawal hasn’t been so horrible yet. They have me on a taper program of each week taking less.
The tumor was towards the left side and the surgeon who was Dr. Van Gompel at Mayo was aggressive in the amount of tissue he took out as he said it was soft. He wanted a “home run”. I asked after if he got the home run and he said yes.
The whole Mayo experience was strange. You don’t really get to call and speak to the doctor after you see them…you get a “desk” and a message gets sent. The endocrinologist is the only one who calls back personally but I guess that is a lot. I would highly recommend her and don’t know all her info except her name is Dr. Irina Bancos at the Mayo clinic. Things just fell into place there. As you know I was only scheduled for the IPSS but when she saw how symptomatic I was and all my levels she picked up the phone on a Tuesday and had me scheduled for surgery Friday morning. A one stop shop. I was scared and there alone but got through it.
The next 3-12 months will be difficult. I am currently on some pain meds and muscle relaxers but in touch with my sponsor daily and we decided I don’t have to be a martyr. I just need to check myself and get off them as soon as I get these headaches under control.
Mary, I’d like to stay active on your site. I’ve learned so much that helped prepare me for the doctors appointments and the procedures that I’d like to give back anything I can in the way of my experience of living with the symptoms and not knowing what was wrong with me to fighting for a diagnosis to the cure. Please let me know the best way I can do this and you may post this if you’d like. Maybe edit out the pain meds and sponsor part as I don’t think many would relate to that but who knows.
I just know I am grateful to you and this site.
Lili
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Voices from the Past: Jestina (jestina902), Pituitary Bio
July 2, 2025
Diabetes, PCOS, Pituitary, Pituitary Surgery, Treatments back pain, Blood test, Buffalo hump, CT scan, cushing, cushing's syndrome, diabetes, endocrinologist, Endocrinology, Facebook, hair, moonface, pain, PCOS, pituitary, Polycystic ovary syndrome, scoliosis, surgery, Washington, Weight gain, X-ray computed tomography, X-rays 2 Comments
Hello there! My name is Jestina and I’m 16 years old. I just recently found out that I have Cushing’s from an endocrinologist in Washington D.C. It has taken three years to find a diagnosis. I have struggled with hormone issues ever since I was thirteen and my old family doctor originally diagnosed me with diabetes and PCOS. I didn’t think that it was unusual, especially because my mom has PCOS and diabetes runs in my family. My doctor told me that I was going through treatment for PCOS by giving me a pill to take. When I would take it, I would become very sick and I had unbearable stomach pain. It got to the point where I stopped taking it because it was hurting so badly. I was also not having any results. I still had unusual hair growth and I was starting to gain weight. This went on for a year.
About a year later, I started to face horrible back pain. I have scoliosis and my family, along with my specialists believed that it was caused by my spinal fusion. I started physical therapy when I was 15. I started to develop the “buffalo hump” and my physical therapist believed that it was the cause of spending too much time online. I thought that it was very strange though because I didn’t go online very much. I didn’t even have Facebook or any other type of social networking account. So, I went through about six months of therapy and I saw a small improvement but it didn’t last very long.
When I turned 16, I started to face even worse pain than before in my upper back. I went through multiple rounds of X-rays and spent two months home from school while my specialist was trying to find what was wrong but each time, he could never think of a reason for why I would be facing so much pain. I ended up going through a round of pain injections and it eased the pain enough for me to be back in school for the remainder of the school year. On my follow-up appointment after having the injections, my specialist suggested that maybe my pain had been caused by a hormonal problem. My mom decided to change family doctors and we went into her office less than a month ago. When my new doctor reviewed the medicines that I had been taking, she then informed us that the medicine that my old doctor gave me was actually for my diabetes and that it was the reason why I hadn’t seen any results. After I described my symptoms, (buffalo hump, moon face, unusual hair growth and weight gain, etc.) she left the room for about forty minutes to research. When she returned, she suggested that I had Cushing’s and that I should see an endocrinologist. She ordered a few rounds of blood tests and gave a referral to a doctor in Washington D.C.
My endocrinologist reviewed the blood tests and agreed with my family doctor that I most likely had Cushing’s. He ordered more blood tests and a 24-hour urine collection and they came back the way that he expected. I am now awaiting a CT scan for my surgery which should happen sometime in the next few weeks. I am hoping for great results. Apparently once my surgery is finished, I shouldn’t see anymore problems with diabetes, PCOS, or the symptoms that come along with Cushing’s.
Thank you so much for reading my bio!
Voices from the Past: Kristina, Undiagnosed Bio
June 30, 2025
Hypothyroidism, Undiagnosed Blood test, cushing, cushing's syndrome, depression, dizziness, eczema, energy, Health, hypothyroidism, skin, sleep, Support Groups, surgery, weight, Weight loss Leave a comment
Hello everyone, My name is Kristina and i am 21 years old.I am so happy that i found this site because there are so little information about Cushing’s, especially real people stories. If not internet or tv i still wouldn’t know what is happening with me for a quite long time.
Hm i don’t know where to start, as a kid i always was very thin, and everything started changing when i was 11 or 12 years old i started to gain more and more weight, and after few years was diagnosed with hypothyroidism, i took medicine and lost my weight , but when i was 15 everything started changing again but much worse, i was always hyperactive, happy, enthusiastic, always got best grades and ect… i was always depressed, always asleep, feeling dizzy, everyday felt exhaustion, i even started missing schoool , didn’t even went where because i didn’t had energy to get up from bed and get dressed, and also with +66lbs i really didn’t wanted to show my face anywhere. And everyday everything get worse and worse, because of all this lack of energy and motivation i quit law studies, and then other studies, i don;t have energy to do simple house chores, my muscles always hurts, my head everyday hurts, i can’t sleep, i still get on weight every week almost, i have 800 kcal diet, and do some exercises, and weight still puts on… my hair is so ugly, my skin is very dry i got eczema that my skin doctor can’t cure, i broke my kneecap with very light impact i have many many other problems, and when i saw this on house md and mystery diagnosis i started my reseach on internet and library, i took very hard road that my endro would write prescriptions for all blood tests and MRT and now i am waiting for results and am very be anxious and have still many many questions.
I know that all cases are different but maybe someone could share, if after treatment or surgery, how hard is to loose weight, and not feel tired all the time? what to expect?
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