Hello my name is Monie, I am in my mid fifties and am here to learn and seek out help to deal with my health issues I have had for about 30 years.
I look forward to getting to know everyone and share the journey to health.
Voices from the Past: Monie, Undiagnosed Bio
August 12, 2025
Undiagnosed Health, health issues, journey Leave a comment
Voices from the Past: Zoann M (Zoann), Steroid-Induced Bio
August 11, 2025
Adrenal Insufficiency, Steroid-Induced Adrenal insufficiency, Asthma, endocrinologist, ER, pain, Prednisone, steroids 1 Comment
In July 2010 I was rushed to the hospital by a friend who was convinced that I was dying. Having had asthma for many years, I kept telling her I wasn’t having an asthma attack, I was just so tired I could barely hold my head up. The ER doctor was a brand new resident, she took one look at me and said “You’ve got Cushing’s.” I had no idea what she was talking about, but because I was too tired to care, I agreed to be admitted to the hospital for testing. Five days later I walked out with a confirmed diagnosis of exogenous Cushing’s Syndrome caused by massive doses of prednisone I had been taking for more than 10 years for the asthma.
Five years later I have had Adrenal Insufficiency added to the long list of conditions caused by the prednisone overdoses. I am steroid dependent now; 15 mg of prednisone daily keeps me from being admitted to the hospital for asthma attacks. Taking the drug that almost killed me in order to stay alive is one of the hardest things I have to do.
I am fortunate in that I have an excellent endocrinologist who works well with my primary care doctor to manage the multiple medications I take to cope with my various chronic conditions. Right now the thing I struggle with the most is the pain – muscle pain, feet pain, joint pain, nerve pain. Trying to find medications to deal with the pain is almost impossible; I can’t take most narcotics, even if I could find a doctor to prescribe them.
My endocrinologist told me at our last visit that there was nothing else he could do for me except monitor my condition. My primary care doctor has said the same thing. It is very discouraging to be told that there is nothing else that can be done.
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Voices from the Past: Laura (Loves2Cruise), Adrenal Bio
August 10, 2025
Adrenal, Adrenal Surgery, Treatments adrenal fatigue, adrenal gland, cortisol, Cushing Syndrome, diet, Dr. James Findling, fertility, Google, Health, Maca root, Milwaukee, miscarriage, Natural family planning, pregnancy, RT3, stress, T3 Leave a comment
The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia)
I was diagnosed with Cushings over 14 years ago and really thought it was over and done with. After seeing several doctors while starting in high school and into college, primarily to explain why my cycle had completely stopped, I was given various responses from the typical, “oh, it’s probably just stress” to “let’s just put her on birth control and it will start right back up.” And while the latter may have been true, it certainly didn’t explain the weight gain round my midsection, especially when I was eating so little while in college because I just couldn’t figure out why my pants wouldn’t fit anymore. It also didn’t explain the “buffalo hump” at the base of my neck, or why my hair seemed to be falling out. Or why my blood pressure was high all the time. Or why I had constant headaches. So only after my mom refused to accept “stress” as an answer, she turned to Dr. Google, and started looking up my symptoms. She finally convinced a doctor to test my cortisol levels, which were off the charts.
Luckily, I went to college in Milwaukee, and saw Dr. Findling who immediately diagnosed me with Cushings. After dealing with this for several years, Dr. Findiling diagnosed the disease, located the tumor (left adrenal gland), had it removed, and was on my way to recovery in a matter of a few months. By the time I returned to college in the fall, after having the turmor removed over spring break, people did not even recognize me, my appearance had changed so drastically.
Well, fast forward to today, and I am wondering if the one adrenal gland could have anything to do with what my husband and I have dealt with for the past 2 years. We conceived 2 children easily with no problems who were born in 2006 and 2009. When we tried to have baby #3, two years ago, something was different. We practice natural family planning, so I was very aware of my cycles. But after a surgery and terrible cold, things changed. No longer could we get pregant. I saw several different doctors who all said again, “it’s stress” or “there’s nothing wrong with you.” One even gave me a brochure on how to have a baby. Really! Anyway, I started myself on an “adrenal fatigue” diet last fall, started taking Maca root (because I read it was good for adrenal health), and we got pregnant last November after trying for over a year and a half.
Unforunately, at a 13 week ultrasound, we discovered that the baby stopped growing at 9 weeks. We figured we were just a statistic, and 1 in 3 pregnancies ends in miscarriage. We did not have any testing done because we figured we were just one of the odds. We conceived again in May, only to find out at 12 weeks that our little peanut stopped growing at 11 weeks. We opted for testing this time and are awaiting the results to determine whether or not there was a chromosomal abnormality. Although I am sure it happens, to lose 2 babies, after confirming heartbeats multiple times, seeing it move around, and find out it has passed is devestating. I won’t forgive myself if this happens a third time without ruling out the role my one adrenal gland may have played in this.
One doctor did test my thyroid during our efforts to get pregnant, and my RT3 was very high, especially in relation to my T3. He just put me on T3 and said I was “stressed.” I am now wondering if yes, I was stressed, but my one remaining adrenal could not handle the necessary work required to sustain a pregnancy. Or affected our efforts to even conceive. I have read (though don’t completely understand) the relationship between the RT3 and adrenal glands. I am going to return to Milwaukee to have my remaining gland tested to see if it is indeed working at an optimal level.
I guess my point in joining this board is to not only share my story with Cushings, but also to see how patients have fared after the Cushings was resolved. Has anyone had any long-term affects from only having one adrenal glad? Specifically as it relates to fertility? Curious to hear from others who have gone through this experience. I know there are not many of us. I can’t tell you how many times I have heard, “wow. I have never met a cushings patient before” from various doctors. But I am glad to find others who have shared this experience.
Related articles
- Adrenal Glands (cushieblog.com)
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Melissa (Melissa), Suspected Pituitary Bio
August 9, 2025
Hypothyroidism, Other Diagnosis, PCOS, Pituitary, Undiagnosed allergies, anxiety, birth control pills, brain, Buffalo hump, depression, endocrinologist, hair loss, headaches, hyperthyroidism, libido, microadenoma, moonface, MRI, osteoarthritis, panic attack, PCOS, pituitary, Prednisone, puberty, weight Leave a comment
The pituitary gland
At only 19, I have been through a lot medically. I went through puberty at the young age of 8 and by age 15 was diagnosed with osteoporosis after breaking 20 bones within a year’s time. I had always had hormone problems and was put on birth control pills in hope to help.
This January I stopped the pill and within a few days started to feel crazy. After an allergic reaction to nuts I went to the hospital and was put on prednisone. Within a few days I was miserable and ended up on suicide watch. I knew my hormones were wacky and I had panic attacks, depression and anxiety all of which I never had before.
Over the next two months I gained 40+ Lbs all in my stomach and got “moon face” with a slight buffalo hump. I was exhausted all the time. I bruised easily and was afraid to talk to doctors for fear they would put me in a mental ward for my anxiety and depression. I could barely sleep through the night becuase of nightmares. I had no libido and started growing a lot of facial and body hair…
When I came home from freshman year, I finally went to the doctors. Urologists, cardiologists, endocrinologist, gynogylogists you name it. Most wrote me off. The endocrinologist diagnosed me with PCOS and hypothyroidism after blood work and becuase of my symptoms. However I kept having headaches and would be freezing and rapid rate heart even when laying down. I finally perseuded the doctor to do a brain MRI. I got the results last week and there is a suspected 3mm pituitary microadenoma. Of course my endocrinologist left for a month vacation and I go back to school next week.
Right now I’m in the process of figuring out where to go and what to do but I feel like this would be the closest thing to what I have… Hopefully answers will come soon
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Rsh (Rsh), Undiagnosed Bio
August 8, 2025
Cyclic, Diabetes, Other Diagnosis, Undiagnosed Buffalo hump, cyclical Cushing's, diabetes, high blood pressure, red spots, thin skin, Weight gain Leave a comment
I am currently undergoing tests for cushing’s as I have all of the symptoms including 50 pound weight gain in 6 months, thin skin, buffalo hump, mid body weight gain, new diabetes and new high blood pressure, red spots on my face.
Some of the tests have come up high but some have come up normal so my endocrine doctor is thinking perhaps I have cyclical cushing’s. Becoming very frustrated as I continue to gain about 10 pounds a month ( have not changed my diet which is low carb).
I hope to have some answers soon, but the Dr wants me to wait another two months to test again.
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Voices from the Past: Dana (abnormalaties), Adrenal Bio
August 7, 2025
Adrenal, Cyclic Addison's disease, adrenal gland, cortisol, Cushing Syndrome, Health, Medicine, NORD, United States Leave a comment
i have been sick going on 8 years, and i discovered i have an adrenal mass in dec of 12.
no one will do proper testing on me,and i didnt supress on the one test-so even tho i have ecery symptom even in appearance,i have been shunned by the medical community even a nationaly known hospital.
i was told “everyone wants cushings” by an endo at nasville tenn’s vanderbilt..
i live life one day at a time with every 4 months having a good 6 weeks of rapid feel good time then like a pit viper it hides behind the wall and brings ne down again some days not being able to get up.
i have allpied with NORD. its my only hope.
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Voices from the Past: Jason, Adrenal Bio
August 6, 2025
Adrenal, Male ADD, ADHD, bilateral adrenal masses, Bipolar, cortisol, depression, moonface, pain, rage, schizoaffective, sweating, thin skin, Weight gain 1 Comment
Growing up, I was always quiet and withdrawn. I struggled in school with memory issues and was always embarrassed by my excessive sweating. I continued to have issues growing up and then something happened in 2001. I would have fits of rage, massive sweating, psychotic episodes, periods of major highs and periods of massive lows.
In 2003, a psychiatrist labeled me bipolar, schizoaffective, ADD, ADHD, and major drepressive. I took their cocktail of meds to only get worse. I would end up in a mental hospital (5 times).
In approx. 2005, I was done with them and I stopped everything and I just hid behind closed doors so to speak. Also in 2003, I just found records(2015) of bloodwork I had done in 2003 which showed high Hemoglobin and also high Hematocrit levels with high WBC count. Nothing was mentioned to me about this. I keep struggling to get answers.
In July of 2014, I started massive pains in my stomach with rectal bleeding and major flank pain. I went to the doctor and he ordered a CT of my abdomen. The CT showed bilateral Adrenal masses(left was 2.2cm and right was 3cm). He said these were “incidental Adenomas”. I am waiting two more weeks to have my low dose cortisol test performed. When I did the 24h urine to rule out pheochromocytoma , all was fine except plasma metanephrines which was slightly elevated and the doctor said there was a “near zero” chance of me having a Pheo.
I am still having these symptoms: weight gain (20Ibs. since 2014), “moon face starting (2015), thinning, fragile skin that bruises easily, slow healing of cuts, bites and infections, decreased libido, Fatigue, Muscle weakness, Depression, anxiety and irritability, Loss of emotional control, Cognitive difficulties and worsened high blood pressure and pulse.
I now have a new mass in my right armpit. An ultrasound was inconclusive.
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Voices from the Past: Kari W (karialeen), Pituitary Bio
August 5, 2025
Hypothyroidism, Other Diagnosis, Pituitary, Pituitary Surgery, Treatments Cushing's disease, hypothyroidism, pituitary, pituitary surgery, recovery Leave a comment
I am a 37 year old female.
I had a 6mm tumor removed from my pituitary on May, 7th that was causing me to have cushing’s disease.
I also have hypothyroidism.
I am now in recovery and I had no idea what I was in for. Some days i wish for my tumor back. 🙁
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Voices from the Past: Shelleyw, Adrenal Bio
August 4, 2025
Adrenal, Ehlers-Danlos syndrome, PCOS, Undiagnosed 24-hour urinary free cortisol, ACTH, Adrenal, Adrenocorticotropic hormone, CBG, Conditions and Diseases, cortisol, Cushing Syndrome, dexamethasone suppression test, DHEA, DST, Ehlers-Danlos syndrome, Endocrinology, Health, PCOS, Polycystic ovary syndrome, salivary, thin, UFC, urine 2 Comments
Hi all! I am joining this group because my 19 year old daughter is going through testing for cushing’s.
She has PCOS although she is very thin. Her cortisol levels have come back high on more than several occassions, so our GYN sent us to the endocrinologist.
They have done 2 24 hour urine, Dexa suppression, cortisol serum, ACTH, CBG, DHEA, 2) Salivary tests. This has been ongoing since May. The Endo said that she has failed all of the tests, and she just did a third 24 hour urine and CBG again.
They are really puzzled, as she really doesn’t fit the normal symptoms list(neither did she fit PCOS). They have said that it seems to be adrenal as the ACTH was low and the DST was high. So we are patiently awaiting the results.
She is my only child. I am so afraid. We also have Ehlers-Danlos syndrome.
Taylor D, Pituitary Bio
August 3, 2025
News Items, Pituitary, Pituitary Surgery, Treatments Cushing's disease, Dr. Theodore Friedman, insomnia, new item, panic attack, pituitary, transsphenoidal, Weight gain Leave a comment
FLORENCE, S.C. – After struggling with a mysterious illness for nearly three years, Florence resident Taylor Davis is using her diagnosis of Cushing’s disease to raise awareness.
Davis was a healthy young adult when she started as a student at the University of South Carolina in the fall of 2015, but soon into her college career, she began experiencing several symptoms, such as weight gain, insomnia and panic attacks. Davis spent the next three years going from doctor to doctor trying to get a diagnosis for her symptoms.
Since her diagnosis, she has been trying to raise awareness through social media about her experience with Cushing’s disease.
Cushing’s disease is a hormonal disorder caused by high amounts of cortisol, or the stress hormone, in the body, according to the Mayo Clinic website.
During her freshman year, Davis began struggling with insomnia and started gaining weight. At the time, Davis brushed them off. Davis’s symptoms progressed to having panic attacks during her sophomore year.
“I’d be driving down the road, and my whole body would start freaking out,” Davis said. “I’d get heart palpitations, my heart rate would go crazy. I felt like I couldn’t breathe. It was intense panic attacks.”
In addition to the onset of panic attacks, Davis’ insomnia got worse, and she continued gaining weight. Davis also began losing clumps of hair, but she searched the internet and thought it was just normal.
The summer after her sophomore year, Davis said. she went to the doctor for answers with little luck.
“My doctor just kind of like brushed it off,” Davis said. “She told me it was probably just stress from school and stuff like that, and that I needed to diet and exercise more, but I was like, ‘A girl can only diet and exercise so much.’”
As Davis started her junior year, she said. her symptoms progressed to losing larger amounts of hair, which left bald spots that she tried to cover with extensions. At the time, Davis attributed the hair loss to bleaching her hair.
Then Davis began craving copious amounts of salt and large amounts of water.
“I started drinking water bottles by the case each day” and having to go to the bathroom frequently, Davis said. “It would just run straight through me.”
By the time the spring semester came, Davis’ panic attacks began causing blurred vision, nausea and dizziness. She said they felt like heart attacks.
Davis’ mother, Amy Lewis, got her admitted to McLeod Regional Medical Center for testing over spring break. Her kidneys were tested. An MRI and other tests were conducted, but Davis received no answers except that she was fine.
Davis’s panic attacks continued to get worse, so she and her mother began researching all of her symptoms for answers. Their research pointed them toward Cushing’s disease.
After another episode that caused Davis to pass out, her family took her to the emergency room. This time, the doctor had an answer: a brain tumor on her pituitary gland.
“It was so crazy the feeling I had at that moment,” Davis said. “I was so relieved, because I was so terrified for months at that point, and no one was going to help me because I had all of these problems.”
After the emergency room visit, Davis had to wait weeks for an endocrinologist appointment in Florence, but the doctor said she didn’t know enough to diagnose her.
She and her mom found an endocrinologist and neurosurgeon in Chapel Hill, North Carolina. The encodrinologist told her Cushing’s disease is too rare for her to have and said Davis needed to lose weight. The neurosurgeon told Davis an endocrinologist would have to prove that the tumor was causing Cushing’s disease before he would take it out.
By this point, Davis medically withdrew from USC because she could barely walk to class.
Determined to get answers, Davis joined several support groups on Facebook for Cushing’s disease.
The Facebook group led her to make an appointment with Dr. Theodore Friedman in Los Angeles, who was able to diagnose her with Cushing’s disease in October of 2018. In November of 2018, Davis had surgery to remove the tumor from her pituitary gland.
Since the surgery, the tumor removal has caused adrenal insufficiency, so Davis has to take a steroid-replacement medicine. She has been weaning herself off the medicine so that her pituitary gland will begin making cortisol again.
Davis has been using social media, especially Instagram, to post updates on her journey with Cushing’s disease. While she was at USC, she was a public relations major, and she has always loved telling stories.
“It just came natural to me as it (Cushing’s disease) started happening to start sharing my story,” Davis said.
Davis said she receives a few messages with questions about her experience every day from people who see her posts.
“ That (Cushing’s disease) really gets to me sometimes, but talking to those people, helping other people and sharing my story, that brings me back up,” Davis said. “That’s what keeps me happy and keeps me from getting to that dark depression.”
Davis said she is also in the process of starting a YouTube channel to document her experience with Cushing’s disease, because she wants to help others as they go through the process of a diagnosis.
This bio is from https://www.scnow.com/news/local/article_9c54e1e6-9615-11e9-84d3-8ff51e77dc88.html
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