I’ve been looking at this board for a little while as my 17 year old daughter developed a buffalo hump last November. She’s not overweight at all but does carry a lot more weight than the rest of our family around her middle and chest. She’s a different build entirely. Her arms, legs and hips are relatively skinny in comparison to her mid section, though she does have very long legs so perhaps that’s natural too. She’s tried to tone up but the weight does not come off easily.
The hump looks weird! It sticks out a lot. Her neck used to be flat/straight down. I’ve looked at old photos to compare.
I have 3 other children, a 21 year old son who recently discovered he has fused cervical vertebrae in his neck which has been the source of his pain for the past few years (there since birth apparently), a 14 year old daughter who is healthy and a 12 year old son who was diagnosed with Leukaemia last August (he’s doing very well)
My daughter’s been referred to a plastic surgeon for hump removal since it causes her pain and looks ugly. At first we were told it was a lipoma, nothing to worry about, but the plastic surgeon wanted to check with a senior doctor since it was not just a lipoma but a buffalo hump. I’m waiting for an appointment to hear the outcome of her enquiry to the senior doctor but I spoke to her secretary the other day and apparently they are not worried about it. An MRI has shown that it is indeed a fatty lump.
She’s had no blood tests or any tests at all. She does not take any kind of steroid medication.
Her symptoms are:
the hump
daily headaches
severe anxiety
occasional exhaustion
occasional throbbing/aching in or around the hump
weight gain around her stomach/chest
She does not have:
thinning skin
stretch marks
excessive thirst
excessive hairyness
I’m worried since two of my other children have recently been diagnosed with quite rare conditions. Normally I would say the chances are that it’s a fattty lump that just happened to appear there, liposuction it off, job done. However the odds have not been in my favour this past year! What if she does have a tumour somewhere? that’s my worry and things are moving too slowly for my liking. Next appt with plastic surgeon is 24th April.
I will post some photos of her and maybe some of you can tell me what you think. I can’t see any fat pads at the front but I’m not entirely sure what I’m looking for.
I’ve made an appt with my GP for 21st March to ask him to refer her for tests.
I was diagnosed with Cushing’s Disease in September 2012. I started my search for a diagnosis back in March.
So here is how my story goes… in January of 2012, I decided that i was going to change my diet and exercise. I had weight to lose from a previous pregnancy. I began working with a nutrionist and personal trainer. I spent a lot of time working out and logging everything that went into my mouth. I even tracked my water intake. It became very obvious that for a hard as I was working that something was wrong. i was gaining weight instead of losing. I was also feeling very run down. I had also started noticing that I did not have very many patience for much of anything and I felt very uptight about silly stuff. I decided to go have my hormones checked.
At first the doctor told me that I was extremely deficiet on vitamin D and needed to drink a lot more water. He said we need to run more tests. He did a salivary test and some bloodwork to check my corisol levels. On my follow up with him he said that i had very high cortisol levels and wanted to run more test. He then went on vacation for a few weeks. I was unable to get answers from his nurse and then he was so behind when he came back that i could never get an appointment.
I started researching on the interenet about high cortisol levels. Everything that I was reading sounded like me. Weight gain (i had gained 100 lb), exhaustion, stretch marks, blurred vision, high blood pressure, water retention, etc. I found another endocrinologist and made an appointment. I told him all my symptoms and what I felt was wrong with me. He asked me what i wanted him to do. I suggested some of the tests that I had read about because I thought i might have cushings and he said, “ok, let’s get started but, cushings is very rare and I doubt that is what is going on”.
After running blood work, 24 urine test, plus many more test, he told me that I had Cushing’s Syndrome. He indicated that this was very rare and that he had not seen but one case before. He ordered an MRI. The radiologist that read my MRI said that he did not see a tumor. However, he did say that he saw “sinus disease”. Now I have never hear of that so i questioned it. I was told that I would need to go to a ENT doctor for learn more about that.
The endo doc wanted to proceed with the IPSS test. I keep studying on the interenet about the disease and all the testing. I even watched a few pituitary surgeries. I just felt like I need to know everything possible besides, I could not sleep so this was a great way to spend hours. I also kept reading all that I could on this site as well. I met with a local neurosurgeon and he scheduled the IPSS test. I asked him about how we would proceed if my test results showed positive for a pit tumor. I was basically told since no tumor was seen in my MRI that the IPSS test would help them to decided which side of my pit they would take. I was totally not comfortable with just losing part of my master gland. I kept my scheduled test but started to research experts in cushing’s. Then I researched which were covered by my insurance.
In the meantime, I kept the appointment for the IPSS since I didnt want to lose any time. I checked into the hospital and got prepped for my test only to have the doctor come in to tell me that we would not be doing the procedure because the company that made the medications used for testing no longer was making the mediation. Now then, how do you not know this before you prep someone for the procedure?!?! I told the doctor that there were other hospital that were treating cushing patients and were performing this test. I had been reading about them on the boards. He told me that there was not anyone in the US that had the meds. That was when I really knew that I was going to have to leave my state to get treatment.
I called my endo and explained what had happend and asked for a referral to MD Anderson in Houston, TX. I also went online and did a self referral. I just kept following up with them. They have a pituitary tumor board that reviews cases. My case was approved and I had my first appointment in Sept 2011. I spent on day running tests, having an MRI and meeting with the a new endo.
Within 48 hours, he confirmed that I did have cushing’s disease and showed me the tumor on my pituitary. In November 2011, I underwent transphenoidal pit surgery. An 8mm tumor was removed. There was some concern because the tumor was right up against my cavernous sinus cavity. This is where your carotid artery is and the surgeon did not want to get close to this artery.
Unfortunalely, I did not experince a “crash” after surgery. My levels did indicate they were in the normal range so the doctors sent me home with a perscription of hydrocortisone.
I had been sick for eight years before I finally got diagnosed with Cushings disease. My daughter went online and punched in hump on back and found out about Cushings disease. Then she went to sites like this one and found out what tests were necessary, which was very helpful, because not only did the endocrine doctor I saw think I didn’t have cushings disease, he also didn’t know what tests I needed. Thankfully he was on board with ordering the tests we asked him to order.
In 2008 I had pituitary surgery. I went on steroids afterwards for over a year. I lost all of the weight I had gained. My doctor told me I was cured. I kept telling him I was still exhausted and I was sick all of the time, but he wouldn’t listen and told me I was just depressed. Since then I have been to three other endocrine doctors. I have done a few 24hr. Urine collections and an 11 :00pm to 7am urine collection. I also did 3 saliva tests which were normal. The night time urine collection was on the “high side, but still within normal range “.
I had an MRI which didn’t show anything either. My doctor said he would do more 24 hrs urine collections in a couple of months. He said he would also do another MRI. I haven’t had any luck with the 24hr urine collections, so I am not expecting much. I had pretty much resigned myself to the fact that I will be fat and sick the rest of my life because I am so tired of doctors telling me they can’t find anything wrong with me.
I gained 60 lbs. In 6 months after my doctor told me I was cured. At the same time I started gaining the weight back, I started to get the same symptoms I had when I had Cushings disease. Since then my weight continued to climb until I started taking cortisol reducing supplements. Now I am still sick, but my weight has stayed the same. I have days where I am so sick I don’t want to get out of bed. Most of those days I have severe headaches and back aches. I get colds and flu a few times a month. People don’t think it’s the flu because I get it so often, but I have vomiting and body aches, just like I did when I had Cushings disease. I think I may have cyclical cushings because the tests aren’t showing anything. I am wondering if someone could recommend a test or tests that are good for cyclical cushings disease.
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. ^^;
I have suffered from severe asthma and environmental allergies since I was a young child. They used steroids as a way to help me breathe and stop hives.
As I got older, things just got worse. More steroids, more allergy medications, etc.
Two years ago I started losing energy, lacking the urge to eat, having daily headaches, gaining weight even with exercise and sleeping a lot. I thought it was stress as I was finishing my doctoral degree. My regular doctor tried everything.
Finally, she sent me to Mayo in Minnesota and they diagnosed me with exogenous Cushing’s. I had the buffalo hump, striae and moon face. They did not give me any medications but told me to stop taking steroids. Also, they found that my Vitamin D was a 9 so they loaded my Vitamin D. I slowly started to feel better for the first six months. I now seem to be going back downhill. I am exhausted all the time. I have no idea where to turn. I am starting here and also looking for a local endocrinologist, otherwise I may return to Mayo.
Jordy is a British man who has been dealing with Cushing’s and many surgeries.
He finds rollercoasters boring, barely broke a sweat zip-wiring off the Tyne bridge and even a parachute jump did not raise his heart rate.
Just a few years ago even the thought of daredevil exploits would have terrified him, but now Jordy Cernik is frightened of nothing.
While that might sound an ideal scenario, the 38-year-old’s new-found bravery is actually the unexpected side-effect of surgery for a rare condition.
Cushing’s Syndrome resulted in the dad-of-two having an operation to remove the gland which produces adrenalin, the hormone which makes us feel scared.
He says: “I would never have had the guts to do any of this, but now nothing fazes me. I’m up for anything – I’m even thinking about doing a wing-walk on a plane too.
“I nearly did a bungee jump a few years ago, but I just couldn’t do it.
“Now I just take whatever is thrown at me and if a challenge helps me raise money for charity, the more daring the better.”
Over the past four months he has completed the parachute jump and zip-wired from the top of Newcastle’s Tyne Bridge and now he is getting ready to complete the last of a trio of challenges – next month’s Bupa Great North Run.
“The doctors didn’t tell me this could be one of the side-effects of the operation,” says Jordy. “But then the condition is so rare I don’t think they know everything about Cushing’s yet.
“Doing the skydive was the ultimate test. I thought that if I was ever going to get scared again then that would be the moment.
“But as we took off in the plane I felt nothing, and when I edged towards the door to jump I felt nothing, and even when I leapt out and pulled my parachute, I didn’t feel scared at all.
“It can be quite frustrating as well though.
“The first time I realised I had changed was when I went on the rides at a theme park with my kids and I just didn’t feel a thing. I just sat there, bored.”
However, the last of his hat-trick of challenges, the Run, will require him to push through the ever-present pain which he has endured for years as a result of Cushing’s.
Britain’s biggest mass participation event, for which The Daily Mirror is a media partner, takes place over a 13.1 mile course from Newcastle to South Shields.
But the syndrome has left Jordy, from Jarrow, near Newcastle, with arthritis, back problems and brittle bones. Worse still, the absence of adrenalin means he now lacks one of the body’s natural painkillers.
“I’m always in pain,” he says. “I’ve just had to learn to zone it out day-to-day and I’m going to have to do that even more when I’m on the run.”
Cushing’s affects around one in 50,000 people in Britain.
It causes a malfunction of the adrenal and pituitary glands which means increased amounts of corticosteroids are produced – often leading to massive, irregular weight gain.
In just three years 5ft 8in Jordy ballooned from 11st 5lb to almost 17st.
While his limbs remained slim, the former Territorial Army recruit saw the pounds pile around the major organs in his torso and head.
“I went through years of hell and I can only describe it as living in someone else’s body,” says the part-time radio presenter and events host.
“I developed this big round moon face and really quite large man boobs, which was so embarrassing.
“But there was absolutely nothing I could do about it. I could go to the gym six days a week and still couldn’t lose any of the weight.
“One of the worst things was that people would stare.
“Sometimes they’d take the mickey – often to try and make me feel better, by making light of things – but it would almost always hurt my feelings.
“And my career as a presenter suffered. I tried to play up to the character of being a big, jolly chap but I always felt I was too fat for TV, which is what I would have liked to do a lot more of.”
But it was the effect on his home life with wife Tracy, 43, and daughters Aimee, seven, and four-year-old Eive that for him was far worse.
“I had other really difficult symptoms which included profuse sweating which meant I couldn’t even hold my kids without wrapping them in towels first,” he says.
“Anyone who has children knows how hard that is, not to be able to do normal things. I often used to be in tears.
“Another symptom was extreme grumpiness, so I would find myself suddenly getting really angry and just exploding at them, plus I was always too exhausted to play with them. It was terrible.”
Jordy believes he can trace his symptoms back 15 years although his Cushing’s was only diagnosed in 2005.
He had visited his local surgery with a string of complaints, but by chance saw a different doctor one day and the syndrome was diagnosed.
“I don’t have any ill-feeling about that,” he says, “because the syndrome can be tricky to spot, partly because it is so rare.”
He went on to have both his pituitary and adrenal glands removed but needed a total of seven operations between 2005 and 2010 and not all went smoothly.
During one to remove his pituitary gland, which is inside the skull, the lining of his brain burst due to the stress of repeated surgery.
And while removing a rib to access the adrenal gland in his torso, his lung was punctured.
That wasn’t the end of the complications. He later developed severe meningitis and ended up on a life-support machine.
“But I still consider myself lucky,” he says. “The doctors told me, ‘You died twice really, you shouldn’t even be here’.”
Things have begun to look up in the past few years, however. The Cushing’s is in remission and Jordy has lost four stone.
His life hasn’t returned to normal entirely – he still has to take 30 pills a day, a cocktail of painkillers and hormones, plus drugs to slow the corrosion of his bones.
He has also been diagnosed with another rare condition, sarcoidosis, which creates nodules of irregular cells in the body and can cause serious complications. He’s convinced he has always had it but it has lain dormant until his body was at its most vulnerable.
At present the nodules can only be found on his skin and he’s being monitored to ensure that it doesn’t spread to his internal organs.
Thanks to the surgery, his life has improved enormously since 2010.
In July he had a breast reduction op which not only improved his appearance but also removed the dangerous accumulation of fat around his heart.
Part of this new chapter involves taking part in the Great North Run and raising money for the Cash for Kids appeal run by his local radio station Metro Radio.
The appeal aims to help children and young people in the North East who are disabled or have special needs, or those who suffer from abuse or neglect.
Jordy’s fundraising goal is a relatively modest £1,000, but for him joining the half marathon’s 56,000 participants on September 15 will be as rewarding as hitting his target.
“I really don’t know if I’ll be able to complete the course.” he says. “But I’m looking forward to it and I’m going to give it my best shot.
“Not feeling fear may feel like the power of a superhero, but what I really need for the Great North Run is superhero strength.”
The Bupa Great North Run is Britain’s biggest mass participation event and is organised by Nova International.
It will include world class athletes Mo Farah, Haile Gebrselassie and Kenenisa Bekele – plus 56,000 other runners.
The event is live on BBC One on Sunday 15th September between 9.30am to 13.30
First of all – I have to excuse my language – I’m Swedish, and will not always be able to find the right words.
After several years of increasing symtoms some of which worsened severely a couple of months ago, I finally found “Cushings disease” and recognised most of the symtoms. I’ve suffered from severe depression and thereafter adrenal burnout, and have explained most of my problems from this point of view. It’s “only” stress related, I’ve thought to myself.
I’ve always been slender, but gained weight using antidepressives. After ending SSRI I managed to loose weight again (I love running, and exercised a lot!) But my face stayed round and my belly stayed big. (Today BMI 21 and look 7 months pregnant)
I’m very easily bruised since several years.
I wake up several times each night and it’s often very hard for my to fall asleep again.
I get easily exhausted, mentally and physically. I’ve got lowered simultan capacity, am sensitive to impressions (sounds and vision)
My skin is very dry and thin and looks like paper on the back of my hands and on my lower legs.
My cheeks are always red, as well as the front of my neck.
I’ve always had extremely low blood pressure, and now it was high (in the lower region)
Inflammations won’t heal. I’ve had stressfractures in my left foot twice the last couple of years.
My legs always hurt.
The last two months my strength has decreased a lot!
I’m always thirsty and pee a lot.
I live extremely healthy (Exercise, eat good, hardly any sugar, exercise bodyscan/meditation, minimum of alcohol – my day ends extremely early) – all in order to manage my part time job, and my two children who are in great need of me.
And now we’ve found that my cortisol is high (urine and blood), ACTH is high and I’ve been a patient for a couple of days for several bloodtests, another urinetest and dexamethasone-test. Tomorrow I’m scheduled for an MRI, and next week I’ll see a doctor to get the results.
It seems that I’ve got Cushings – and my first feeling was a sense of relief. All this suffering all these years, and I’ve always thought that I wasn’t trying hard enough. And the explanation was that something was growing in my head that they would be able to cut away. And the tumour is almost always benign.
But having read some stories on the internet I’m suddenly scared. I realize that you are in deeper need of writing if you don’t get well, but still I’m suddenly very scared.
If anyone out there is a “success” (when it comes to getting well again) please respond. I desperately need hope.
Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.
I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.
I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.
I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.
just found this sight looking for answers to a long list of problems and diagnosis.
I have battled years long of severe stress and well am trying to find out what happenned and how to get well again. I have menapausal estrogen issues not answered shoulder impingement problems and one dr suggested I had phase 3 exhaustion which led me to study on adrenials.
blood work has been done whichis showing elivated red blood cell counts my thyroid levels appear within the normal range but 30 yearrs ago i was treated for hyperthyroidism which even then i suspected was not the right gland. Im wondering if this elivated red blood count is yet another indicaation of this adrenial issue as dr after dr finds this that and the other and treats each as such.
im just learning about this condition an dwhere it appears i am fitting into it but what test will show if it is or isnt? its all very confusing.
i am 51 now and as i have said the last 5 years of my life have had supreme stress and conditions that have just led to exhaustion mental and memory failures pysical problems that obviously didnt happen overnight and now the red blood count in the picture……does that fit in here somewhere?
I am here because I believe my 26 year old daughter has cushings.
She went through puberty late, just as it started she had a strange episode where she couldn’t speak, walk and was confused. I took her to the ER, the ran different tests and sent us joke with b vitamins? Since that time (11 years ago) her behaviour has been bazaar, she had put on about 6 stone.
After the birth of her child 3 years ago she had gone a lot worse. Aggressive, numbness in both legs, depression, tingling in fingers, ties and around mouth, exhaustion, insomnia and the buffallo hump which she has had for years. I thought at first she had pernicious anemia but her b12 level is ok.
The haematologist is asking out gp to run tests he mentioned cortisol, I looked it up and couldn’t believe she has exactly the same symptoms, she has constant headaches and her legs are also covered in bruises because when she does eventually go to sleep she wakes up in another part of the house due to sleep walking.
She has just been given anti depressants and sleeping tablets which she does not take. I requested her medical records and went through them found out that she had lesions in her frontal lobe 11 years ago when they ran the tests. I also discovered that she had normal low TSH and very low t4 which points to the pituitary gland
Some days she feels ‘ok’ which is very rare. Most of the time she is suicidal and stressed. I’m waiting for her to be called for her cortisol tests, I just hope they are done at a time that she is going through her cycle.
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