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.
FOR Irene Fox, everything seemed to go wrong all at once. It was 1999 and she thought her life was falling apart. She felt her relationships had deteriorated.
Her face and stomach became bloated. Meanwhile, her arms and legs became very thin. Her blood pressure was extremely high. The sunlight irritated her eyes.
One day the mother-of-two from Bray, Co Wicklow, lost the use of her leg. Then she started falling. “I was losing power in my arms and legs,” she recalled.
Irene was 47, so, she reasoned, maybe it was just the menopause. But she went to the doctor and found out that it wasn’t. She was sent to St Columcille’s Hospital in Loughlinstown for a battery of tests which went on for more than two years.
In 2002 Irene was diagnosed with Cushings Syndrome, following an MRI scan. It emerged that a tumour on her pituitary gland was causing an excess production of cortisol, the stress-relieving hormone. She had an operation in Beaumont Hospital in August 2003.
“Before the operation I couldn’t walk for more than a few stops before falling down,” she recalls.
Irene’s condition did not improve following the operation, however. She discovered she was unable to keep any food down. In October she collapsed and was brought back to Loughlinstown where she stayed until January 2004.
“I was in intensive care for two weeks and then in the general hospital for 10 weeks.”
Irene, now aged 59, was told she had to increase the amount of steroids she was on.
“I take hydrocortisone and I wear a hydrocortisone bracelet to inform people that I take it.”
These days the mood swings are gone and her eyesight is better. “I walk with a stick but I don’t fall any more — the symptoms were caused by the tumour on the pituitary gland. I’m told that it affects different people in different ways.”
There should be more public awareness about the pituitary gland and its functions, she says.
“I feel there should be more awareness of the pituitary gland and what can happen if anything goes wrong — it’s one of these things that people just don’t seem to know much about.”
Vicki Perez first noticed she was gaining weight back in October 2015 – and in less than 12 months she had ballooned from 9st 4lbs to 12st 4lbs.
Her face began to bloat and her feet swelled so large that she couldn’t even wear shoes.
The shocked mum-of-one learnt she had Cushing’s disease, which is caused by high cortisol levels.
But it wasn’t until last January that she found out it was due to a deadly tumour on her pituitary gland.
After two surgeries to have the tumour removed, Vicki has finally began to recover and is sharing her story to raise awareness.
Vicki, who is currently studying to become a dental hygienist in Florida, said: “The gym and fitness has always been my passion.
“I train every day. So I was shocked when I noticed my face was getting puffy and my hands and feet were swelling like water retention.
”They were so swollen I had to wear men’s shoes and my clothes didn’t fit.
“I felt bloated all the time and I didn’t want to leave the house.
“I continued working out at the gym not realising I was causing damage.”
In February 2016, she noticed strange rashes on her hands and body and was rushed to hospital in anaphylactic shock.
Vicki said: “When I saw the rashes I thought it was an allergy but the next day I work up and I couldn’t breathe.”
Despite numerous tests, medics continued to deny there was anything wrong.
The fed-up mum decided to see a Cushing Disease specialist at The University of Alabama.
She said: “I took my MRI and CT scan and they saw the tumour was in my brain.
“My hospital had completely mis-read it.”
After further tests, doctors were able to confirm it was a brain tumour.
She said: “I’m not sure how long I had the tumour. I thought I was going to die.”
After an initial surgery to remove the tumour on the left of her pituitary in June, and a second op to remove a second tumour in July, Vicki’s health began to improve.
She said: “Two days after the first surgery and my feet were normal.
“I was excited, I felt great, I felt amazing but a month later I was back in hospital for the second surgery.
“The recovery was hard, it hurt to move. I had to teach to walk again and how to run again.
“I was angry and I was crying all the time. It messes with your hormones and makes you think you are crazy.”
The road to recovery has been long and after eight months, Vicki still has a way to go.
But now her weight is down to 10st 10lbs and she is able to wear shoes and her normal clothes again.
She said: “It’s a slow process.
“I am not 100% back to normal and any emotional stress can be dangerous for me and cause me to go into shock.
“But I am starting to see improvements and I’m just focusing on my son and school.”
Vicki added: “My son really struggled with seeing me so sick but now I am able to spend time with him, he is so much better and not acting out at school.
“He’s the most important thing, I couldn’t have got through this without him.”
My name is Meriam San Antonio, 52 years old from Fairfield, California. I have been married for 19 years and have three teenage children. I was sick for almost 7 months ( starting March 2013) and the doctors couldn’t figure out what is wrong with me. My symptoms were being bloated, had edema on my feet and legs, swollen all over, had a “moon face”, bruising on my hands, myopathy/neuropathy, aching nerves, bloated stomach (as if I was pregnant), double vision, and lost my ability to walk.
I have been in and out of the ER due to having a congested heart failure, urinary tract infection, colonitis. I suffered from acute depression and tried killing myself. My blood pressure and blood sugar was soaring so high and uncontrolled.
After a series of tests, I was finally diagnosed of having Cushing’s syndrome. A surgery was done on August 2013 to removed my pituitary gland at the left side of my brain.. I had to take an early retirement from work and currently on Social Security Disability.
Two years had past and I have recovered. I lost weight, my blood sugar and blood pressure were now on the normal range. It seems after the surgery, everything was back to normal. I can now walk on my own ( without the help of a cane, walker and wheel chair) but had to undergo a knee replacement as I fell many times on my knees due to nerve weakness. I had a rough time and had gone through a lot.
I stopped taking my PTU medication as told by my doctor as I am already “Cushing’s free”.
But my endocrinologist just informed me that the result of my thyroid test was high. She ordered me to take a “nuclear iodine test” next week. I am so worried that my Cushing’s will come back. I do not want to undergo such experience as I was so traumatized by it.
Hi my story is so much like all the others that I have been reading on this site.
For the last several years I have been feeling bad, I am tired all the time. I have gained 50 pounds. I have always had a low body temperature and feel the cold more than most people;however in the last 3 years or so I can’t take extreme heat either. I am always either too hot or too cold. Sometimes I sleep for 12 hours and other times I do not sleep at all.
This year I have had people tell me that my personality has changed I am much more aggressive than before. I also look bloated around the face and belly. People keep asking me am I pregnant because my stomach is huge!
In the last 12 months my hair started to fall out. I got an peptic ulcer, been diagnosed with slow digestion, sleep apnea and arthritis of the spine. I used to be able to walk 4 miles in 40 minutes but now I can barely walk a mile. My short term memory is bad and getting worse all the time. I find it really hard to focus. I have had 2 upper respitory infections in the last 10 months which is unusal for me. Also I have dermatitis on my back which just started 4 years ago.
I thought maybe I had a thryoid issue so I went to my GP who sent me for bloodwork. She tested my TSH, T3, T4, ACTH and Cortisol. My TSH’s came back normal (2.7) but my ACTH and Cortisol is high. I don’t have diabetes or high blood pressure although my stress level is through the roof most of the time. Anyway my doctor thought that the ACTH and Cortisol was too high and she asked me if I was getting more headaches. I have always suffered from migraines but in the last couple of years the headaches have gotten worse. She thinks I may have Cushings disease.
My doctor was so concerned that she is sending me for an MRI and I got to a referall to an endo who I will see in two weeks. I will post an update as soon as I know something.
It started with severe skin acne on my back and arms. Then the bloating started. I went from one docter to the other. For months and months I was left undiagnosed. I gained so much weight, I went from a xs to a xl in a matter of 2 months.
My sugar levels was out of control and I could not concentrate on my studies. My hair started falling out and I got ugly stretch marks all over my hips and thighs.
I was finally diagnosed and had the tumar removed. Its a few weeks after surgery and I have started losing weight. I still feel ugly though, Im getting treated for low cortisol levels and I still have head aches.
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