Hii my name is Sabrena and i am only 16 years old,
i realised i had all the symptoms of Cushings disease about a week ago. I started seeing the fact that i am constantly gaining weight, i went to see my doctor and i told her about it i told her i had all the symptoms of CD and i am constantly gaining weight each day i have stretch marks on my abodmen, my arms and back too, my periods dont come for about 3month sometimes more/ or less.
My doctor said she doesnt think i have CD because my face is Oval not Moon,
is this TRUE can someone not have cushing’s disease just because their face is Oval,
someone Help please as i have had these symptoms for a long time, and my doctor is putting aside the fact that it might be CD because i dont have a moon face she thinks it might be PCOS instead.
The problem is that PCOS doesnt cause weight gain and i am a person with a very small appetite and i am constantly gaining weight plus i already have the buffalo hump too.
My doctor still send me for a blood test but i am not sure whether that is enough to prove that i have Cushing’s disease.
I started having issues in my 30’s. I noticed my skin getting splotchy and my periods became horribly painful and irregular. I had migraines and started gaining weight. I went to my doctor who said I was just getting older (again 30ish). The weight kept creeping on, the periods got worse. Again I asked my doctor , again it’s part of aging. This went on for years. I finally changed doctors and ended up with a hysterectomy, the doctor assured me this would fix things. It didn’t.
A year after the hysterectomy I get my first ambulance ride from my doctors office to the ER. They thought it was my appendix . The ER found nothing so they sent me home. I have sever nausea I , body shaking chills and sever side pains. They sent me to a gastroenterologist who ran tons of test and found nothing. BUT as they were reviewing my latest test results by phone the mentioned that my adrenal cyst hadn’t grown any. I said what adrenal cyst? They said throne that was in the ER report. This had never been disclosed to me. They referred me to a urologist? I skipped the urologist and looked for a endocrinologist. My symptoms had multiplied in this time. I now had a fuzzy face, fuzzy vision, more weight and stomach tenderness to the point it hurt to wear some clothes.
I saw my endocrinologist and he ran a ton of test and came back with Cushings. I just finished my second MRI, this time they are looking for a pituitary tumor. I am waiting for results to see if I have the pituitary issue as well as the adrenal gland cyst. Apparently my adrenal cyst was large enough to cause cancer concerns , but luckily doesn’t act like cancer. Happy that! I am now in my 40’s and it has taken eight years to get a diagnosis or someone to take me seriously! So don’t take NO for an answer!
After six years of trying to get pregnant I finally decided to see an endocrinologist who suggested I might have a tumor on my adrenal glands and prescribed by bromocriptine to make it shrink. Two years later I was able to carry a pregnancy to term and delivered a healthy baby girl. After delivery I was never able to breast feed, kept gaining weight, had horrible stretch marks and odd bruising.
One year later I still had not had my period so I went to my OB-GYN. She shot me full of progesterone and estrogen, which did nothing so I went back to the endocrinologist. That day my BP was 173/121 and I weighed 180lbs (I’m 5’4″).
On first sight he diagnosed me with Cushing’s Syndrome and after a series of tests over many months it was confirmed.
On November 25, 2011 I had surgery to remove the macro adenoma that had completely consumed my pituitary gland. Ever since then my immune system has been weak and I’m tired all the time. Despite losing weight and exercising and eating right I just can’t seem to feel good.
I take .88 Levothyroxine, 2.5 prednisone, 2 doses of desmopressin and hormone replacement. Most days I wish I had never had the surgery. But, through it all I have done my best to live.
6 weeks after my surgery I went back to grad school and graduated on-time with honors, but since then I haven’t been able to keep a job outside of the home because I get sick if someone sneezes within 100 yards of me, and lets not even talk about the stomach bug.
I’ve been hospitalized twice and now carry injections of dexomethozine and anti-nausea meds with me everywhere I go. I’ve told my doctor about my fatigue and he refuses to prescribe Growth Hormone, but I’ve learned to suffer through it.
I’m Alicia and I’m 18. I’ve been diagnosed with PCOS but it does not explain all of my symptoms. I used to be super athletic and played 3 sports. I got my period at 13 and it was regular. However, I started losing my periods.
At first they would come every few months but have since stopped completely. I have lost a lot of weight, especially muscle. I had to stop playing soccer because my leg muscles were giving out. At the same time I got very bad acne and started sweating through all my clothes. My hair started falling out of my head. I ordered rogaine at age 15 because the bald spots on my head were so embarrassing.
I’ve been on 3 different acne medications and accutane. I have been working since I was 14 but I can no longer stand through my shifts even though I am only working 5 hours at a time. I feel like absolute crap and the worst part is I’m so weak. And my appearance has changed a lot. My face is round, red, and my eyelids are swollen. I don’t recognize myself and can’t stand to look in the mirror. My arms and legs are sticks and I can’t gain muscle no matter what I try. I get sick all the time, I’ve had strep twice, oral yeast infections, UTIS in the past couple months.
I went to an endocrinologist about a year ago who tested for a bunch of common hormone problems. All of my adrenal hormones were high. Testosterone, DHEA, androstenedione, and aldosterone. However, my cortisol levels were never tested. I was told I have PCOS but there were no cysts on my ovaries.
I found a new endocrinologist who mentioned testing my cortisol levels, but later decided not to because I am underweight and cushing’s usually causes weight gain. To me, it seems like I could have the atypical kind, which causes asthenia instead of weight gain.
Let me know if anyone has suggestions on what to do now, I would really appreciate it. I am still in high school and I’m genuinely worried for my future if I can’t figure this out.
Best friends Charly Clive and Ellen Robertson thought carefully about what to call the tumour that was growing in Charly’s brain.
The doctors had their own name for the golf-ball-sized growth sitting right behind Charly’s left eye — a pituitary adenoma — but the friends decided they needed something less scary. They flirted with calling it Terry Wogan (‘as in Pitui-Terry Wogan,’ says Ellen), but that didn’t seem quite right.
So Britney Spears fan Charly, then 23, suggested Britney. Bingo! Not only was she ‘iconic and fabulous’, but Britney was also one of life’s survivors. From then on, they were a threesome — Charly, Ellen and Britney the brain tumour — although Ellen is at pains to point out that this Britney was never a friend.
What a thing to have to deal with, so young. The pair, who met at school in rural Oxfordshire, are now actresses. Charly’s biggest role to date has been in the critically acclaimed 2019 Channel 4 series Pure, while Ellen starred in the Agatha Christie mini-series The Pale Horse.
But this week they appeared together in Britney, a BBC comedy based on the story of Charly’s brain tumour. The TV pilot (and yes, they are hoping for a full series) is an expansion of a sell-out stage show they performed at the Edinburgh Fringe in 2016.
The production is admittedly surreal. Viewers are led inside Charly’s brain and the show includes a scene where Charly dons an inflatable sumo-wrestler suit on the day of her diagnosis. Poetic licence? No, it really happened.
‘My dad’s mate had given him a sumo suit as a silly Christmas present and so, on Doomsday, we took photos of me in it.’
The tone was set for how these friends would deal with the biggest challenge of their lives: they would laugh through it, somehow.
As the women, now 28, point out, what was the alternative?
Charly says: ‘It was that thing of laughing at the monster so you are not scared of it. If you cry when do you stop? It was easier to make light of it.’
Their show is not really about a brain tumour. It’s a celebration of friendship. Ellen pretty much moved in with Charly’s family during this time (‘To be in place when I exploded, so she could pick up the debris,’ says Charly).
The pair live together today, finishing each other’s sentences as we speak on Zoom — and at one point both miming Charly’s brain surgery (with gruesome sound effects).
This sort of silliness rooted their friendship, which started at the age of 14 when they wrote their own plays (Finding Emo, anyone?) while at school together in Abingdon. Charly later moved to New York to study dramatic arts, and Ellen studied at Cambridge.
In 2015, Charly came home for a visit, and went to see her GP (played in the drama by Omid Djalili) about her lack of periods and a blind spot in her peripheral vision. An MRI scan showed a mass on her brain. ‘They said it had eroded the bone in my nose and was pressing on the optic nerve, and it was lucky we had caught it,’ she says. ‘The next step would have been discovering it because I’d gone blind.’
Even worse, the tumour was so close to her carotid artery that removal might kill her — and they still had no idea if it was cancerous. Into the breach stepped Ellen. ‘I saw it as my job to make her laugh, which is what I’d always done anyway,’ she says. They both talk of toppling into limbo, ‘almost like a fantasy world’, says Charly. ‘As I was going through the tests, we’d do impressions of the doctors and create our own scenarios.’
The friends talk about sitting up into the night, watching TV. There is a touching moment when Charly admits she was afraid to sleep, and Ellen knew it. ‘It’s hard when you are thinking “What if the tumour grows another inch in the night and I don’t wake up?” ’
Charly was operated on in March 2016, and Ellen remembers the anaesthetist confiding that Charly’s heart had stopped on the operating table.
‘He wasn’t the most tactful person we’ve ever met. He said “Oh my God, guys, she died”.’ Charly makes a jazz hands gesture. ‘And guess who is alive again?’ Even at that darkest moment, there were flashes of humour. Ellen laughs at the memory of the surgeon in his scrubs, with wellies on. ‘They had blood on them. I was transfixed. I wanted to ask “Is that Charly’s . . . brain blood?” ’
In the stage version of the show, the anaesthetist gets two full scenes. ‘He’s the heartthrob of the piece,’ says Charly. ‘A sexy rugger bloke who is crap at talking to people.’
The days that followed the surgery were hideous — and yet they, too, have been mined for comedy. Charly’s face was bandaged, ‘as if I’d had a Beverly Hills facelift’, and she was warned that she could not sneeze. ‘If I did, bits of my brain would come out my nose,’ she says.
Ellen read her extracts from Harry Potter but ‘made them smutty’, which confused the already confused Charly further. ‘I was drug-addled and not myself, and in the most bizarre pain, concentrated in my face’.
‘That week after the surgery was the worst part of all,’ says Ellen, suddenly serious. ‘She was behaving oddly and there was this unacknowledged fear: was this Charly for ever?’ Oh, the relief when the old Charly eventually re-emerged — albeit a more fragile, often tearful version.
It was Ellen who persuaded Charly to take their stage show about her illness public — and it went on to win much critical acclaim. ‘I wanted Charly to see it as something other than just this rubbish chapter that needed to be forgotten about,’ says Ellen.
For her part, Charly credits her best friend as her saviour: ‘I don’t know how I would have got through it all without Ellen.’
The good news is that Britney was not cancerous, although surgery did not obliterate her entirely. ‘She’s still there, but tiny — just a sludge. I’ve been told that she won’t grow though. If I ever do get another brain tumour, it won’t be Britney.’
Off they go again, imagining what is happening now inside Charly’s brain. ‘Britney is still in there, trying on outfits for a comeback tour, but it won’t happen,’ says Charly. Ellen nods. ‘It’s over,’ she says. ‘But she’s just left a pair of shoes behind.’
Britney is available to watch on BBC Three and BBC iPlayer
I was diagnosed with Cushing’s in 1986. I had all the symptoms. Weight gain, purple stretch marks, severe acne, hair all over the face, balding on the head, muscle weakness, depression, no periods, moon face, etc.
I had all the blood, urine tests. Scans, x-rays and even petrosal sinus sampling. These were inconclusive as to the source. The MRI of the pituitary showed swelling and near to the optic nerve, so the next step was pituitary surgery which was done in August 1986.
However the cortisol levels were still high. I still had Cushing’s. I was then given the choice of long term drug treatment while the source was located or to have an adrenalectomy. I was told that if I became pregnant on the drugs the pregnancy would not be able to continue because the effect of the drugs on a feotus wasn’t known. I felt that at the age of 24 I wanted my health back and the chance to have children if I was lucky enough. So in the October 1986 I had bilateral adrenalectomy through the back.
My Cushing’s was to all intents and purposes cured. Nearly 16 years later the ectopic source has never been found despite many more tests. It is still there because it still produces ACTH. The good side is now that I tan really easily which is amazing considering the British weather. I take hydrocortisone and fludrocortisone. I have never felt that I truly got my health back but am glad to still be here. I went on to have two lovely children, now aged 14 and 12. I was diagnosed with osteoporosis last year after years of back pain which is now being treated. I also had some problems last year and was diagnosed with angina and my steroids had to be increased due to a total lack of energy.
Up till now I have just about managed to hold down a full time job as a merchandiser for Hallmark Cards but have now taken the decision to go part-time which I am able to do with Hallmark. I have been married twice and am again a single parent. The men in my life could not cope with my health problems, so I figure I am better off with being on my own to bring up my kids. I think that’s about all. I would just like to say a huge thank-you to St. Bartolomews Hospital in London for all they have done for me over the years. Without their care and support I probably wouldn’t be here. p.s. I still suffer from depression but the old prozac sure helps.
Update: May, 2007
It is now 2007 and in 2006 they found my ectopic source in my appendix. It looked on the scan like it was in the central blood vessel but when they operated my appendix had flipped itself up and the tumour was sitting on the tip of it. After they tested it it was found to be a carcinoid tumour. Thankfully it was all taken away and the outcome was ok.
For the first time in over 20 years I can honestly say that i am much beter. for 20 years i felt ill and now i feel great. Obviously i still have bad days as I have no adrenal glands. But i will always be greatful for the immense help and support that i have received from professor Grossman and St. Bartholomews hospital in London.
WHEN Katelyn Bonacasa’s face got “red and burning hot” and became a “complete circle”, it was dismissed by doctors as “adult acne” and “postpartum changes”.
After being repeatedly fobbed off for months on end, she decided to do her own research – and was able to get to the bottom of what was really going on.
The first symptoms Katelyn, then 29, noticed was red, bumpy irritation across her chest.
A dermatologist said it had been hormonally triggered and gave her a wash and cream, which cleared it up.
But soon after that her face started to change.
She said: “Moon face was the first major symptom I noticed.
“My face lost all shape and became a complete circle. On top of that, it was red and burning hot all the time.”
Within weeks her hair began falling out and she lost nearly a third of it, while new hair sprouted across her face, from forehead to chin.
Acne erupted across her skin, her body bruised easily, and even the smallest cuts would take months to heal.
“I was literally unrecognisable to myself,” Katelyn admitted.
“I gained 30lbs so quickly, I couldn’t keep my eyes open from fatigue, but I also couldn’t sleep.
“I was depressed, anxious, angry, and constantly on edge. I felt like I was losing my mind.”
Her periods stopped, her thyroid became enlarged, and blood work showed her body wasn’t responding as it should to insulin.
Katelyn recalled: “The hardest part was watching how everything kept getting worse and just hoping it would be reversible one day.”
Yet for eight long months, doctors dismissed her insisting symptoms were “postpartum changes” or “normal for women”.
“I couldn’t even get a sentence out before my first endocrinologist interrupted me to say, ‘You’re fine’,” Katelyn claimed.
“He told me it was probably just postpartum. He ordered the most basic thyroid test, nothing comprehensive, and wrote in his notes that he had ‘no suspicion of anything’.”
Another doctor brushed her skin changes off as adult acne. An OB/GYN told her to try running on a treadmill.
“These things are normal as a woman,” one endocrinologist said flatly.
So Katelyn, from Long Island, New York, began doing her own research.
“I realised the only thing I hadn’t been tested for was Cushing’s disease,” she said.
When repeated blood tests showed cortisol levels three or four times higher than normal, and a urine test came back at 720 when the normal range is 3 to 45, her suspicions were confirmed.
“From the very first time I had blood work done, I never once had a normal cortisol reading,” she said.
“That’s when I knew it had to be Cushing’s.”
Cushing’s disease is caused by having too much of the hormone cortisol in your body and can be caused by a small, non-cancerous growth in the pituitary gland.
Katelyn was sure she finally had an answer and found a neurosurgeon who specialised in pituitary and skull base tumours.
“I asked for a consultation before I even had the MRI, because I was so sure this was what I had and I was right,” she said.
When an MRI confirmed a 1.5cm tumour, she sent her labs and scans to his office. Within eight weeks of that first phone call, she was in surgery.
Katelyn says: “I was the one who connected the dots and pushed for the right tests.
“I trusted myself, and that’s what saved me.”
Now 30, Katelyn has detailed her symptoms and repeated dismissals by doctors on TikTok, reaching thousands of people.
“Since posting my videos, I’ve had hundreds of people messaging me with questions about my journey,” she said.
“It makes me sad that people have to dig through external sources and fight so hard for answers when something as simple as a blood test could change everything.
“A 1.5cm pituitary tumour absolutely wrecked me. Nothing will humble you more than living as a version of yourself you don’t recognise, with zero control over it.
Hello my name is Jordiyn and i have not been definitively diagnosed with Cushing as of yet. Im not really quite sure where to start so ill start at the beginning.
At the age of 19 i started to notice that I was gaining weight very rapidly for no reason. I was very active and I weighed about 120 and then within about 6 months I gained 60 pounds. Then from there I started to gain more weight every month/year. All in all iv gain over 100 pounds in the last 4 years even though i eat pretty healthy and exercise.
With the excessive weight gain I started to notice these pinkish/purplish stretch marks on my hips, stomach,arms and thighs. Plus I gained a lot of weight in my face and my upper back. And then I started to notice that I was so tired and weak all the time.
I think the worst part has been the back pain and that I always feel like I need a nap even though I have a very hard time sleeping. My moods started to change dramatically. I get irritated very fast and I can just start crying and the most random things, I also have really bad anxiety so much so its crippling. My depression is threw the roof.
Last year in October I even tried to kill myself and then 4 months later I tried again. I do have Bipolar and i’m on medication but it feels like none of the medication are working. My psychiatrist just has no idea what is going on with me but he did tell me he thinks there’s something going on that doesn’t relate to my bipolar.
Then last year in October I stopped having my period and this lasted until june of this year so about 9 months. In those 9 months I gain 25 pounds, I literally thought that I was pregnant but every test was negative. After tons of tests and blood work It later turned out that I have PSOD. While I was at my Gynecologist he told me that I look like someone who has Cushing’s and that i needed to talking to my primary care doctor and talk to her about it.
So as of now im waiting for my doctor to send me to an Endocrinologist. I am very nervous that I have Cushing’s. Last year while I was doing some research about all out my symptoms Cushing’s popped up and so I talked with my old doctor about it and all she did was dismiss it. So after I couldn’t get any doctor to listen to me I gave up. Then a doctor finally says to me you may have it and i feel like it a sign from God telling me that I maybe i do have Cushing’s.
I would love to make some friends and actually have someone to talk to about this. Ill keep everyone updated and I’ll also post some pictures too.
Amanda Paxton, aged 41. From Auckland, New Zealand. Grew up in California. Currently living in Doha, Qatar, Middle East. This is like speed dating :).
Skinny and healthy until my 20s, started gaining weight, it took 5 endocrinologists and 12 years of increasingly agressive symptons to find the tumour.
They kept telling me I had PCOS and needed to diet and exercise more – how often have we all heard that?? It was so frustrating. Countless trips to naturopaths and kineisologists and chinese herbal doctors and nutritionalists and dieticians and weight management specialists. Countless diets – South Beach, Atkins, Dukan, Weight Watchers.
Found the tumour just before my 35th birthday. Successfully removed it (biggest one the neurosurgeon had seen) transphennoidally. Had less than a year on synthetic steroids – hydrocortisone. Periods returned – have had 2 beautiful daughters post surgery and one beautiful daughter pre surgery.
We now think there is another tumour as symptons have returned. Unexplained weight gain, no loss with diet and exercise, hair falling out. Should have test results in a couple of weeks.
I have an amazing life with a great family and I am really healthy, except for weighing 100 kilos. My biggest concern is not being here for my family or developing diabetes or heart disease esp with the weight.
I will keep you posted. Nice to meet you. Would love to hear from anyone who has had 2+ surgeries with any advice.
Im currently 24. In 2008 I was diagnosed with PCOS because of my very absent periods, an ovary full of cysts and acne. At that moment the gyno only gave me contraceptive pills.
In 2013 another gyno started giving me also metformin 2x500mg. Also because all these years my cholesterol and triglicerides were always high even though I have been vegan and vegetarian for over 7 years.
In 2010 I fractured one ankle and in 2014 I fractured the other ankle and Ive had multiple surgeries to try to fix that. Ive had continuous weight gain all these years even though I watch my diet and I exercise all the time.
I recently asked my GP to test for cortisol, also because now I’ve been almost a year without any libido. It turned out that my AM cortisol was high, and she repeated it a month later and it came out even higher. Now she referred me to an endocrinologist.
I have the appointment with the endocrinologist in three weeks. Im very nervous about this appointment, and I really just want to figure out what is wrong with my body. Wish me luck 🙂
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