August 26, 2026
Undiagnosed pain, undiagnosed Leave a comment
My daughter (15) since Jan 2018 all signs from cushing!!
But Doctors still not sure !!
My child , my daughter (15) has pain allover , she needs help!!
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July 7, 2026
Diabetes, Male, Other Diagnosis, Undiagnosed cortisol, diabetes, hair loss, male, MS, Multiple sclerosis, neuropathy, pain, tired, weak, weight 4 Comments
Hi, My name is alex and i honestly have no idea what’s wrong with me.
about 5 years ago i became ill, all of a sudden went from a healthy strong active person, to feeling weak, tired, i gained weight, my hair started thinning, among other symptoms, i was diagnosed with diabetes, my sugars were in the 500’s then one day about 6 months later, my diabetes went away, no change in diet, no change in lifestyle, just up and went away…but it was replaced with excruciating pain, throughout my body mainly in my legs and arms, they said its pribably neuropathy… but i had only been diabetic for 6 months, they tested and found no neuropathy…they said it might be MS, they tested nope not MS….they said it might be fibromyalgia…i don’t have trigger points no not fibromyalgia,,,i started getting infections….gum disease…eye infections… bites and scratches on my legs which used to heal quickly no longer healed and when they did they left scars and marks on my skin….the pain was so unbearable… they tried all the neurological meds, cymbalta, lyrica, etc….. nothing helped…
finally they gave me fentanyl patches and norco and i was able to manage the pain… but still no diagnosis… i saw hemotologists, oncologist, because at one point they thought i had luekemia which i dont… i saw a rheumotologist and nothing…my pain management doctor said i had a bulging disc in my back and wanted to give me steroid injections in my spine…he said that’s whats causing the pain….but the pain was in my legs and arms a bulging disc in my lower spine would cause pain in my legs and lower back only so i disagreed with his assesment…still i got 1 injection and it didnt help… he said oh it could take up to 3 for you to feel relief i refused the injections and he stopped giving me pain meds, he said since i wasn’t cooperating he couldn’t treat me anymore… so i suffered
one day on an emergency room visit i saw a doctor and told him my symptoms… (i would tell any doctor that would listen to try to find something.. i know something is wrong with me) he said have your pcp test your cortisol levels….well my corisol levels were 5 times the normal count.. they did the test twice…and both times they showed 5 times the normal level…now i don’t have the moon face or the buffalo hump but i do have every other symptom of cushings…i went to and endocronologist who right away said… you don’t have cushings…this was over the course of the first 2 years… now 3 years after that and 5 years from the start i’m still suffering the pain i’ve gotten used too for the most part but sometimes it;’s sooo bad i have to go to ER and get morphine and dilauded to help…last week i was in the ER and they gave me 3 shots of IV morphine within two hours and it only lasted about 20 minutes..each time… finally a shot of dilaudid helped and i was able to come home and rest ….. still no difinitive diagnosis other than chronic pain…and my diabetes has come back recently…i no longer see doctors because i have never gotten help from them…i’m lost and don’t know what to do anymore…if it wasn’t for my kids.. i have 3 i don’t think i could go on…invisible illnesses are real and devestating…
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July 2, 2026
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!
July 1, 2026
Adrenal Insufficiency, Other Diagnosis, Thyroid, Undiagnosed 24-hour urinary free cortisol, adrenal fatigue, adrenal gland, brain fog, cortisol, dexamethasone suppression test, endocrinologist, energy, Epstein Barr, fainting spells, fatigue, h.pylori, hematologist, moonface, muscle ache, pain, rash, salivary, steroid cream, T3, vitamin D, weight 2 Comments
Hi. I am a 40 year old female who has been feeling “not quite right” for almost 10 years. I have been tested on and off for many different things and have been diagnosed with Epstein Barr, Adrenal fatigue, and h.pylori during these years. I continually have vitamin D deficiency issues. I have a rash on my lower legs that never really heals even with the most powerful of steroid creams.
This year, I started feeling worse than usual. I have zero energy and my brain is in a perpetual fog. My muscles and body ache, my face is round, and I have gained 40+ lbs over the years. There are days that I physically cannot get out of bed. I have fainting spells and a racing heartbeat at times. I crave carbs and salt. There is not enough water in the world to drink and I have to run to the bathroom frequently. No matter how hard I try the weight will not come off. When I get massages my therapist tells me that my adrenal glands are swollen and I feel very nauseous every time she runs her hands over that spot.
I was an avid equestrian- 3 day eventer. I was riding and showing no less than 3 times a week. I was getting fit. Now I am just a useless blob that can’t do anything. I have been pushing to go to the barn to just groom and be with my horse as much as I can.
My doctor found that I have an unusually high blood cell count a couple of months ago. I was sent to a hematologist to find out why. We did so many tests I quit counting. The conclusion was that I am not sick enough to be sick. So many tests were coming back normal or high normal. No lupus, no leukemia, no answers. I finally asked about Cushing’s because I have a majority of the symptoms listed. My doctor was skeptical, but agreed to let me do a 24 hour urine test. It came back high. This has allowed me to move to an endocrinologist. I also have high levels of reverse T3.
So far I feel like a complete lab rat. I have now done 2 salivary Cortisol tests and have another urine test this week. One of the 2 saliva tests came back very high. My doctor said we have to do yet another saliva test to test the last results. After all of this we will do a dex suppression test.
At this point I am very depressed that I am unable to live my life. Riding is not an option because I just get “floppy” and risk falling off. I was studying to get my vet tech license, but the brain fog prevents me from remembering anything I read.
I am so lucky to have a doctor that believes my symptoms are real. She does not gloss over the fact that it may take a long to diagnose what is going on, but she wants answers as much as I do. For now, I am just a good lab rat.
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July 1, 2026
Undiagnosed aches, acne, anxiety, depression, irregular periods, moonface, pain, weight 4 Comments
Hi there!
Basically writing my story on here just for support.
I have suffered from major depression, no periods for two years, irregular hair growth, moon face, aches and pains especially lower back and also severe acne. My face is so swollen I no longer smile. I feel like I am losing my mind.
I recently had a late-night cortisol test and it came back double what it should be. My acth is very low but my cortisol is high. I suffer from aniexty and have recently started having aniexty attacks.
I feel like the doctors could care less and actually have one laugh at me. I used to be a happy 115lb 18 year old girl and have gained 25 pounds in less than a year although I have continued eating as healthy as I can even thought I am hungry all the time but I workout daily.
Any advice would be amazing. I don’t know what else to do.
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June 30, 2026
Adrenal, Adrenal Surgery, Cancer, Golden Oldies, Other Diagnosis, Treatments 24-hour urinary free cortisol, Adrenalectomy, Blood pressure, Blood test, breast cancer, breast reduction, cortisol, CT scan, dexamethasone suppression test, diarrhea, fatigue, fibroids, hysterectomy, mastectomy, Multinodular adrenal hyperplasia, nausea, pain, periods, Prednisone, Premature Ovarian Failure, UFC, weight, X-rays Leave a comment
A Golden Oldie
~~~
Hi! My name is Robyn and I am a 48 year old wife, mother, daughter, sister, aunt, 1st grade teacher and a recovering Cushing’s patient.
My story is so very similiar to the others on this site but because they helped me so tremendously, I felt that I needed to add my own. Until I was 40 I was extremely healthy and extremeley thin (92-100lbs. on a 5ft. frame) My menstrual cycle had been like clockwork. I had normal periods every 26 days. I had had no problem getting pregnant and was the proud mother of a daughter and a son. I had never had PMS or pain with my periods.
This all changed around 40. My periods started becoming very irregular, I had severe cramps, crazy PMS (my husband said it was like Linda Blair with her head spinning around), and heavy bleeding. I was diagnosed with fibroid tumors. Dealt with that with hormones but by the time I was 45 I had Premature Ovarian Failure and the pain had become incredible and the bleeding was almost to the hemorraging point.
I had a hysterectomy in July of 2007 (I was 45). One month later in August of 2007) I was getting out of my bathtub, slipped and fell and broke my acetabulum (hip socket). I spent 14 weeks non-weight bearing in bed and walking to the bathroom with a walker and in horrible pain until it was decided that I would have to have a total hip replacement. It was another 9 months before I recovered from that. By that time my weight had steadily increased. I thought it was due menopause that I had gone through as a result of the hysterectomy and not being able to walk much less exercise in the last year and a half.
In December of 2008 I decided to have a tummy tuck and a breast reduction because of the weight gain. In January of 2009, when I went for my post op appointment with my plastic surgeon, I was told that breast cancer had been found in the tissue removed in the reduction.
In March of 2009, I had a mastectomy. At that time, the plastic surgeon started my reconstruction by putting in a tissue expander. I had poor healing and all the incisions opened so I had the expander removed. Since then my weight has increased dramatically. I got the moon face, the red chest and neck, the buffalo hump and stomach that looks like you are 9 months pregnant.
During this time my primary care physician just left her practice with no forwarding address. I waited for several months to see if she would resurface in another practice and when she didn’t I had my oncologist recommend another internist. I saw her in Feb. 2010. She asked me what my biggest complaint would be and I told her it would be my weight gain in my stomach and how my face and neck looked.
My mother has Multinodular adrenal hyperplasia and I told my doctor that my mother thought I had Cushings. She told me she thought my mother was right. She did blood tests and called me to tell me that my cortisol levels were sky high and that she was referring me to an endocrinologist. She also had me do a 24 hour urine test and a 1mg. dexamethasone suppression test. Both were indicative of Cushings. The first time I saw Dr. Rolbands he looked at me and said I was a classic Cushings case and sent me for a CT scan. I had the scan and I had a tumor in my left adrenal gland. I went swiftly down hill with symptoms. The leg pain and fatigue became overwhelming.
By the time I had my surgery, I could hardly walk across the room and my blood pressure was 168/110 taking 2 blood pressure medications. I had my left adrenal gland taken out on June 29th, 2010. I am now recovering. Dr. Rolband is very pleased with my progress in 2 weeks. My blood pressure was 90/70 and took me off one medication. I have lost 6.1 lbs. and the pain in my legs had gone away. All very positive. I started weaning from the prednisone and that has not been pleasant. I went from 10 mg. to 7.5 yesterday and I had diarrhea, nausea, body aches and pains. I’m better than I was before the surgery but I’m ready to feel “normal” again.
Contact Robyn
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June 28, 2026
In Memory, Pituitary, Pituitary Surgery, Treatments acne, blood clot, Blood pressure, cortisol, Cushing's disease, fatigue, hair, In Memory, pain, pituitary, Stretch marks, Weight gain Leave a comment
We lost another Cushie sister today. Kalyn Allen’s husband posted this on Facebook:
This afternoon my beautiful wife and mother of my children completed her path in this life so that she may be reborn again into the next. She was surrounded by her children, family, and friends when she transitioned very peacefully. She now is free to be reborn again and continue the cycle of life to hope one day to reach nirvana. While we will morn her passing our attachments to this world of suffering and rebirth are what bring us back over and over. So let us not mourn a loss today but say good luck in the next. For we are full of desire for this world and we will surely meet again.
Yesterday he posted:
Kalyn is in critical condition in the CV-ICU at St. John’s in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go. Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and I are having to make daily trips into tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.
Kalyn’s story from https://www.youcaring.com/kalynallen-786017:
My name is Kalyn I am 41 years old. I am married and have three children. In Nov ‘16 I was diagnosed with Cushing’s Disease.
My journey began in June ‘16 when I attended a health screening provided by my employer. It was discovered that my blood pressure was dangerously high and I was sent to my physician. I was prescribed blood pressure medicine. A couple of weeks later I joined a wellness program to turn around my exercise and eating habits in hopes that it would help me lose weight and lower my blood pressure.
Over the next few months I was seen by my physician numerous times. I was beginning to have strange symptoms. I was easily bruising. Dark purple stretch marks started to appear out of nowhere. I had hair loss on my head but excessive hair growth on my face. My ankles and hands swelled along with a loss of muscle mass in my legs, horrible acne and a shortness of breath. While my physician tried several different medications they were not alleviating my symptoms. At this point I was having trouble getting in and out of my car and the shower. I also started seeing a therapist because the excess hormones in my system were causing uncontrollable mood swings. During this time I was exercising and following the wellness program losing 52 pounds from June until the end of Oct. But there were still issues controlling my blood pressure. It was at this point that my physician referred me to an endocrinologist.
The endocrinologist ordered a multitude of tests to measure my cortisol levels as Cushing’s disease was suspected. To be thorough an MRI was ordered of my brain to see if they could find a tumor on my pituitary gland. This was done at the end of Dec. It was discovered that I had a 3.7 millimeter tumor on my pituitary gland. From there I was referred to a brain surgeon.
My condition continues to deteriorate as I am experiencing extreme fatigue, intense muscle and joint pain while having excruciating headaches almost everyday. Among other agonizing symptoms that complicate the situation.
I now have surgery scheduled for the first week of May ’17 to remove the tumor. I will be in the hospital for 3-7 days and my recovery time will be from 6-8 weeks. I will have to travel hours away to have the surgery and remain there during my stay in the hospital. My parents will be by my side during surgery. But unfortunately my children and husband will not be able to accompany me due to the expense and not being able to leave our farm animals unattended for that long.
During this time away from work I will be on short term disability. My employers short term disability plan only covers 80% of my wages during this time. This will result in my family undergoing a financial hardship as my husband and parents undertake the task of my care during recovery and attempting to cover the missing 20% plus extra expenses such as medicines and doctors appointments.
I am asking for your compassion and support to help my family and I through these trying times. This journey has been a roller coaster of emotions and physical pain for myself and my family. My Mother has been such a rock for me listening to me complain and cry. My Father has also been there for me always willing to talk and making me smile and laugh even if I didn’t feel like it. My Husband has taken over so much responsibility that was mine. And my children are always willing to help me out with the little things. It is frustrating going from being very active and able to do so many things I love to now only being able to go into the office to work several days a week and the rest of the week working from home doing little else because of the pain and the fatigue. I just want to get back to normal.
Update 5/3/17:
Kalyn’s surgery was very successful and the doctors said they where able to see and remove the tumor only taking 40% of her pituitary gland. She is in recovery now and will be in the hospital for the remainder of the week. She would like to thank everyone for their continuing support over the next few months while she recovers.
Update 5/4/17:
We got some bad news today. After removing the tumor along with 40% of Kalyn’s pituitary gland, her cortisol levels are still high, meaning there is still something else causing her cushings. So we are back to square one. Now we wait to see what the surgeons and the endocrinologists came up with. She is still in a lot of pain and exhausted because it is hard to sleep with all the packing in her sinuses. With this news she will probably have to stay in the hospital longer and may have to have another surgery to remove the rest of her pituitary if they can’t find anything else. The Dr’s may order a PET/CT scan to look other places for tumors but that may take up to 48 hours to get access to the machine.
Update 5/8/17:
Kalyn went in for a PET/CT scan this morning at 6:45 to look for any other tumors or cancer that could be causing the Cushing’s disease. Baring the scan finding anything, later this week the surgical team will go back in and remove the remainder of her pituitary gland. This will result in her being required to be on several medications the rest of her life. While removing the pituitary should solve the Cushing’s it opens the door to increased risk of complications and additional heath problems in the future. She will have to stay in the hospital much longer then anticipated and may have a longer recovery time. The children and husband where able go to OKC on Saturday to visited with her in ICU. This was the first time we have been able to see here in a week besides video chats. They spent several hours together and everyone enjoyed the short time with mom. Thank you Bob Eden for driving the family to OKC and for the pizza lunch everyone enjoyed. Kalyn remains optimistic and in high spirits considering the circumstances. She enjoys and appreciates all the kind words and support she has received though this difficult ordeal. The results of the PET/CT scan should come back quickly and we hope to not have to deliver any more bad news. This ordeal has been very stressful for her and the family and we are hoping for a favorable resolution soon. Kalyn and the family thank you for your continuing support and donations.
Update 6/26/17:
Kalyn is in critical condition in the CV-ICU at (hospital ommited) in Tulsa in a medically induced coma due to pulmonary embolisms in her lungs and thrombosis in her legs. She had a procedure last night to install a VC fiter and to remove as many clots as possible in her lungs. They cant use tPA to dissolve the clots without a great risk of bleeds in the previous brain surgery. Today was difficult. Kalyn had a cardiac event and coded for a few minutes this afternoon. They quickly resuscitated her with only 2 sets of chest compressions but at this point we are unsure why it happened. She stabilized very quickly afterwards with good rhythm and pressure. A blood clot may have temporary blocked something. She is still being kept sedated and intubated and they can’t move her yet to to do anymore scans and at this point they would not be able to use contrast due to the stress on her kidneys. At this point we are still just touch and go.Because she is in ICU you can not send flowers and if you would please ask a family member if there is an appropriate time to visit. Instead of flowers we are still in need of funds as the children and husband are having to make daily trips into Tulsa and back home each night and the cost of meals while we are there so any donations would be helpful. Thank you everyone for your kind words of support.
June 26, 2026
Adrenal, Adrenal Surgery, Sub-Clinical Cushing's, Treatments adrenal gland, Adrenalectomy, benign mass, bleeding gums, blood glucose, bruising, bursitis, calcium, carpal tunnel, cholesterol, cortisol, Cushing Syndrome, disability, Health, hypertension, hypothyroid, Hyzaar, lipitor, Magnetic resonance imaging, MRI, nerve block, nerve damage, neurontin, pain, Pain Management, prozac, spinal stimulator trial, steroids, tendonitis, thyroid, torn muscles, ulnar nerve entrapment, vitamin D 1 Comment
18 months ago I underwent an adrenalectomy (L) for a benign mass. My cortisol levels were slightly elevated, all tests suggested sub clinical cushings.
Before the surgery I felt great, no symptoms other than easy bruising, bleeding gums and mild hypertention. In fact, the reason I went to an endocrinologist was because I thought i had a hypothyroid issue and my fasting blood glucose was always around 110. The adrenal mass was an incidentaloma during a scan of my pancreas/abdomen.
During the surgery I suffered a positioning injury to my shoulder, arm, and hand. Permanent nerve damage and horribly painful to this day. My initial post op replacement dose of cortisone was 10mg twice a day even though the surgeon and my endo were quite aware of my injuries. I felt like I was dying. Short of breath, chest pain, no sleep ever to this day.
Finally after 6 months a doctor at the hospital were I worked as an RN took over and directed me to pain management and ordered MRIs. Torn muscles, bursitis, tendonitis carpal tunnel and ulnar nerve entrapement etc….Since then i have had to change endos because mine has become rude and my appointments brief. I make 0.5 cortisol, nothing.
I am still on disability and will be terminated permenently in September. Every morning I lie there writhing in pain, short of breath, crying. I am so lethargic once I force myself up I bump into things. Some days I can’t get up at all. All pain management wants to do is inject steroids. I have had 3 nreve blocks and a spinal stimulator trial which did more harm than good. I KNOW I am in steroid withdrawl but what do I do now?
It’s been 18 months and I can’t find an endo who will pay any attention to me…………….I also believe I still have a thyroid problem. My levels are ‘borderline’ just like my cortisol was but the symptoms are all there and very obvious. Plus my cholesterol ,untreated, is 295. I don’t eat junk at all. never did.
My meds are Hyzaar, lipitor, neurontin, calcium, prozac,and 10mg of cortisone a day. I ditched the vitamin d3 because they only check my D-25 not 1-25 D and I am afraid of having dysregulated Vit D metabolisn which increases inflammation…..
I don’t know what to do. Help 🙁
~~~
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June 23, 2026
Adrenal, Adrenal Surgery, Ectopic, Food-Dependent Cushing's, GIP-Dependent Cushing's, Treatments ACTH, Adrenal, adrenal gland, Adrenal insufficiency, Adrenocorticotropic hormone, antidepressant, bilateral adrenalectomy, BLA, cholesterol, Conditions and Diseases, constipation, cortisol, CT scan, cushing, Cushing Syndrome, dexamethasone suppression test, DHEA, Dr. Rosario Briones-Urbina, ectopic, face, fatty liver disease, GIP, Golden Oldie, Health, IBS, intestines, lymph, nausea, pain, period, pituitary, polypeptide hormone, skin, sweats, UFC, vision, Weight loss 8 Comments
Magdalena is from Windsor, Ontario (Originally Poland). She has Food-Dependent / GIP-Dependent Cushing’s Syndrome. This means that genetically, she has cells on her adrenals that are only supposed to be in her intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So when she eats, the hormone triggers her adrenal glands and they produce cortisol. It is an ectopic response that is ACTH-independent.
A Golden Oldie last updated 01/22/2008.
~~~
Hi, I am 22 years old now, at diagnsis. I have a rare form of cushing’s syndrome called food-dependant cushing’s syndrome. Sometimes it is referred to as gip-dependant cushing’s syndrome. This means that genetically, I have cells on my adrenals that are only supposed to be in my intestines. They respond to a polypeptide hormone (GIP) that is produced in response to food. So I eat, the hormone triggers my adrenal glands and they produce cortisol. It is an ectopic response that is acth-independant.
I am writing this bio because it was very hard to find this disease, and it was like nothing else, even normal cushing’s fit rather loosely.
I began having problems at age 12, but the disease did not “blow up” till I was 19. When i was 12, I started having stomach pains. First, the doctors said it was apendicitis, then my period, then lactose intolerance. This was on and off, and I kept eliminating foods that I thought i might be allergic too.
When I was 15, the problem intensified. I lost my period and my stomach aches grew worse; I noticed that my stomach was quite swollen after a normal meal, and everyone elses was not. I assumed that it was my fault and I should eat healthier.
Unfortunately, the stomache aches grew worse till my stomach swelled even below my breastbone and I could barely breathe. I started eating very little and very thought out proportions of food, often feeling that I was doing this to myself and then feeling that this couldn’t be normal.
At 17, I started getting really annoyed that my face was so swollen all the time and my skin so bad; I thought i was just ugly. I was quite thin at 5’5″ and 105lbs, but with a very swollen face and stomache. This was getting out of control, the pain was worse, and I was getting thinner. My yelled at me in class because I wasn’t jumping high enough and I told her it hurt cuz of my stomach, she told me I was too thin and that I probably had an eating disorder.
I was in so much pain, I would have gone to a doctor for a monkey growing out of my head. I went to the eating disorder doctor, I told her my stomach hurt. She told me I had an eating disorder (no kidding.) I was put into a group where they would feed me. Over the next two years, I was put on many antidepressants, fed weight gainers, but the pain grew worse and I grew thinner.
Eventually, they put me in the hospital where the problem grew much worse. I couldn’t even lay down because the food would come back up to my throat and I started having a problem with constipation. Nausea became a problem; thank God I only threw up once in my life, when I was five and I had the flu. I have never had a high temperature since, or thrown up since. This should have been a sign that something was wrong with my immune system, but no one listened. For some reason, my cholesterol was very high and I had a fatty liver. Needless to say, there was no improvement and I signed myself out after 6 weeks.
I knew there was something wrong. I was 19 and the pain was worse. I left my eating disorder doctor with the same complaint that I had come with. So she said that I had IBS. I knew that couldn’t be it, because it never went away, it only got worse, and it had nothing to do with stress or the type of food I ate. To the day of my diagnosis, I thought IBS was a bullshit diagnosis- we don’t know what’s wrong yet…
At 19 something odd happened, i started gaining weight very fast and my ankles and knees started hurting. I was pushing through the pain to eat because life was hard, but I started gaining weight too fast. I went off to a musical theatre conservatory in Feb 04 and disaster struck. I blew up like a balloon, my face looked awful and my stomach would hurt to the point I would become paralyzed. It hurt to breath and I could barely walk upright sometimes. I came home and we went through the diagnosises; pancreatitis, ibs, psychosis, eating disorder, lupus, diabetes, thyroid and celiac disease.
It looked like celiac disease so I eliminated bread, but little changed. It was winter and I could barely shower and comb my hair because I had so little energy. The weight would come on so fast that my skin hurt to touch, and my eyes were swollen shut. I also thought i was psycho, but a little voice said I couldn’t be.
The next october the same cycle occurred, really quick weight gain, fatigue, sweats, and blurry vision. Independant university study was hard, but I got through it. That May and everything started going down, I could exercise again. However, the fatigue, nausea, stomach pain and occasional flareups were a rollercoaster. I know now that these are signs of adrenal insufficiency because my acth was still suppressed. The flareups made me feel crazy, that i was doing this to myself by eating.
The third time this cycle happened was much more painful. It was sept. 06 and I was going to university again. The bachelor of design was tough and I had to focus so much on staying healthy. Going to the gym everyday to sweat so that my swelling would go down. Watching what I ate, doing an IBS diet. I realized I couldn’t digest fruit or vegetables. I kept going to endocrinologist because I had no period and my dhea was high (which worried my gynecologist), but they all said it was nothing. My stomach aches occurred after eating, and even drinking water. The doctor at my school told me that I should know how to stop eating and drinking (He was a really fat, sweaty guy too). I had constipation for 10 days straight and laxatives barely worked. I had such swollen lymph nodes that I tasted raw blood in my throat and could barely swallow. Needless to say, I came home.
I ended up in the hospital at Christmas. The ER doctor and gastroenterologist both said there must be a endo problem because I had been constipated for 10 days, colonoscopy laxatives weren;t working, and my intestines and bladder was so full they couldn’t see on the Ct scan.
I finally went to an endocrinologist in Toronto, Dr. Rosario Briones-Urbina. I suggested Cushing’s, she said I was too skinny. Though I had just gone from 110lbs to 130lbs in two weeks. She agreed to test me in Jan. The test came out 550 out of a max of 250. She waited three months to do the dexamethasone and it was too late, it was march and my cortisol had gone to 90 (the min. was 60). She said she had never seen such a quick cycle.
I wanted to show her just how fast the cycle was; I took a UFC one day that came out 90, the next day I had a party, ate just like everyone else, but got a paralyzing stomach ache and sweats. I did a UFC the next day and it came out 350 (max 250). She was shocked. She said my symptoms fit an extremely rare form called food-dependant cushing’s. Unfortunately, the testing is not standard and I am waiting for it. After it is done, I will have a bilateral adrenalectomy.
If you got this far in my story, thank you for baring with me. I haven’t found a story like mine and wanted to share it, cuz I spent so much time looking. Over two years, I saw 24 specialists. I don;t know how I got through it, I must of been quite a witch with a B. However, I kept pushing. I studied at home independantly to keep me going and have now been accepted to medical school.
The most important advice i have to give is this:
June 18, 2026
Adrenal, Adrenal Insufficiency, Adrenal Surgery, Cancer, Golden Oldies, In Memory, Other Diagnosis, Treatments 24-hour urinary free cortisol, abusive, adrenal hyperplasia, bilateral adrenalectomy, BLA, Blood pressure, bruising, Buffalo hump, cancer, cardiac cath, Chiropractor, COBRA, concentration, cushing's, depression, dex test, disability, energy, fatty lipoma, hair, heart, hematoma, hirsuitism, HMO, hospice, In Memory, ischemic tissue, laparoscopic, leukemia, Moon face, morphine, MRI, NIH, pain, Pfen-fen diet, physical therapy, plastic surgeon, psychiatric nurse, rib fracture, sinus infection, stress, surgeon, swelling, t-boned, weight, X-rays 1 Comment
Portland, OR, Cushing’s Conference, October 2003, Day 2, at a “House of Magic” dinner.
Portland, OR, Cushing’s Conference, October 2003, Day 3. It was very windy on the Oregon Coast!
Brighton, MI: Cushing’s Weekend, October 2005
Columbus, OH Cushing’s meeting, 2007
Diana’s official obituary from Adams Funeral Home:
Diana Lynn Alexander Crosley, age 58, of Sidney, passed away peacefully on Wednesday, June 18, 2014, at 10:10 p.m. at her residence surrounded by her loving family. She was born September 30, 1955, in Sidney, the daughter of Francis Alexander, and the late Laverne Egbert Alexander.
Diana is survived by her father and step-mother, Francis and Carole Alexander, of Sidney; daughters, Stacie Crosley, of Columbus, Casey Crosley, of Silver Spring, Maryland, Ericka Crosley, of Sidney; one granddaughter, Ella Laws, of Sidney; two sisters, Kathy and Randy Watercutter, of Minster, and Susan Alexander, of Mt. Vernon, Missouri.
Diana was a 1973 graduate of Anna High School. She was a registered nurse for many years. In her spare time she enjoyed meditating and doing yoga. She also enjoyed relaxing at the beach in Florida.
Her family, her children and especially her granddaughter, was the love of her life. She will be deeply missed by all.
The Crosley family would like to express their sincere thanks to Ms. Lisa Blagg and the entire staff of Wilson Hospice for the continued compassionate care of their mother during her extended illness.
Funeral services will be held on Saturday, June 21, 2014, at 3:00 p.m., at the Adams Funeral Home, 1401 Fair Road, Sidney.
Family and friends may call from 12-3 p.m. on Saturday, prior to services at the funeral home.
Memorial contributions may be made to Wilson Memorial Hospice in Diana’s memory.
Envelopes will be available at the funeral home.
Diana’s Cushing’s Help bio:
As with everyone who suffers from this disease, mine is a rather long story.
In retrospect, I believe I became symptomatic sometime around 1994. Particularly, I remember the weight gain and facial hair. I was also somewhat depressed, but at the time I was in an emotionally and physically abusive relationship and had a lot of “on the job stress” in my position as a psychiatric nurse, working for an HMO. In addition, my grandmother was ill, I turned 40 and I attributed most of my problems to “life” In 1995, I accepted a job transfer from Dayton, Oh to Birmingham, Al. My grandmother had died and I needed to get away from the relationship. Unfortunately, the office in B-ham closed after approx 18months and I accepted a position as RN/Medical director at a residential facility for children with autism, seizure disorders and behavioral problems.
Meanwhile, I continued to gain weight, I began to notice some “swelling” on the back of my neck, I bruised very easily and had problems concentrating. I went on the Phen-fen diet and lost approx 40 lbs. Of course, now I’m wondering How did that happen? If the weight gain was Cushing related In June of 1998, I was thrown from a horse and fractured my pelvis in two places. Again unfortunately, the initial x-ray didn’t reveal any breaks, so I continued to work in extreme pain. My physician kept saying I was “just a slow healer”
At this point my blood pressure skyrocketed, the slightest scratch or bump would result in a major hematoma and skin tear. I had a cardiac work-up and was told I had ischemic tissue in my left ventricle and was sent to Houston for a cardiac cath.
Ok this part’s kind of funny, now of course at the time I couldn’t believe it. If anyone’s familiar with Houston, you know how terrible the traffic can be. I arrived for the cath, at 8am I was prancing like a wild animal in my room as I waited for the nurse to bring me my “sedative” At approx 11:00 she came in and began to take my vitals. Almost simultaneously, she was paged, returned to my room to tell me that the cardiologist had broken his tooth while eating a muffin for breakfast and all his procedures for the day were cancelled. I had to reschedule. Thankfully, when I did have the cath, he told my my heart” was beautiful” When I asked about the results that said I had dying tissue he replied “Oh, that must have been a blurp on the film”.
Moving on, even though my heart was fine, I had now regained all of the weight I had lost and was in constant pain. I then moved to Florida to stay with a friend’s mother, who had suffered a stroke. I began working per diem as a Home Health RN. I kept getting worse in all areas. I went to a doctor in Fl. who told me I was depressed and getting older, ergo all my problems. He told me that the buffalo hump was a fatty lipoma and referred me to a surgeon to have it removed. I went to a surgeon for a consult, was scheduled for surgery and my COBRA ran out on my insurance and I couldn’t afford to continue it.
I then went to a plastic surgeon, who confirmed it was a fatty lipoma, of course One of the biggest he had ever seen. He even photographed it to use for teaching seminars. And don’t you know, it grew right back. I spent 1700.00 (on credit) and it came back. At this point, I was having trouble standing, sitting, lying down. I was in constant pain and was having a lot of problems just trying to do my job. I went to another physician who thought I was depressed and maybe had leukemia because my lab work was all screwed up. Here again, the bad news was I was dying but it might take twenty years for the leukemia to kill me. At this point, I was ready to hang it all up.
Then, in Aug of 2001, I had just seen my last patient and was on my way to the office to complete the paperwork when a young man did a U-turn and t-boned me on the driver’s side. This just about put me over the edge, however, again, on the bright side, I went to a chiropractor, whom I had been seeing, and she ordered an MRI of my back. The MRI also, incidentally, revealed massive bilateral, adrenal hyperplasia.
I contacted the Nurse’s Endocrine Society. They sent info on Cushing’s. I could not believe the sketching of the women with Cushing’s it looked just like me. I also fit the symptom profile, almost completely. I was referred to an endocrinologist in Melbourne, FL. He did the 24-hour urines and dex test, confirmed the diagnosis, I was already convinced. He contacted the NIH as I didn’t have health insurance. I had a bilateral adrenalectomy (right side laproscopically and open left side as I began to bleed) Jan 17, 2002. I was discharged on Jan 26th.
I came to Ohio to stay with my daughters while I recovered, never thinking in my wildest imagination that that process would be so lengthy and utterly miserable. I hurt everywhere like I had never hurt before. I developed a serious sinus infection I went back to Florida in Feb. I stayed with friends. I applied for disability, I hoped for a worker’s comp settlement for my back injury. The insurance company who was handling my claim filed Chap 11 and all pay outs were suspended. They did pay for some physical therapy. There contention is that it was the Cushing’s that was my major problem and not related to the accident, however, duh! They’re right, but because I had the Cushing’s the injury I incurred in the accident was more severe than the average person would have sustained.
When I went to the NIH in Jan the chest X-ray revealed multiple healing rib fractures which were most likely a result of the accident. So, I’m still awaiting word on my disability, I was denied, appealed, denied again and am waiting for the hearing. In the meantime, my car was repossessed, I will most likely have to file bankruptcy and am now staying with my oldest daughter in Columbus.
I have lost approx 55lbs, my skin is healed, my buffalo hump and moon face are gone. I am still in quite a bit of pain in my joints, muscles and bones. I don’t have the energy I would like to have and I still have spacey moments. The mental part has been tough. A lot of days I really wanted to be dead. I was on morphine for my pain and I was so sick I would start vomiting and it would go on for 24-36-48 hrs. I finally quit taking the morphine and thank God, that has stopped. I am relying on my family and friends for everything and I’m used to being the giver, not the taker. I guess I’m learning to be humble and I am so much better, it’s just that I’ve just gotten access to the internet, and have been reading the chat board and message board and it seems that I am still a “slow healer”
It has been one year since that surgery and I guess my expectations were that if I kept trying to be patient, get through this year things would be back to a semblance of normalcy. OK I know I’m wordy.
Thanks for the support and I would welcome input from anyone.
Diana
Update January 28, 2011
It’s been awhile since I’ve been on the boards and I’ve tried to update my bio on occasion. However, due to my impaired technical abilities (lol) I was unable to figure out how to do so, even though Mary has made it SO easy. Again, lol
Anyway, the first five yrs post BLA were painful and traumatic but also a blessing. In 2005 I started taking yoga classes and that was the beginning of an amazing transformation for me. It led to meditation and an exploration of the spiritual meaning of this illness and of life in general. Of course the transformation wasn’t immediate and it is ongoing but I feel so blessed to be experiencing this life. I’ve learned to be grateful for the gifts of all of my experiences. Without Cushings, I never would have met some of the most caring and amazing people on this earth.
In July of 2008 I returned to Florida. I am now living in a little beach town, bought a bicycle and ride it almost every day. I still have pain, but it’s manageable and I focus on my breath and gratitudes as a way of managing it. I’ve learned the value of positive thoughts and intentions. I’ve learned that we are all more powerful than we may have ever imagined. I’ve met some amazing people here and continue to read and attent seminars and classes on exploring my purpose in this life and the gifts I have to give to the universe.
To all who are just beginning this Cushing’s journey, and for those experiencing the feeling of “no light at the end of the tunnel” -the light is there, just waiting for your arrival.
You can and will get through this, your life is not over.
Again, many thanks to Mary O who has given her gifts to help other souls navigate their way through a painful time
Much love to all
Diana
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