I am 54 year old woman with no kids. I had a hysterectomy at age 44 and went through the change. I was slightly overweight at the time and went on a healthy weight loss programme over 5 years and got down to my goal weight. Life looking good.
Fast forward to 2019 and I got a very painful and swollen pituitary gland infection on the right side of my face. Admitted to hospital and administered 60mg Prednisone intravenously. Then prednisone for 1 week tablet form after I left the hospital. No actual tapering off, just a prescription of 20mg daily.
This when the problems started, after 2 weeks my moon face appeared, bloated and fatigued I went to my GP. He said Cushings probably.
2 years later I am 60lbs heavier, distinct lump at the base of my neck, fat on my upper arms and between my thighs, belly, chronic fatigue. The weight is extremely stubborn. My sex life is dead, my relationships are foundering and my depression and anxiety is managed by seclusion and sleeping.
I am desperate to find a solution, but fearful my search will tell me I am damaged and have a short life expectancy. So I came here perhaps to find support. Too many of the stories, sound just like me.
I am a 54-year-old woman who over the past two years has developed a buffalo hump and gained 60 pounds.
Initially, I had hair coming in heavily but now I seem to be losing it: my eyebrows, the hair on my forearms, facial hair and now the hair on my head. I hurt… A lot!
I have trouble sleeping, I am moody and I have no “absolute zero” interest in what was once a vibrant sex life. I’m confused and so done with doctors telling me I just need to lose weight.
My self-esteem has bottomed out at zero, going from my very active fitness oriented lifestyle to an often limping, painful, moon faced, overweight, buffalo humped middle-aged woman.
I am the mother of a 19 girl who is currently being evaluated for Cushing’s Syndrome/Disease. My daughter is in her first year of college and over the past eighteen months, she has gained close to 50 pounds. I have watched her struggle and we have even attended two military-style bootcamps for weight loss.
Despite eating healthy, during that five weeks, she gained 2 pounds. Her facial features are so distorted from her moonface appearance that she does not even look like herself. She has a Buffalo Hump and purple stretch marks on her rotund abdomen. She has almost no energy and when not in class, she is sleeping in her dorm. She has a brown stripe of skin in the crease of her neck which prompted her roommate to ask her if she had worn a necklace with copper in it. Her vision is poor and her periods are now very irregular. She has excessive thirst and urination.
About a year ago, she had her wisdom teeth extracted and ended up with a life-threatening infection which included a second surgery emergency surgery and she was placed on a ventilator in ICU for three days, due to the possibility of the infection (swelling) occluding her trachea. The doctors were so perplex how a healthy girl could have such a poor outcome from this surgery.
I looked up some of these symptoms and it seemed rather clear what she likely had. I took her to an internist and expressed my concern about Cushing’s when she was home for Christmas break. The physician ordered blood tests, including a CBC and metabolic panel, thyroid panel, and prolactin. She also ordered a 24 hour urine for Cortisol. Her CBC was normal as was the prolactin and thyroid. Her liver enzymes were elevated about three times normal. She then followed up with a Hepatits panel and an abdominal ultrasound, both of which were normal. The 24 hour urine Cortisol was elevated and we are now waiting on a referral to an endocrinologist.
My daughter’s university is about 350 miles from our home, therefore I requested the endocrinologist be in her college town. I plan on going there for her appointments and my husband and I have discussed moving there if necessary. She has a very kind roommate who is dependable and helpful. I still do not like her being so far away, knowing that she likely has a very serious condition. My daughter’s spirits remain high and I think she is looking forward to beginning treatment, whatever it may be, and feeling better. I know that the weight and the fatigue are the most troublesome for her. I appreciate this site which has allowed me to express my concerns to so many who have been there. God bless you all!
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
My wife Lynn (we are lesbian civil unioned partners in NJ) has been diagnosed with Cushing’s Syndrome (for the 2nd time in 4 years). I love her very much and would do anything to help her, but I don’t understand her condition fully.
She got Cushing’s Syndrome from abundant steroid injections due to a severe back injury and it has rendered her “comatose”. She has no energy, she sleeps all the time, and I miss her and am lonely when she is in this state, which is all the time.
Please help me to understand this better as I love her and want to help/comfort her and make her realize that I am there for the long haul, however long that is!!
My son is almost 16 years old and so sick he hardly gets out of bed anymore. Although no Dr.s believes me I do believe he has Cushings and the Dr.s can not give me any other idea’s of what is wrong with him only that he needs to lose weight and exercise more. My son is so tired of hearing this that at his last appointment with a specialist at Childrens Hospital of Philadelphia he left in tears and wants to know why no one is helping him. He is to the point where he doesn’t even want to go to the Dr.s anymore, he thinks it’s pointless. He has only had one 24hr Urine test which came back normal and an cortisol & ACTH test taken at 5pm and these were also within range. I am going to guess maybe things started at the age of 9 or 10 and progressively gotten worse.
His symptoms are as follows and the explained away answers from the Dr.s –
1. Headaches all day everyday – sometimes severe, sometimes just there and no amount of advil seems to take it away completely – Dr.s probably puberty and since he is a big kid take up to 4-advil every 4 hours.
2. Buffalo Hump – we brought him to the Dr. about 2-3yrs ago for this odd hump on the back of his neck – Dr.s it’s just a fat deposit – he just deposits fat in odd places
3. Red to purple stretch marks that fade and get brighter but never go away completely – they appear in masses on his sides, back, shoulders and stomach – Dr.s response although his stretch marks are quite impressive they are typical of what you would see in cushings they are not purple enough or wide enough.
4. Severe pain in back and knee (sometimes elbows) – he can’t even take a simple trip to the stores as it is to much for him to walk around – his is 15yrs old and is now asking me to get him a cane to help him get around. Dr.s response to the pain – must be growing pains (my son is 6’1″ and I was just told he is pretty much done growing)
5. He does not sleep at night, says can’t fall to sleep no matter how hard he tries and when he finally does fall asleep in the morning early hours he will sleep most of the day, then wake up still feeling tired. He told me it’s like his mind sleeps but his body doesn’t feel rested at all. Dr.s said he needs to stop video games and t.v. to hours before bed – these types of things stimulate the mind thats why he can’t sleep.
When the Dr.s were told the rest, they really didn’t say anything at all – below are the rest of his symptoms:
6. He is starving at night – he says he has to eat he is so hungry
7. Having a hard time remembering things and getting progressively worse
8. Losing his grip – he can barely right his name – when I ask him to squeeze my hand it hardly even hurts me now and he says when he tries to squeeze hard he gets this odd sensation up his arm and it feels really off .
9. Has a hard time sitting for an extended amount of time – this has caused him to miss the last 6 weeks of school – his says the pain in his back and sides are just to much to handle when trying to sit.
10. He has had numerous skin aliments, mouth sores
11. Always thirsty
12. Acanthosis Nigricans – back of neck, under arms, elbows
13. never a sick child until recently – strep throat, mono (which I was first told he didn’t have), normal colds now last for weeks with him where he never even got colds before.
14. slow healing of cuts and he scars horribly
I am sure there are other things but these are the first to come to the top of my head. His biggest complaint is the memory loss, lack of sleep and pain. I am scared for my son and do not understand how this is acceptable for anyone let alone a 15yr old. I am watching him get worse and watching his precious teenage years just pass right by him.
I’m new to cushings and just looking for some insight into this disease. I’m 67 yrs and for the last 15 yrs I have not felt good and problems getting worse with no explanations in the past. After discussing problems with my Dr I was tested twice for thyroid but tests came back normal.
I do have other problems due to surgeries in the past, I have adhesions, scar tissue etc. I am now type 2 diabetic since last 5 yrs.
I was admitted to hospital because of stomach pain in July this year, I had a cat scan which showed I had tumours on my adrenal glands. The left being the largest. I am waiting to see the endo surgeon in November but have just finished some tests I’ve blood, 12 hr and 24 hr urine specimen. No results as yet.
My symptoms are as follows.
Sweating mainly evening time around 9pm
Can’t sleep until 3am, but could easily sleep on afternoon if I allowed myself.
Changes in face. When I look in mirror I often think this does not look like me.
I have put weight on but not a lot. I have been noticing a lot of facial hair on my face.
I had very, very thick hair and it’s now extremely thin. I have a type of rash on my face which has got worse over the years. It seems like my legs and arms are much thinner than they used to be but my abdomen is getting larger, mainly my upper abdomen. I don’t have any stria but have similar marks on my legs especially around my knees. My skin marks easily. I also seem to have a small buffalo hump on my back. Seem to have brain fog but usually put that down to age. Feel tired all the time.
Some things I can maybe put down to age.
I would appreciate any comments from members. I will let you know when I get results.
Hi. For the last couple of years I have had different symptoms. I’m 45 and feel like I’m 70. I think it started about 3 years ago. I would break or fracture something and it would take forever to heal. I gained over 60 lbs. I’m always tired yet don’t sleep well. I look like I’m 9 months pregnant but skinny arms and legs. Stretch marks on body. Round red Face that constantly feels hot. My back has a hump and my neck has fat pads. Finally, prehypertension. I also have intense itching especially in a soecific area. Oh, let’s not forget anxiety and focus issues. .
I had enough. About 7 months ago I began going from doctor to doctor. Every test came back fine and they dismissed me. Finally, I went to an endo. She tested me for Cushings. I gad 5 tests and all came back positive. All this took time but I tried to be patient. I know this is horrible but I was actually happy to finally have an answer to my issues. I then had a CT scan and found an afonona in my left adrenal gland.
I had surgery a week ago today. I’ve heard so many different stories of figuring out if they have cushings but little about their recovery. I’m hoping to hear people’s recovery stories. I’m actually much better than I thought I’d be. I’m weak, still some pain at surgical sight, out of breath, and very emotional. Also, hard to do an intellectual activity before feeling overwhelmed.
Can you all share your journey? I’m taking 40 mg of hydrocortisone a day. I was wondering if anyone had itchiness as a symptom. Doctors have told me that they haven’t heard of that as a symptom of cushings. It is horrible with me and am hoping it will go away with this surgery. I feel like it has gotten better.
Looking forward to hearing about some recovery stories and feel free to ask me anything to help other understand what they are going through.
…I’d been feeling a little off colour and had put on a bit of weight so went to the doctor at the beginning of last year (2012). In September 2011 I’d been running and blacked out. Through the rest of the year even though I was careful about what I ate, was swimming 80 lengths of the pool everyday and running pretty regularly I was still gaining weight. It’s weird that I found it hard to climb the stairs at work because my thighs felt so weak but could still swim a couple of km. I found it difficult to sleep and bruised pretty easily.
It was a bit of a shock to be told I might have a very rare brain tumour releasing the hormone cortisol that affects 10 in a Million people. Things went downhill and Cushing’s Disease really started breaking apart my body. My muscles wasted and I carried on putting on fat. Joints skin and feet were all affected. I’ve heard Cushing’s Disease called the ugly disease so yep not great…
I recently completed a clinical trial at NIH because of an adrenal nodule. I also have hyperplasia of both adrenals.
Turns out I have primary hyperaldosteronism (which had previously been diagnosed) as well as elevated cortisol. I was told I don’t have Cushings but could develop it. Yet I do have unbelievably excessive sweating and have just begun to develop what I assume to be a buffalo hump–a lump at the top of my spine between my shoulders that is hard to the touch and painful.
My ability to handle stress is nearly nil; I sleep upward of twelve hours and more a day and yet get exhausted doing the littlest things. I’ve lost a lot of weight over the past two years because of nearly daily diarrhea–which I now believe may be caused by a deteriorating liver as I also have Heptatis C–and yet I have a fatty paunch which is beginning to show stretch marks I didn’t know I had.
My skin heals poorly and bruises very easily. I have splotchy skin, i..e, dark patches and totally pigment-less patches on my face. I was told my hypothalamus produces too much CRH which, in turn, triggers the ACTH to produce too much cortisol.
With two, possibly three, chronic conditions, I am beginning to worry about returning to work after my medical leave of absence ends this January.
I was on the pheochromocytoma support board until my diagnosis, and I know how helpful it was to have a group to turn to. I’m glad to see this one looks like a similarly supportive and informative group.
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