Annie, Child With Pituitary Cushing’s

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We’re sharing the story of Annie, who was treated at Eunice Kennedy Shriver National Institute of Child Health and Human Development for Cushing Syndrome.

Thanks to the incredible doctors at NICHD & The NIH Clinical Center, she underwent an extremely successful clinical trial and surgery and is now thriving like a child should.

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Cyndi K (What Now?) Undiagnosed Bio

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So – 55 years of age and it has taken me ….4 years to actually get to this point, but I suspect if diagnoses is confirmed that its been more like 10 years since the first symptom.

I am tired, kind of freaked out right now and alone. I do not have monetary resources and looks like my job is about to bust – so there goes insurance.

I am scared, lonely, and in pain. I have had emotional loss after emotional loss for the last 8 years and feel so stressed out at this point I am having “Hypertension Episodes” every other day for the last week. I ache.

I do not know how to eat this elephant – okay so I know that I have to write this journey but I will have to come back to this.

MaryO’Note:  Cyndi says also “In the process of discovery – all symptoms check marked. CT Scan completed 2 days ago – waiting with anxiety for results of blood work and scans.”

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Woman with hump on her neck diagnosed herself with Cushing’s disease

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Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012

A woman who lived with unexplained weight gain and debilitating symptoms is finally getting her life back after diagnosing herself with a rare hormonal condition.

Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012. She consulted doctors, but they were unable to identify the cause.

As time went on, the music consultant and video director,from Santa Fe, New Mexico, noticed that her hair was falling out, her skin bruised to the touch, her face was increasingly round, and her bones were becoming more fragile, with her foot breaking unexpectedly.

Her anxiety increased, and Jennifer, who also suffered from debilitating migraines, consulted her doctors again. Experts told her she might have a thyroid problem, bad genes or the start of osteoporosis.

‘I was training for an athletic event and started noticing that I was gaining weight, not losing it. I was losing muscle, not gaining it,’ Jennifer said, recounting her symptoms. ‘Shortly after that my blood pressure shot up through the roof.

‘My face was taking on a moon shape, very round and chubby. My anxiety was so high. Unbelievable migraines. I’d explain all these things to doctors for years and nobody would listen to me.

‘They said I may have a thyroid problem, or I may be getting osteoporosis, or I just had bad family genes and I would have to struggle to stay a good weight. But none of it made sense. I was even referred to a therapist because they said I was making up too many symptoms to make sense.’

To Jennifer, none of these explanations seemed plausible because she was working out twice a day and eating a vegan diet.

It wasn’t until she noticed a hump growing on the back of her neck, known as buffalo neck, that she googled her symptoms and found they matched those of Cushing’s disease.

Jennifer had always thought the bump was due to her ‘terrible posture’, but she discovered the hump was in fact a symptom of the condition.

‘One night I was looking at it and I was so disgusted so I googled the words “fat on back of neck”, and this thing called buffalo neck came up,’ she said. ‘From there, everything unfolded. I found Cushing’s disease and it was every symptom I had to a T, everything down to my foot breaking out of nowhere.

‘I took this information to my doctor and he was the only one who listened to me. He helped me and the rest is history. He himself was amazed I diagnosed myself with such a rare disease.

‘In my best description I would say Cushing’s slowly attacks different areas of your body. You literally experience pain and symptoms from head to toe, and it felt like each week I was waking up to something new.

‘I was able to maintain a somewhat tolerable weight before this because I became obsessed with working out and eating healthy because all this time I just thought I couldn’t lose weight. My doctors mentioned that if I hadn’t done all of this activity then I would have been in much worse shape. I’d easily be over 200 pounds, may have diabetes, osteoporosis, the list goes on.’

Cushing’s disease develops when the body makes too much cortisol. The condition often develops as a side effect of treatments for inflammation and autoimmune conditions, but can also develop as a result of a tumor inside one of the body’s glands.

The main treatment is to stop taking the medication causing it or to remove the tumor. If left untreated, the condition can cause high blood pressure, which can lead to heart attacks and strokes. It affects about one in 50,000 people.

Jennifer found out she had a tumor on her pituitary gland that caused the body to overproduce cortisol.

Thanks to her active lifestyle, Jennifer’s weight gain, which saw her going from 105 pounds to 145 pounds was not as significant as it could have been.

Jennifer had surgery in August last year to remove the tumor on her pituitary gland and has been rebuilding her life ever since.

For Jennifer, recovery has been more difficult than living with the condition itself. She sometimes struggles to get out of bed as her body adjusts to producing less cortisol, meaning she feels less energetic.

However, her symptoms started to disappear almost instantly after the operation.

‘After surgery my symptoms quickly started to disappear like rapid fire. It was crazy,’ she said. ‘My weight dropped. I stopped bruising. The hump on my neck went down. My bones healed. My hair grew back. My face returned to its normal shape, and the best part, my blood pressure returned to normal.

‘My friends and family are amazed. Every time I see someone new they say I look like a completely different person.

‘Recovery is hard. I’m still going through it. Believe it or not it’s been harder than the actual disease. When your body is used to producing so much cortisol to all the sudden be producing nothing, your body crashes.

‘Some days it’s hard for me to get out of bed and move, I’m tired all the time and have zero energy. I’m only able to walk at the gym maybe two days a week. I’m currently on cortisol replacements so that my body levels out. Every two weeks I reduce my medication because the goal is to be completely off it and have a normal functioning pituitary gland.

‘However, every time I reduce my body crashes all over again, so it’s like a never-ending cycle. But I know that someday it will get better so I’m getting through it.’

Jennifer, who has been charting her progress on Instagram, shared her advice to others who might be suffering from similar conditions.

‘Never give up trying to find an answer and push your doctors to listen to you,’ she said.

‘If I hadn’t discovered this on my own I’d probably still be suffering.’

Read more:http://www.dailymail.co.uk/femail/article-5450135/Woman-diagnoses-rare-hormonal-condition.html

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Zoe, Pituitary Video

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Zoe shares her experience of living with Cushing’s disease, a rare condition that develops when your body produces too much of the hormone cortisol.

The commonest cause of spontaneous Cushing’s disease is a small benign tumour in the pituitary gland. Symptoms usually develop gradually and so the diagnosis may not be clear for some time.

Watch and share Zoe’s story to raise awareness of this rare condition.


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Ashley D, Possible Familial Cushing’s Bio

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Hi all, I am Ashley.

My mother has Cushing’s and I have just found out I have high cortisol levels. I am nervous about this but if my mother can make it through this so can I.

I am 30 years old and one of my biggest problems is my children are too young to understand what is going on.

I am glad that I have my mom who has already been through this before, so she will understand everything.

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Mika, Undiagnosed Bio

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I’m 16, going on 17… and I think I’m close to being diagnosed with Cushings. Quite frankly its scaring me so I’ll just do my best to get my story out there.

I’ve always kind of been on the heavier side compared to other people my age, even when I was really little. However, my weight has shot up from 60 kg to about 110 kg in 2-4 years, and my already awful confidence is basically shattered.

When I got my growth spurt I got severe stretch marks, but I thought it was nothing, and my parents attributed it to me growing so quickly or something along those lines.

I’m in constant pain, I’ve barely been to school since September 2016. I can barely move half the time due to severe exhaustion and pain, I fear for my future.

We originally thought all the pain was from gluten intolerance, which I was diagnosed with, late 2015. We completely cut gluten out of my diet, but instead of getting better, my symptoms got worse. The exhaustion lead to a diagnosis of chronic fatigue in mid 2016.

On a whim I’m guessing, my doctor ordered tests for ACTH when he got told of my worsening symptoms. It was much higher than it should’ve been, and I got forwarded to an endocrinologist, more tests, ect… I need to go back in a few days for the results, I’m becoming more and more nervous the more I wait.

My already bad mental health has taken a hit, as well. I was never really mentally okay due to a horrible string of things happening to me in my childhood, but when this popped up my illnesses got 10x worse, to the point I’ve harmed myself and attempted suicide. Even when I feel okay enough physically, I can’t go outside without being scared something will happen to me or that everyone is judging me for how I look. I was on medication for depression, but I was able to function even less when I was on it, so I was taken off of it. I have depression, anxiety, PTSD, and other disorders which have been diagnosed and they’ve all worsened in some way.

My schooling has taken an even bigger hit, I can’t think right due to disturbed sleep, general tiredness and headaches. I used to be a fairly good student and before I left, my grades had dropped significantly, my teachers and peers were looking down on me for how far I had fallen.

I used to constantly blame myself for my weight, I’ve hated it since I was very little, so at least this gives me a small bit of relief that its not completely my fault.

I just want to get my life back, I have my whole life ahead of me, but my teenage years are basically being stolen from me like I had my childhood stolen. While everyone else my age worries about tests I worry on if I can ever move out of my house or even walk to the shops again. It feels wrong and cruel. My symptoms have suddenly gotten much worse and I’ve developed new ones, and I honestly get more scared by the day.

Everyone else’s posts give me a tiny bit of hope for the future, I just hope I can one day live like everyone else does and not be weighed down completely by illnesses. It will be a slow road, but I just hope I can get there in the end.

Thank you for reading this to the end if you have, sorry if its just a jumble of words. ^^;


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Janice (Not So Cushie), Installment 4 of When Angels Knock


Read Installment 1 here

Read Installment 2 here

Read Installment 3 here

4th installment of



Janice Barrett


                        CHAPTER 2

     By late afternoon, I am taken out of lockdown and put into room 206, a semi-private room in the mental ward of the hospital. It looks like any other room in any hospital. I have no roommate and don’t like being isolated; it gives me more time to wonder about my wacko behaviour, speculating about whether mom’s disease is inherited. I have my mother’s colouring but my father’s features.  

     Alone in the room, alone in my thoughts, knowing what sent me other the edge, wondering what is happening to my life, I’m startled by a rap on the door. A nurse pokes her head into my room, “The Psychiatrist would like to see you. Follow me,” she says.

     I tag along watching her back not really paying attention to where I am going. There is no nameplate on the door we enter. It’s a stark office with a desk, three chairs and no personal family photographs, books or certificates. Nothing to signal ownership. A white-coated doctor sits behind a desk and looks at me, then drops his pen on his pad. He says thank you to the nurse who leaves, closing the door behind her. 

     He motions to the chair across from his desk. “Have a seat.”

     He is dark skinned and I wonder what nationality he is. Looking at his name badge doesn’t help. There is no way I can pronounce that name.

     “Do you have no any concerns?” he asks.

     I’m sure I must have looked at him shocked. Between his heavy accent and his words, I can’t understand what he’s said. And he’s looking at me like I’m slow, because he says again almost irritated, “Do you have no any concerns?”

     A few more now. They’re growing by the minute. Of course I’m concerned, I’m in a mental ward. Is that a question? How am I to answer that? It’s too general. I need a specific question; concerns about what? About my hospital stay, the room, the nurses, about my life and what part of it? 

     “I think I am paranoid schizophrenic like my mother.”

     There I did it. That’s a legitimate concern. Maybe it will be all right after all.

     “No any paranoid person would walk in my office and articulate that. They would try to hide it and that was the one thing you say first. So you no any paranoid.”

     Oh My God, I think I understand him. I don’t know if that makes things better or worse. And think of the eye doctor when he’s examining your eyes and asks better or worse and when it gets to that point where you just aren’t sure; that’s where I am. But his words are a relief. I’m not schizophrenic. I had worried for years that I would be like my mother. I trust what he says as truth. 

     The Psychiatrist picks up his pen again. “Do you know why you are here?”

     “I went crazy.”

     “You remember?”


     “What number medications did you take?”

     “Medications? I don’t know what you mean.”

     And then I recognize Bob’s gym bag on the corner of his desk. He stands up to place the bag between us on the desk.

     “You recognize this?” he asks.

     “Yes, it’s my husband Bob’s gym bag.”

     The Psychiatrist opens the bag. “Your husband find medications. Did you buy?”

     “Yes. They’re vitamin pills.”

      “They are 37 medications.” 

     When the vitamin pills are scattered between three bathrooms and kitchen cupboards, it doesn’t seem a lot until you see them dumped in one bag. Most of these bottles have been kicking around our house for years and are long expired, but getting rid of them is a hassle. You can’t flush them down the toilet or put them in the garbage. I always forget about them on hazardous waste day when I get rid of my paint cans.

     It’s a bag of failure, a multitude of good intentions, inspired by doctors on television, or magazine articles over the past ten years to eat right, exercise and supplement with vitamins. A reminder that, I can’t stick with any program.   

     The Psychiatrist stares into this bag without examining the bottles. He doesn’t even put his hand in the bag to move them around. He sits forward in his chair, looking at me, expecting me to come up with some revelation of some kind. They are frigging vitamin pills. What does he want from me? Yeah there are a bunch, but many of the newer bottles only have a few pills out of them, because when they make my stomach bloat, I stop taking them and try and find other ones which my body can tolerate. He looks at them as some kind of evidence; for what I can’t imagine.       

     “What number medications you take from the bag?”

     “I am not on any prescribed medications from my doctor. I took vitamin A, C, D, E, and the two homeopath liquids my Chiropractor gave me, a liver-detox and lymph something drops.”

     “Here 37 bottles your husband find and put in bag. You take each?”

     “No. Four vitamins and the homeopath stuff.”

     “How you are feeling now?”

     “There’s something physically wrong with me. It’s really serious. Whatever this thing is I have, it’s weird. I’m weak and my stomach bloats up huge.”

     The Psychiatrist lays his pen down, falling back into his chair.

     “I feel like I’m going to collapse, am weak all over and get tired out fast. My head is in a fog and I get confused with pressure in my head. Sometimes my words get mixed up and my eyes are gummy and blurry.”

     He stops looking at me, his eyes roaming the ceiling, his arms crossed. This Psychiatrist is just like my family doctor, Dr. Smith. Just like this Psychiatrist, Dr. Smith won’t even acknowledge that there’s something physically wrong with me. He looks at me like I’m fat and lazy. Like I won’t help myself by dieting and exercise.

     If it weren’t for Nurse Hill, I wouldn’t know what’s wrong with me. She’s the only one who listens and believes me.


     I’m at Dr. Smith’s office so much, I don’t even bother sorting through the magazines. I’ve read them all. Nurse Hill calls my name and takes me to a room she works out of.

     “Dr. Smith is on holidays so you will be seeing a locum doctor,” she says.

     I wonder what kind of a doctor that is; locum at least it isn’t “loco,” but I never question, it isn’t my nature.

     The nurse does the usual blood pressure and temperature.    

     “So how are you feeling?”

     “I’m really sick but I have so many weird symptoms.”

     “Like?” Nurse Hill takes out pen and paper and lists them as I speak. She believes what I’m telling her! I don’t have to convince her I’m sick. I can relax, reassured that she’ll help me.

     Without any hesitation, she says, “This sounds like Cushing’s Disease.”

     She taps diligently on her computer keyboard until the screen displays large letters reading: “Cushing’s Disease and Syndrome. “Yes, you have almost all the symptoms listed here. I’m going to recommend blood work be done to investigate this. The locum doctor will be in shortly,” and she leaves.

     I let out a big sigh. That it could be so easy after all these horrible months of suffering. Back and forth numerous times complaining about these same symptoms, with Dr. Smith dismissing them and me over and over again.

     I wait, hopeful. The locum doctor sits down. He examines me and questions me further and writes out a requisition form for me to take to the lab to have blood work done at eight AM, precisely.

     I’m the first one in line at the lab the next morning. It’s a quick procedure and I am out the door in no time and back home. I check many websites on the internet about Cushing’s disease. The more I read about it, the more certain I am I have it. These sites are describing what is happening to my body.


     And now here I am stuck in this hospital when I need to follow up on the blood work results. 

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