During pregnancy it’s expected for women to gain weight and sometimes struggle to lose it after giving birth.
Danielle Gselmann felt her health dramatically deteriorate five years ago, soon after she found out she was pregnant.
The Gold Coast mother had suddenly gained more than 20kg, found herself losing hair, constantly breaking bones and struggling to sleep.
Making matters worse, the young mother became severely depressed and noticed an unusual-looking ‘hump’ on her back.
Danielle went with her personal trainer husband Dean to get checked out and doctors assured her she was fine, claiming the symptoms were related to her pregnancy.
However, Dean was not convinced of the diagnosis because Danielle continued to eat healthy and work out but was still feeling terrible.
After piecing her symptoms together and doing extensive research, Dean believed Danielle was suffering from Cushing’s disease.
They went to a specialist to confirm Dean’s hunch and their worst fears were realised.
According to the Healthline, Cushing’s disease is caused by a tumour on the pituitary gland in the brain. This tumour then produces an abnormally high level of the hormone cortisol.
It is an extremely rare disease, affecting 10 to 15 people per million each year.
Speaking to Sunshine Coast Daily, Danielle said the disease affected her everyday life and took a dramatic toll on her family, causing her to miss out on watching her son grow.
‘Physically my body broke down…mentally I went numb,’ she said.
‘It affected everything…I missed so many moments because I can’t remember any of it’.
On July 19 Danielle had brain surgery and had the non-cancerous tumour successfully removed.
However, it will take two years for her pituitary gland to function on its own once again, and is warned she may continue to experience the harsh symptoms.
She was prescribed steroids to help manage the dramatic change her body has to cope with low cortisol levels, the publication reported.
The Gselmann’s now hope to raise awareness of the rare disease.
They have also launched a GoFundMe page requesting support for the family to look after Danielle as she recovers.
What can you do when the cure might be worse than the disease?
“Have you thought of losing some weight? This would most likely take care of the many complaints you have.” The all too eager yet condescending young intern continued despite my blank stare, “Have you had a sleep study done?”
How many times had I been in this situation? Change the doctor, but keep me there, in the crazy patient’s chair. “Well, the patient has five children, a long history of miscarriages, a fairly recent history of a traumatic abdominal hysterectomy… couple these with the recent death of her father to cancer and basically all normal testing… clearly she’s a depressed, middle aged woman hitting the Ben and Jerry’s a little too much and addicted to Lifetime movies.” Or something like that.
What’s worse than the tiny intern with a huge ego, was the troll under the bridge. I still had to face my PCP who listened to me a little less than a mother who’s heard “Mommy, mommy!” for the hundredth time in an hour, from her 3 year old.
For the better part of two years, I’d seen her for so many things. Each time I’d ask her why my bones were breaking so easily. I told her I was shrinking, to which she replied “It’s impossible to shrink an inch and a half in a year.” Then laughter. I’d ask her why the nausea & vomiting, low oxygen, and migraines were there… all of this was ignored and off to another specialist I’d go (for a similar experience), with more Prednisone in hand. When she didn’t see hardcore proof (i.e. a lab tests or a specialist’s report confirming the symptoms in front of her) the things simply did not exist, despite glaring symptoms.
Another specialist I’d seen did care and did see the disturbing, rapid transformation and accumulation of symptoms, so he sent me to my PCP for testing. I later found out that this specialist feared all along what I had. He had been warning me that Prednisone was dangerous and he hated it. I didn’t. I loved it. It was the only thing that relieved my severe neuropathy pain, the nausea, vomiting and migraines. Without it, I was in the E.R. at least once a week.
I suppose I could cut the PCP some slack and say that every doctor, when they themselves are the young intern, dream about the day when they can show off their seniority and knowledge (let’s not forget power) in front of another young intern. I could say this, but I won’t. Not when I know there are the most wise, sympathetic, world renowned and respected doctors, who’ve been practicing medicine longer than most interns have graced this earth, yet they treat the interns (and patients) as equals. They remain humble.
No, this PCP had no excuse for demeaning me for twenty minutes in front of this man. Alas! She did finally do her job and gave me an exam. It took her less than thirty seconds to blurt out “OMG Andrea! You have Cushing’s Syndrome!” All of the cool was gone. She fumbled with her papers, stuttered, murmured to herself… She was a mess.
She left the room for ten minutes and returned more composed and more… herself. “Andrea, I’m sure you’ve read about Cushing’s Syndrome on the internet.” This sentence was delivered with the same tone and sarcasm as a Disney villain about to pounce on an unsuspecting bunny (or other furry creature… did I mention the “fur” I had sprouted?). She continued, “You have every symptom of Cushing’s Syndrome. The buffalo hump is huge and classic.” She went on about my symptoms. All of which I’d been begging her to look at before this appointment.
By the end of the appointment, she had decided that she’d need to talk to my then rheumatologist; I’d need all sorts of testing, and foremost, “You HAVE to get off of that Prednisone Andrea!” Certainly she knew I wasn’t convinced that her prescriptions of Prednisone were somehow my fault, however the wee intern might have sucked that one up. Perhaps he believed it was my rheumatologist that prescribed all of it; he did do his part as well. They were both in it together.
I left the office miffed and confused. “Well,” I thought, “Let’s go home and see what this Cushing’s is, on the Internet. Probably some sort of psychosomatic disease where you think yourself into the side effects of Prednisone.”
At the point where I began my Internet search, I had changed from an active, really attractive (I can toot my horn, ’cause it ain’t so now) about to be 40 year-old, homeschooling mom of five beautiful children. I was in bed for 3 weeks prior to my PCP appointment. I found out later that my family thought that this was it, I was dying. Indeed, I was close to death and it’s a miracle that I didn’t die.
I had gained 40 lbs. for which easily 10 of it rested on the top of my back. The Buffalo Hump. The rest was hanging out in strange pockets of fat all over my middle and face. I was disoriented and in cold sweats all of the time. Everything hurt.
On the evening of that fateful Friday after my PCP appointment, I joined a Cushing’s support group online. It took me three weeks to compose my introduction post because I had not the energy, nor the wherewithal to finish it. In the meantime however, I found out enough about Steroid Induced Cushing’s Syndrome to know that I was in big trouble.
Every bad side effect one can get from steroid use, I am getting or have. What’s worse is, my adrenal glands have atrophied. They won’t wake up and naturally produce cortisol that our bodies vitally need. Every organ and gland in our body relies on the production of cortisol. When you have Cushing’s, you’re in a real pickle Fred.
With me, I’m continually in either Cushing’s mode or Addison’s mode. Two opposite diseases. You’d be surprised at how many people in the medical field do not understand this. Most disturbing is how many endocrinologists don’t understand it. My body is used to high levels of cortisol so when I try to wean off and my body gets stressed, sick, injured, needs surgery, etc., I go into adrenal insufficiency with the chance of adrenal crisis.
Ahh, adrenal crisis! My nemesis! Is it? Isn’t it? Hospital? Just a Prednisone Boost? These are questions I ask myself daily. I was very near dying during those few weeks before I saw my PCP, because my body was literally shutting down. Again, I’m still amazed that I didn’t die.
Right. I realized for me, a person with autoimmune disease, with all sorts of crazy symptoms, weaning down to a healthy level of cortisol was going to take another miracle. Those message boards? Every time I went to send a personal message to a member that I could relate to in experience, they were dead. Dead. Young women, neglected by so many doctors who thought that they too, were fat and depressed.
Monday came and I called my PCP as scheduled. When she answered the phone she acted as if she didn’t know why I was calling. Before a minute was up, I realized she was getting as far away from admitting I had Cushing’s Syndrome as she could. Both she and my rheumatologist had been prescribing me prednisone without any solid diagnosis (at that point). Basically the Prednisone was completely unwarranted. She told me to wean off of the Prednisone and “Um okay?” then let the silence hang there. I was speechless (and as you’re well aware of at this point, is pretty darn near an oxymoron).
I took it upon myself to see an endocrinologist, who I owe my life to. He ordered a bone density test, a bunch of labs, told me to get a medical alert bracelet ASAP and a whole lot more. He was shocked that none of this had been done.
The bone density test showed that my PCP was half right, I didn’t lose an inch and half off of my stature in less than a year, I had lost two and a half inches. I began a strong osteoporosis medication. A little later, I was put on 5 liters of oxygen at night and as needed during the day, a bi-pap machine and I learned more about cortisol stress doses and began searching for new doctors.
For the next year and a half, I would see a total of 3 more rheumatologists, 5 neurologists and 2 new PCP’s. I was admitted to the hospital too many times to count. I saw 5 more specialists, wasted tons of money, precious time and was demeaned further than I could have ever imagined coming from people who are supposed to “Do no harm.” at one of those big name clinics. Same thing: fat and CrAzY. At the end of it all, I had given up hope. I was on more Prednisone than when I had first seen my endocrinologist.
My teeth had begun rotting because of the calcium loss and my Sjogren’s Syndrome did not help matters there. I had 6 extractions in 3 months and was never able to get back down to the 10 mg. of Prednisone I had begun with. Stress, illness and then having to let the beautiful eyes of our children watch it all…too much.
I saw my endocrinologist for a checkup and he yelled at me. I yelled at him. We both yelled together and then he picked up the phone in front of me and called a few specialists (the most-awesome-est specialists the world has to offer) and made me appointments with them. These doctors graciously took me on as their patient and began working as a team with my endocrinologist to get me off of this Prednisone.
Well, it’s been 8 months since that loud, intense “time of fellowship” with my endocrinologist. Despite the fact that my teeth have deteriorated to the point where I will have them all extracted on Jan. 2, 2014 (Happy New Year!)… and I found out I have both thyroiditis and hyperparathyroidism and well, a bunch of other … stuff. I’m due to wean down to 9 mg. of Prednisone on Thanksgiving day! I’ve lost a little weight. There’s so much to be thankful for!
I have lost much, but what I’ve gained in return, I would never, ever give up. My faith and that of my family’s, has grown in ways that would never have happened had I not gotten this dreadful disease. I found many things. I have found that my husband really means it when he says that I’m beautiful. My children mean it… I have what many have deemed, “The Ugly Disease” yet I feel more beautiful than I ever have. I feel more blessed than I ever have. Most importantly, I remembered and again found my hope, through faith.
Faith is the essence of things hoped for, the evidence of things unseen. When those of us with serious and chronic illness, have no faith in a Hope, we are dead persons walking. Had my endocrinologist not been divinely appointed to verbally kick my butt, there’s no doubt in my mind that I would not be here trying to type this story of mine.
I can’t write nor say a thing without a moral. So the moral of my story is this: know who and what your hope is in. Know what the unseen things are and have fat faith. Take your illness and use it. Use your life! It’s beautiful!
this story is of my father. He was a or nurse on the transprt ship the usst sea barb during ww2, he graduated high school at age 16 and he then went to simpson college and had completed over two yrs when the war broke out. he signed up seeing how he was studing to be a doctor they signed him up in the corps.. after the war ended he went back to school. and then a year later signd up for the reserves. he continued to go to school ,work part time and work in the reerves. he and mom had two children by 1953 and he continued to do thest things. during this time some kids drove past him very fast and crashed their car. my dad getting off of the reserves and still being in uniform stopped a couple of the kids where dead but he did save the others by stabiliting them tell help arrived. and one young adult had major trama dad took his uniform jacket off and wrapped him up saving hs life tell help could get there. dad came home and mom seeing him covered in blood screamed until my dad calmed her and told her it was not his.
the year was 1957 my dad was starting to show signs of the disease he had lost an 1inch and half and at home he used to be a loving and decated husband and father but he was having more problems controling his emotions…he was in pain allot. the reserves still took my dad. and my dad had gooten a B/S degree in biology and education and he had then transfered to a methodist seminary to become a minister in 1950. by 1957 he had a nother degree and had completed chaplain school with thearmy reserves.
in 1961 i was born and the following spring he had a tabogoning accident which he could not move from and he wsa sent to fargo north dakota where it was discovered he had cushings as they called it from there he was sent to minnaplais/ minn where he stayed for 265 days. he had four major surgeries and 11 minor ones. trying to correct the symptoms of the disease. he had his gallbladder removed mar 1963, due to gallstones, he had his adrenal glands jan/1963 removed due to the high levles of hormons.abscess from ruptured divrticulum .tepary colestemy repai at age 39 “1963”his doctor was dr. Pelzi he suffered from osteoperosis with fractures of th spine/back. clavicle and several ribs more then once.
after a serious illness in apr 1962 he was sent to fargo with compressed fractures of the spine, ankle edema, weight gain and th fractures.at the minneapolis hosp he showed he was in the late stages of the disease he had osteoperosis, with mutliple compressions fractures on inttering the hosptial in dec 1962 they found he had diverticulitis of the sigmoid colon,5/9/63 with abscess they where drained at surgery 1/11/63 in mar at the same time they took his adrenal glands they took his gallbladder due to chronic chelecyelithiasishe was put on replacement hormone thearpy.he had high bllod pressure due to cushings. he then had to have more surgery to correct colon 5/14/1943 problem with aneatomeisi a tempary cocestomy was done and ended on 7/3/63 when the colestomy was closed and his large bowel was then re-anastemesed. on 7/5/1943 his family was called and told he was dying and there was nothing they could ddo to help him. mom rounded up us for kids and took us up to the hospital dads parents had gotten there thirty minutes before and they pronounced my dad dead when they arrived. when we got there mom called my dads name and he sat up in the bed and talked to her. he got out of the hospital in sept of 1963. the military retired him and the methodist church also did. he was walking with the add of churths and a cain. he also could not longer control his emotions.
when he had entered the hospital they had given him a year to live. or they gave him the option for them to experiment on him. due to his young age and him being a man they felt like the research could help allot of people. the studdied him to find where the disease can from and what it did to all the systems of his body. they gave him a pention and all the hospitals etc was free due to him being in the military but on inactive statis. my dad choice to help people. he was 39 years old and i was two years old.
when dad got out of the hospital he would be calm and kind and the next mintue a raging out of control person. even though he was very weak and never could walk well picking up his feet as he walked but when he got angry he had the strength of ten men. at the hospital they had told my mom about dads changed behavior and wanted to instational lize him from then on. but my mom refused feeling he needed to be at home with his family.
dad lived and went from job to job every few months to maybe lasting a a year here or there.due to his uncontrolable temper. we moved to wyo. and he continued to go to the va hospital in cheyenne wyo trying to get stabilized.we moved from town to town and in 1964 my brother was born. dad was very unstable and wwas in constant pain. in 1967 he almost beat my mom and little brother to death. the law came and took him to the edge of twon and told him not to come back. a year latr a few dyas before his and moms divorce would have been final he called mom and begged her to let him come home she refused and he said I will kill myself mom had heard that one many times before and she said go ahead. he did on thier 25 wedding aniversary. the next day.
I tell you this story to let you know of my dad who was a good healthy man, who was a good father and dad he had two B/S degrees and was in the ww2 and in the military almost 20 years. he became a minister and was a good one i heard. and then he got sick but instead of living without surgeryies etc he choose to help and let the doctors experiment on him so it would help other people. his body shows his scars and i have some pictuers of him. the atopsy is a mistory abut the man who claimed to have done it said even though daddy ws 46 years old he had the body of a 98 year old man. he was lost four inchs in hiegth and wher in the last stages of canser…the md also said he did not know how daddy had lived that long with all his health concorns… i have many documents that back up what i have said… i have discovered them doing genealogy research…just me ginger hawn cooper
my dads name was Charles Hamilton Hawn the fourth..my oldest brother says daddy is in th medical books som wof the first in treating this illness…from 1962-1967
I was officially diagnosed with Cushings in December 2009. I had done several urine test ,they were inconsistant, I had the saliva test done, I had symptoms of cushings, brittle bones, fractures, fatigue, brusing, round face, weight gain quickly and hard to lose, lose focus, depression and arthritis beginning in my hands. IN December 09 I had a Dex. test done which quickly confirmed that I had cushings.
It took three years to get a diagnosis. So, I had surgery scheduled for Feb 2, 2010. I had a Cyst that ruptured so that was important to come out the surgeon removed 20 % of my pitutary, but didn’t get the tumor.
A few weeks after that surgery I have massive bleeding out my nose and mouth, and was in out of the emergency room for a week having my nose packed four times. After a month and going back to my Endo. My endo. told me there was still a mass on my pitutary. I didn’t feel better I ached all over by the time I got home from work I was done for and could only go to bed.
In aug. 2010 I had the second surgery. the plan was to remove the mass on the left side of my pitutary if my cortisol level did not go down the day after surgery the surgeon would take me back in to remove the right side of my pitutary. Thank goodness after the blood work my cortosol was .6 so there was no need for a second surgery ( or third) I am now 4 month post surgery.
I am now taking 30 mg of hydrocortosol a day. My joints ache, I get fatigued around 1:00 and lose focus. I get very depressed some days and can do nothing. I am 46 years old and have a 19 year old son and 15 year old daughter, My husband is very supportive.
I feel so guilty for having this, people don’t understand how horrible I feel some days, just because the tumor is gone doesn’t mean I feel better. Not losing much weight yet which is frustrating. but exercising when I can.
August 31st, 2010, I had a macroadenomas pituitary removed transsphenoidally by Sandeep Kunwar, MD at UCSF.
I displayed all the typical symptoms for years, but was not “officially” diagnosed until I developed pathological bone fractures. Even all the fractures were not recognized until a full body scan showed the multitude of fractures. I feel, with time, I do feel much better. My body will, of course, never be the same.
The most disturbing aspect for me at this point is memory loss and the inability to form words. I know words exist for what I’m trying to say… but I can’t remember what they are. And my short term memory is a constant problem.
I would love to know if anyone else is having these same issues. And anything else post surgery. It is so hard to stuggle with these memory issues with any social situation !!
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