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Helena (hummerbird), Steroid-Induced Bio

December 11, 2025

MaryO (SLE) Systemic lupus erythematosus, Fibromyalgia, Other Diagnosis, Steroid-Induced , , , , , , , , , , , , , , , , , , , , Leave a comment

Hi! My name is Helena (hummerbird). I am going to be 60 next week, Nov 16. I have come full circle with this.

I knew I had adrenal problems 12 years ago when I got stuck in the ‘fight or flight reflex’. I paid to have saliva tests done and it showed that I was dumping cortisol into my system early evening with my lowest point being 6am in the morning. I showed my allopathic doctors the tests but none would put any stock into saliva testing and just blew me off (this was 2002).

Some of my first signs were extreme insomnia yet when I did sleep I would still feel extremely fatigued, flushing of the face, neck, chest, and back, weekly migraines and daily headaches which started after I was 45, unexplained weight gain, crazy buzzy internal tremor adrenaline smacking (I could actually taste it!) jitters that would not go away, hypersensory (especially to light and sounds), feeling painfully sunburned even though I had not been out in the sun, pain in my legs going way beyond restless leg syndrome, totally fearful of everything, developing a hump between my shoulders and a host of other symptoms.

I was first diagnosed with fibromyalgia 03, then SLE Lupus 09 (positive ANA but no markers).

We moved to Colorado in 2012 and then back to Oregon 2014 and when I saw my rheumatologist again after 2 1/2 years (Oct 2014), he said it looks like you have Cushings? So at the moment I am suspected to have Cushings. I have been reading up on it and I am totally textbook (including the fact that I could literally step into the profile of the picture of the woman with Cushings).

Not sure if this is drug induced or if the prednisone finally brought out the demon that’s been tormenting me. My rheumie wants me to slowly wean off the prednisone. My dosage was 5mgs per day unless I was flaring (dealing with horrible muscular pain and internal tremors) then I was to do a step down starting at 30mgs back to 5mgs. I probably do a step down every other month.

My internist in Colorado wanted me to get off my Percocet 10/325mgs 4 times a day and try to deal with the pain. For the first time in my life I used MJ edibles to get off the Percocet with only a week of hard withdrawals. I was on the MJ edibles for 3 weeks until I realized I was allergic to it! I now take 2 Tramadol 50mgs 3 times a day to control pain. On the negative side this is not working because I have too much breakthrough pain but on the positive side I have a clearer head (I’m able to focus and read again!).

Over the years my days have gone from one ‘down’ day a week to a whole month of down days. I have lost my quality of life and pretty much my social skills. My venturing now is from my bed to the bathroom, kitchen, and possibly my recliner if I’m not feeling too dizzy.

I have three saints in my life, my husband and my two girlfriends who take care of me. I know that God has a plan for my life and I have faith in knowing that I’m going to feel well again some day. It has been a long and expensive road to travel to get to this point. I am not looking to have Cushings but it is a diagnosis that finally fits completely. I’m looking forward to meeting the support group.

Love you all and thanks for taking the time to read my post.

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Amber D, Pituitary Bio

December 11, 2025

MaryO News Items, Pituitary, Pituitary Surgery, Success Stories, Treatments , , , , , , Leave a comment

Adapted from https://www.stuff.co.nz/business/money/130677664/woman-loses-home-after-insurer-turns-down-brain-tumour-claim

 

 

When Amber Denney​ bought life and critical condition insurance from Bank of New Zealand, she thought it would help pay her mortgage, if she ever fell so seriously ill she could not work.

But when she contracted a debilitating and life-threatening brain tumour, BNZ’s insurance proved worthless.

Denney was diagnosed with a pituitary tumour in 2020​, and underwent brain surgery, several years after symptoms emerged, including rapid weight gain, muscle loss, brain fog, fatigue, depression and severe headaches.

But despite her neurosurgeon saying Denney fitted the criteria to succeed in her $52,000​ claim, BNZ Life Insurance declined the claim, after taking six months to come to a decision.

As a result of her illness, Denney was unable to work, and lost the home she bought when she was 21. She wonders to this day, if the insurance money would have allowed her to save it.

At a time Denney, now aged 26​ and renting in Hamilton, was losing her home, banks were working to make sure people did not lose their homes in the economic disruption of the Covid-19 pandemic.

BNZ refused to comment on whether the insurance it sold had failed Denney in her time of need. But Partners Life, which bought BNZ Life Insurance after her claim was decided has promised to take a fresh look at her case.

Denney has yet to concede defeat to her insurer, and may take a claim to the Banking Ombudsman claiming service failure by BNZ, and the Insurance and Financial Services Ombudsman over the decision by BNZ Life to decline her claim.

But she says she is speaking out to warn others that their insurance may be much more limited than they think, and fail them at their time of direst need.

Her cluster of debilitating symptoms resulting from the pituitary tumour is called Cushing’s Disease.

“I’m not the only Cushing’s person who has had this trouble with the insurance companies,” she says.

“The endocrinologist told me about all the other people who have been struggling,” says Denney, who before her illness was fit enough to climb mountains and shear sheep.

There were several critical failures of the critical condition insurance BNZ sold her, according to Denney and insurance lawyer Tim Gunn, who is helping Denney pro bono.

While the BNZ Life policy did cover pituitary tumours, there were two caveats.

First, it had to produce neurological damage, and functional impairment, which a specialist considered to be permanent.

Second, it had to be removed by a craniotomy, surgery that requires cutting through the skull.

Gunn says the requirement for a craniotomy is unreasonable, unfair and outdated.

In recent decades the primary surgical option for pituitary tumours was not a craniotomy, but keyhole surgery, which was used to save Denney’s life.

“The method of surgery to remove the tumour was the most current and accepted method,” Gunn said, and was now used in 95% of pituitary tumour surgeries.

Craniotomy surgery carries a higher risk and was not as effective, he says, and requiring it was unreasonable.

But Denney and Gunn say the policy was also fatally flawed because it could not do what she was sold the policy for in the case of a policyholder contracting a pituitary tumour.

It takes so much time for medical specialists to conclude that damage is permanent after an operation, that paying a claim in time to help save a policyholder’s home is not possible, Denney maintains.

One communication from BNZ Life dated September 2021, told Denney that despite her being diagnosed in July 2020​, operated on in September 2020​ during the level 4 lockdown, proof of permanency had still not been established.

Denney says she has been left with permanent memory loss, severe headaches, and other symptoms of Cushing’s Disease, and can’t understand why BNZ Life is not paying.

“It’s blatantly obvious. I’m struggling. I just don’t get it. It’s extremely unfair,” she says.

“BNZ has failed in their responsibility to ensure that Ms Denney was adequately protected,” Gunn says.

Denney says one horrified BNZ worker told her not to let the bank win.

“She advised me, it was her exact words, ‘If you have the energy to fight, fight them until the end’,” she says.

BNZ would not answer the allegations, saying only that all BNZ Life’s records had moved to Partners Life, though Denney remains a BNZ customer.

BNZ had sold the business to Partners Life, which has in turn been sold to Japanese insurer Dai-ichi Life.

Partners Life has promised to review the decision taken by BNZ Life to turn Denney’s claim down.

It said BNZ Life’s conclusion was that while the condition Denney suffered was most certainly traumatic, it was not covered under the definitions in the policy wordings.

Critical condition (often called critical illness) insurance was not designed to cover every possible health emergency, it said, but did not comment on the specific allegations Denney and Gunn have made, as it had only been alerted to them by Stuff.

It said it would contact Denney about the review of BNZ Life’s decision to decline her claim.

Partners Life says its claims philosophy is that, “if it’s grey, we pay”, and “where the medical information is unclear or conflicting, we will remove the uncertainty and simply pay your claim”.

Denney said her surgery saved her life, and her weight has dropped by 35kg​.

Doctors told her in 2020 that without the surgery she would have two years to live.

“I’ve passed that two years now, so every day’s given to me now,” she says.

At its worst, Denney’s symptoms were so bad, she was unable to work for nearly two years, though her life is on the up, and she is once again dreaming about buying a home.

She has landed a job at a supportive employer in Hamilton.

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Rashelle, Pituitary Bio

November 8, 2025

MaryO Addison's Disease, Adrenal, Adrenal Surgery, Bipolar, Other Diagnosis, PCOS, Pituitary, Pituitary Surgery, radiation, Recurrence, Success Stories, Treatments , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , Leave a comment

From 10/11/2010:

My name is Rashelle and here is my success story.

I grew up as a tall, skinny, athletic and active girl. I was one of those girls you envied who could eat what I wanted, when I wanted without having to worry about gaining weight. In fact most my high school life I maintained a steady weight of 118 pounds.

That all changed in the blink of eye during my senior year of high school. At 18 yrs old my once long and skinny face, turned round and moon-like. My stomach, once flat as a board, now looked like the belly of a pregnant woman. I once stood tall but found it difficult to keep my shoulders back with the “buffalo hump” now protruding behind my neck. My nice long legs now were now covered in stretch marks and I started getting unwanted hair in places where hair should not grow on a girl. I stopped getting my period, felt tired all the time and started to get really bad migraines. I suffered insomnia and depression.

I knew there was something wrong but didn’t know what. The worse part was the embarrassment of gaining so much weight, over 50 pounds in a matter of 4 months.  I would run into old classmate and I could tell by the look on their faces what they were thinking. Some would do double takes, not even recognizing me at first glance. Once I ran in to my high school crush, whom I hadn’t seen in years, and he was so confused by my appearance and swollen face that he asked if I had just gotten my wisdom teeth out? I wanted to crawl under a rock and hide.

After being testd for all sorts of thing,  my family doctor (whom I’m sure thought I was a hypochondriac by now) referred me to an Endocrinologist in 1999. Finally I would be getting some answers!

Much to my disappointment the specialist found nothing wrong with me except claiming that I had a bad case of Polycystic Ovary Syndrome (PCOS). Regretfully this was a wrong diagnosis that caused me to live with Cushing’s disease 4 years longer than I could have. I was prescribed some medication to help with my facial hair on my chin and upper lip. But that was the least of my worries, the hair was hardly noticeable, it was my weight that I was concerned about. From then on I  became an exercising dieting queen. I was going to Curves and working out at the YMCA and I tried every diet imaginable from Weight Watchers to Jenny Craig, Atkins to Body for Life. But no matter what I did nothing seemed to work. I was so frustrated! My last resort was to lay out the money to see Dr Lefebvre, a weight maintenance control specialist. After a few months of treatment, being told to eat 500 calories a day, and losing a minimal amount of weight, I was questioned about how much was I really eating as to inadvertedly accuse me of being a closet eater.

In the year 2000 I went backpacking through Europe for 2 months. Despite the headaches, fatigue and extra weight I had to carry around I was determined to have a good time. The trip was challenging, after 2 months of walking everywhere with a heavy backpack on my back I still had not lost any weight. During this time I was also earning a Degree in Journalism and working lots of hours. Trying to balance school, work and a social life was a difficult because I was exhausted all the time and had zero energy.

Fast Forward to November 2002, age 23; my mom had been with me through this whole rollercoaster ride and was just as frustrated as I was. One night she was searching the internet for what could possibly be wrong with me when she came across this website on Crushing’s Disease. She called me over and we were amazed to find that I had almost every single symptom listed! So the next day I asked my doctor for if I could get a second opinion from a different Endocrinologist.

This time my new specialist said it was unlikely I had Cushing’s yet sent my to get a 24 hr urine test, something the previous Endo had neglected to do. She said it was the “golden test” that would confirm if I did indeed have it. I remember when the test results came in and I got the news. My cortisol level was unequivocally elevated at 1061.3 nmol/day indicating that I most certainly had Cushing’s disease. I was so scared, yet even more so I was relieved that I had finally been diagnosed. The next step was an MRI to determine whether or not I had a tumor on my pituitary gland or on my adrenal gland. As it turned out the tumor lesion was on my pituitary and measured 0.9 x 0.9 x 1.6 cm in height. It was explained to me that pituitary tumors have a 65% cure rate, but there is a lack of cure with pituitary surgery when the tumor is over 1 cm. So my cure rate goes was only 35%. Even so I was anxious to proceed with the surgery despite these statistics.

On Feb 7, 2003 I had the surgery and was discharged from the hospital 5 days later. The road to recovery was a long one but I had high hopes when I notice that my headaches had disappeared and I got my period again for the first time in 4 years. However, I still appeared quite “cushingoid.” Doctors believed that I had been cured but could not tell for sure as it was hard to distinguish scar tissue from the tumor on the MRI. They warned me that results (losing the weight) could take a while so I went on with my life waiting and watching patiently for any changes.

Later that year on October 2003 I was rushed to that hospital for what appeared to be a really horrific migraine. But it was a lot different then any other headache I had ever had. The pain was so intense and almost intolerable I wanted someone to take a gun a shoot me! I spent 36 hours in Emergency being treated for what the emergency doctors diagnosed as “just a bad migraine.” Finally obtaining a CAT scan showed that it wasn’t a migraine after all, my tumor was still there and had hemorrhaged and bled into my optic nerve. I had right sixth nerve palsy with decreased visual acuity in my right eye. I spent 3 weeks in the hospital and could not see properly out of my one eye for over 5 months. Luckily my vision eventually came back 100%. My specialist and surgeon decided that the hemorrhaging had been a blessing in disguise as it could mean that the tumor could be all gone after the episode but it would be too soon to tell.

Then, March 2004 I awoke in the back of the ambulance to be told that I had had a grand mal seizure. Doctors found this to be a mystery since I had no history of seizures or epilepsy. Tests concluded that the crushing’s was still present and I had another MRI which showed residual tumor still extending into the cavernous sinus which is not approachable surgically. The tumor was now only a dangerous 4 mm from my optic nerve.  So the next option was to be referred to a Radiation Oncologist to discuss the option of radiation.

On Oct 20, 2004 I had stereotactic radio surgery. The following week I felt great until the effects of the radiationg suddenly hit me. The radiation took a toll on me and I could not even find the energy to get myself out of bed. It was by far the sickest I have ever been in my whole entire life. Eventually, after being bed ridden for several months I regained my strength and things got back to normal. I still had not lost any weight and showed most of the signs of crushing’s. It is believed that by doing the radiation, it impacted my pituitary function causing it to lose partial functioning. As a result my adrenal glands started to over react to compensate which was not helping my Crushing’s at all.

So, the next step was for surgeons to perform a bilateral adrenalectomy. In June 2006 what was suppose to be a simple, not so risky surgery turned out the opposite. The procedure should have only consisted of 4 very small incisions done laparoscopy. However, during my surgery they discovered that my liver was too large and had to do a complete incision across my whole stomach in order to proceed. Post surgery my blood pressure was so high I was monitored and not let out of the post opt room for 14 hours. On a side note while going through my medical records I discovered that after they had stitched me up a I had to have an X-ray while still under the anesthetia . Apparently the operation room was missing a pair of scissors and they were thought to have been left inside me! Luckily they were found elsewhere.  My recovery was a long and painful but I kept hoping and praying that this would be the cure, especially after my long history of unsuccessful attempts. First the pituitary surgery, the tumor hemorrhaging, the grand mal seizure, radiation, and then the bilateral adrenalectomy. I couldn’t imagine what I was going to do if this did not work as I knew I was running out of options. My fear of never finding a cure led me to seek further answers.

In January 2007 at the age of 26 and a few months post op my parents took me to the Mayo Clinic in Arizona. With all my medical records in hand we met with top of the line doctors and discussed my condition and prior attempts to get cure my crushing’s. The doctors said it was unfortunate and just plain bad luck that I had encountered so many problems on my quest for the cure. As far as the specialist was concerned everything that could be done, had been done. Six months after I got my adrenal glands out I finally noticed that I had started losing weight. At this point I had given up on exercise and eating healthy so found it to be a small miracle. Day by day and month by month the pounds started melting away. I was losing weight as fast as I had put it on and the best part was I wasn’t even putting in any effort to do so. Before I knew it I was down to a healthy 130 pounds and back to myself.

At the age of 27, I had been cured of Crushing’s! I  to had overcome this horrible disease that It had overtaken my life and I\could  begin working on getting my life back. By this point I found it difficult to find a job in the journalism field due to the fact that I had a huge gap in my resume. Having graduated so long ago and not having had any experience made it impossible to even get an interview. Looking back at all I had been through I expected to be happy I had been cured but instead I strangely became depressed.

Once an dedicated Christion, I was now mad at God for making me miss out on so much. I felt like by now I should have been married, had kids, owned a home, been established in my career etc. But I wasn’t. I had lost out on so much precious time. I started to hate the job I once loved, sleep a lot, and do things that were out of character for me. I got involved in a relationship with a married man whom I had met on a plane and that didn’t even live in my city. It had been so long that any one of the opposite sex had even paid attention to me that I thrived on the attention. I latched on and became obsessed and needy (totally not me). I just could not find happiness and had delusions of what my life could be like with this secret love affair. On a whim I decided I was going to move to the same city  as him. So  I packed up all my belongings, ordered a moving truck, gave notice to the place I was renting, got a transfer at my job, and found a new place to live.

Three days before I was suppose to leave I overdosed on some pills. I dont remember the incident, not even taking the pills, just the part of having to drink that disquisting tar stuff. I was admitted to the Psych ward and held against my will. I spent 3 weeks as an inpatient and attended therapy sessions daily. I was diagnosed with bi-polar disorder and it was explained to me by my psychiatrist that I had been grieving from a sense of loss. Only the loss was not a person, it was a loss of time. While battling cushings I was always concentrating on getting better that I didnt even have time to focus on my life goals. But now that I was better I had time to realize all the I missed out on. After being released as an inpatient I became a mandatory outpatient. For one month I had to attend daily classes at the hospital. The sessions focused on being in the present and included things like art classes, sailing, yoga and medititation as well as daily therapy sessions. I learned all sort of coping mechanisms so now when I am depressed  instead of sleeping to escape the pain, I draw color, write  or make a collage. In the end what could have ended in tragedy, opened my eyes and helped me a great deal. I still battle with depression and at times fall into a deep black hole but I always manage to pull myself out of it.

I honestly believe that since losing my adrenal glands I have become a different person. My emotions are intensified, I get stressed and sick easily and am quick to anger. It has definitely taken some time to get use to. Istill have to see the doctor regularly to monitor my meds and will be on medication for the rest of my life. I have hypoglycemia and Addison’s disease which so far only affects my skin pigmentation and gives me a year round tan. All of that is nothing compared to what I was dealing with when I had cushing’s. Having the disease strangely somehow has made me a better person. I am not quick to judge a book by its cover and really truly care for people. In fact, after all the time i spent in the hospital I am now back in school to become a nurse.

So remember that what ever you are facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believing.

Update 11/4/2013

In fact, after having completed my Degree in journalism I am now going back to school to become a nurse. After my experience I want nothing more than to help people who are sick. Just remember that what ever you’re facing, whether you have been diagnosed or are trying to get diagnosed, never give up. Stay strong, keep praying and believe you will be cured.

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Elaine, Pituitary Bio (Golden Oldie)

October 27, 2025

MaryO Empty Sella, Golden Oldies, Hypothyroidism, Other Diagnosis, Pituitary , , , , , Leave a comment

golden-oldie

 

I am 51. I was diagnosed hypothroid 25 years ago.

I was diagnosed with empty sella this year – by a neurologist analyzing my migraine headaches. He has ordered a prolactin test which I will have done when I see an endocrinologist in a about a month.

My weight had been pretty stable for years, now I seem to be gaining steadily and my breast are getting huge … I know … but it’s not funny to me because I can’t wear most of my clothes any more.

Also I am having anxiety attacks, my speech and vocabulary seem to be affected, my ankles are swollen. My internist has been attentive to my concerns and has been providing referrals to specialists. I feel as though I am losing my mind, my thinking is not sharp and I feel like crying all the time.

What happened, where is the real me? … and is this Cushing’s or something else?

 

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Ren, Undiagnosed Bio

October 24, 2025

MaryO Bipolar, Other Diagnosis, Undiagnosed , , , , , , , , 6 Comments

 

Hi there. 27 year old female, never had kids. It’s been an awfully long couple years and I’ve been researching and reading all you lovely people’s bios on pituitary tumours, Cushing’s disease and Acromegaly for about that long.

My symptoms onset at a time where my lifestyle was out of control. I was drinking heavily, using drugs and didn’t have a care in the world. Or so I thought. At the time of my heaviest use (cocaine) I started having strange laundry list of symptoms.

Pressure headaches
Pain in my abdomen
Acid Reflux
Excess hair growth (abdominal, face)
Purple stretch marks on my abdomen
Weight gain of approximately 30lbs in a month (distributed in only my trunk/abdomen)
Swelling of arms, face (around eyes too) sore jaw, enlarged tongue (ridges on the sides, from my teeth)
Swelling of hands, feet & legs (increased foot size from size 7 to 8)
Exhaustion
Hair loss on scalp
Itchy, sensitive skin that looks very thin (see-through almost, blue veins very prominent all over body) skin redness as well, large pores. Dull eyes.
Fatty deposit on the back of my neck
Collar bones no longer visible
Diagnosed with anxiety, bipolar disorder and ADHD
Memory loss, brain fog
Irregular menstrual cycles and increased pain
Tunnel vision at times and blurred vision. Sensitivity to sunlight.

At the time, I was so messed up my perception of reality was pretty skewed. The combination of my lifestyle and all the symptoms mentioned above motivated me to get clean (a year and a half so far woohoo!) I knew something was wrong and I needed to figure out my baseline without substance abuse to get to the bottom of it. At my lowest point I met up with my parents who I hadn’t seen in a month and they commented on how different I looked. One of my friends from narcotics anonymous hooked me up with a great physician as I didn’t have a family doctor. I was determined to get to the bottom of all this.

When meeting with my new family doctor (after getting sober) all of the focus was put onto my recovery and mental health. Seeing as she didn’t know me beforehand she didn’t know the petite, energetic person I used to be. I voiced my concern about my physical changes as well as my mental ones. I was referred to a psychologist. Diagnosed with bipolar disorder, depression and anxiety and prescribed meds for all of the above. The interesting thing is I didn’t have these problems before the physical symptoms onset. This was followed by countless ER visits for panic attacks, being dismissed countless times for strange physical symptoms that every medical professional attributed to my history of drug use and mental health. I believed them at the time. I was also diagnosed with TMJ disfunction and started seeing a chiropractor and massage therapist with no improvement.

The year that followed was the most challenging of my life. I thought I was going crazy. I tried eating an extremely healthy dairy free, wheat free, exercising constantly with no change. Seeing various doctors, explaining my symptoms only to get basic bloodwork done and sent on my way. It wasn’t until I decided to get off my psychiatric meds and focus on finding a diagnosis for my physical ailments that things started to change. I visited the ER and the doctor on call actually listened, he referred me to a rapid assessment internist. To date I have had a thyroid panel, hormone panel, all basic bloodwork, thyroid ultrasound, abdominal and pelvic ultrasound, cortisol 8am test, 24 hour urinary cortisol- all came back within normal range. I have been tested for angioedema, (neg) referred to an allergist, dermatologist and endocrinologist.

When I saw the endocrinologist he basically said “I see people with your symptoms all the time and there is never a diagnosis, so you’ll probably have to live with this” I was instantly worried and heartbroken with that response. He ordered some tests, ACTH, another 24 hour urine, T3 T4, DHEA-SO4. I’m waiting on these results now. Saw my internist again after the endocrinologist as he also ordered a prolactin and ACTH test which I hadn’t obtained the results from yet. ACTH was slightly elevated as well as prolactin. (High) not by very much. He ordered a CT scan of my head which I have to wait a month for (he said possible hyper prolactinoma of the pituitary). I’ve asked to have my growth hormone (IGF-1) levels checked, endo says “nope you don’t have Acromegaly”

I am trying to stay strong but I’m on the verge of losing home based my business as I’m a hairstylist and am starting to develop tremors in my hands, I can barely get up in the morning, I feel as though no one understands what I’m going through. I have a sense of urgency within me to find a diagnosis, my body is screaming at me that something is very wrong. My symptoms above increase in severity by the day. Have any of you diagnosed with Cushings out there experienced only slightly elevated ACTH results or prolatcin? I was also curious if anyone has an enlarged/ swollen tongue as a form an ACTH secreting tumour, I’ve tried to find information on it but only points to an acromegalic symptom. Something inside of me is telling me this is either pituitary or adrenal related. I can’t help but wonder if my drug use somehow stimulated my pituitary.

My personal life is non existent, I have isolated myself from my friends who no longer reach out or accept me (even though I have attempted to confide in them). I feel as though everyone but my family thinks I’m completely out to lunch. Just want to thank everyone on this site for sharing their stories, when I’m feeling hopeless and at a dead end, reading your bios are the only thing that is keeping me going and pushing for a diagnosis!

 

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Melissa C, Pituitary Bio

September 20, 2025

MaryO Golden Oldies, Pituitary, Pituitary Surgery, Treatments , , , , , , , , , , , , Leave a comment

A Golden Oldie

It started with severe skin acne on my back and arms. Then the bloating started. I went from one docter to the other. For months and months I was left undiagnosed. I gained so much weight, I went from a xs to a xl in a matter of 2 months.

My sugar levels was out of control and I could not concentrate on my studies. My hair started falling out and I got ugly stretch marks all over my hips and thighs.

I was finally diagnosed and had the tumar removed. Its a few weeks after surgery and I have started losing weight. I still feel ugly though, Im getting treated for low cortisol levels and I still have head aches.

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Patrick, Undiagnosed Bio

September 18, 2025

MaryO Golden Oldies, Male, Undiagnosed , , , , , , , , , , , , , , , , , , , , , 2 Comments

A Golden Oldie

Hello everyone,

My name is Patrick and I live in Montreal, Quebec, and I’m 35 years old. I’m not very good in english so my bio will be as short as possible. Sorry about that, and let’s hope that you will be able to read my bio without any problems.

I have found this web site (cushings-help.com) because I was doing some research a few weeks ago on the internet about hypogonadism. Back in April, my new GP (one of the many I’ve been seeing for the last 10 years) wanted to test my testosterone levels and finally find out that I was indeed suffering of hypogonadism. Based on those results, he did recommended to me a Testosterone Replacement Therapy for a few months which I did start immediately.

Three months after the beginning of the TRT, I’ve been tested again to see if any improvements were noticed but, surprisingly my testosterone levels were lower then before I’ve first started the TRT (twice as low to be precise).

So, he then ordered a CT Scan of my pituitary gland to make sure everything was okay with my pituitary gland. I received the results of the scan two weeks ago and, according to him, everything is “normal”. He suggested that I should try some testosterone injections insted of both gels I’ve tryed so far. During my last visit, I talked to him about some ressemblance between the symptoms of Cushing disease and my symptoms which are :

– Rapid weight gain (70 lb in 18 months mainly at the torso)
– Severe depression for the last 7 years at least
– Broken vertebrae in 2005 for no apparent reason
– Circadian rhythm completely out of whack (can’t sleep without  my 15 mg of Zopiclon each night for the last 5 years)
–  Suicidal thoughts (one attempt in 2004)
– Hypogonadism (total and biodisponible testosterone levels of 4.32 nmol/L after three months of TRT)
– LH and FSH deficiency
– Higher cortisol level at 4 pm than 8 am
– Stretch marks
– Changes of my skin (thinner and dryer, take longer to heel)
– Deacreased libido
– Lost of strength, body mass and stamina
– Joint pain (especially in the knees and hips)
– Headaches
– Congnitive difficulties
– etc. etc. etc.

He did try to reassure me that it wasn’t Cushing, but because I know that Cushing is often misdiagnosed, I ask him to see an endocrinologist anyway. Thankfully, I have an appointment next December 3rd.

I will try to update my profile as soon as I will have any further developments. If you have any questions or advices, please feel free to let me know.

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Voices from the Past: Beth, Undiagnosed Bio

August 20, 2025

MaryO Undiagnosed , , , , , , , , , , Leave a comment

I’m being tested for Cushing disease, after having some symptoms, one doctor says I don’t have it because the first Urine test is normal, but I’ve since done another urine test which is higher than the normal, I live in France the normal is 10-50 and I’m at 67 !

I’m still waiting in blood results, I’ve been suffering from pain behind my eyes like someone is pushing my eyes out , blurred vision, sinus like symptoms but not sinus infection, urine infection, skin infection, high blood pressure, fainting, headaches, headaches, extreme tiredness ! Etc etc

I’m worried that I will be pushed aside again and told it’s in my head.

I would love help in helping my doctor in the right direction… please , I’m becoming depressed and stressed that I don’t feel well and no one will help me.

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Melissa (Melissa), Suspected Pituitary Bio

August 9, 2025

MaryO Hypothyroidism, Other Diagnosis, PCOS, Pituitary, Undiagnosed , , , , , , , , , , , , , , , , , , , , Leave a comment

The pituitary gland

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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Voices from the Past: Lili, Pituitary Post-Op Update

July 5, 2025

MaryO Cancer, Pituitary, Pituitary Surgery, Thyroid, Treatments, Update , , , , , , , , , , , , , , , 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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