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Angie (Angie), Pituitary Bio

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My name is Angie.

I went to the Dr. in about Sept. of 2014 and was diagnosed with diabetes. I hadn’t seen my primary care Dr. in awhile due to her being out on pregnancy leave. She was there that day and she looked at me and told her nurse to set me up for labs to be tested for Cushings. She told me I had the look of a Cushing patient. I had gained about 50 lbs in about 6 months. I had the moon face and all the weight was in my stomach. My labs came back positive for Cushing. I was already seeing an Endo Dr. and she sent the labs to that Dr.

My Endo Dr did test on me and within 6 months they were positive I had Cushing. It showed I had a tumor on my pituitary gland. I surgery on my pituitary gland on April 11,2017. The endo dr at the hospital I had surgery at told me that the surgery was unsucessful I still had Cushing. They did a MRI in Oct. of 2017 and it showed I have 2 tumors on the gland now. I’m going for another MRI.

On May 7th to update so the surgeon will know if he’s going to take half of the gland or the whole gland. So that’s where I stand at the moment. I have diabetes, high blood pressure, high cholesterol,trouble with my bladder, kidney failure and my heart doesn’t relax its staying stiff all the time and causing me to have chest pains daily. I also have chronic migraines.

I joined a group on facebook when i found out i had it and read alot and asked alot of questions. People that don’t know anything about it needs to read up on it. I sent a link of the Cushing’s site to everyone in my family to read up on it. Some have and some haven’t.

Theres still alot I don’t know and I think it great that the ones that does have it and know alot more than some of us is a blessing.

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Woman with hump on her neck diagnosed herself with Cushing’s disease

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Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012

A woman who lived with unexplained weight gain and debilitating symptoms is finally getting her life back after diagnosing herself with a rare hormonal condition.

Jennifer Trujillo, 33, noticed she was mysteriously gaining weight and losing muscle despite training for an athletic event in 2012. She consulted doctors, but they were unable to identify the cause.

As time went on, the music consultant and video director,from Santa Fe, New Mexico, noticed that her hair was falling out, her skin bruised to the touch, her face was increasingly round, and her bones were becoming more fragile, with her foot breaking unexpectedly.

Her anxiety increased, and Jennifer, who also suffered from debilitating migraines, consulted her doctors again. Experts told her she might have a thyroid problem, bad genes or the start of osteoporosis.

‘I was training for an athletic event and started noticing that I was gaining weight, not losing it. I was losing muscle, not gaining it,’ Jennifer said, recounting her symptoms. ‘Shortly after that my blood pressure shot up through the roof.

‘My face was taking on a moon shape, very round and chubby. My anxiety was so high. Unbelievable migraines. I’d explain all these things to doctors for years and nobody would listen to me.

‘They said I may have a thyroid problem, or I may be getting osteoporosis, or I just had bad family genes and I would have to struggle to stay a good weight. But none of it made sense. I was even referred to a therapist because they said I was making up too many symptoms to make sense.’

To Jennifer, none of these explanations seemed plausible because she was working out twice a day and eating a vegan diet.

It wasn’t until she noticed a hump growing on the back of her neck, known as buffalo neck, that she googled her symptoms and found they matched those of Cushing’s disease.

Jennifer had always thought the bump was due to her ‘terrible posture’, but she discovered the hump was in fact a symptom of the condition.

‘One night I was looking at it and I was so disgusted so I googled the words “fat on back of neck”, and this thing called buffalo neck came up,’ she said. ‘From there, everything unfolded. I found Cushing’s disease and it was every symptom I had to a T, everything down to my foot breaking out of nowhere.

‘I took this information to my doctor and he was the only one who listened to me. He helped me and the rest is history. He himself was amazed I diagnosed myself with such a rare disease.

‘In my best description I would say Cushing’s slowly attacks different areas of your body. You literally experience pain and symptoms from head to toe, and it felt like each week I was waking up to something new.

‘I was able to maintain a somewhat tolerable weight before this because I became obsessed with working out and eating healthy because all this time I just thought I couldn’t lose weight. My doctors mentioned that if I hadn’t done all of this activity then I would have been in much worse shape. I’d easily be over 200 pounds, may have diabetes, osteoporosis, the list goes on.’

Cushing’s disease develops when the body makes too much cortisol. The condition often develops as a side effect of treatments for inflammation and autoimmune conditions, but can also develop as a result of a tumor inside one of the body’s glands.

The main treatment is to stop taking the medication causing it or to remove the tumor. If left untreated, the condition can cause high blood pressure, which can lead to heart attacks and strokes. It affects about one in 50,000 people.

Jennifer found out she had a tumor on her pituitary gland that caused the body to overproduce cortisol.

Thanks to her active lifestyle, Jennifer’s weight gain, which saw her going from 105 pounds to 145 pounds was not as significant as it could have been.

Jennifer had surgery in August last year to remove the tumor on her pituitary gland and has been rebuilding her life ever since.

For Jennifer, recovery has been more difficult than living with the condition itself. She sometimes struggles to get out of bed as her body adjusts to producing less cortisol, meaning she feels less energetic.

However, her symptoms started to disappear almost instantly after the operation.

‘After surgery my symptoms quickly started to disappear like rapid fire. It was crazy,’ she said. ‘My weight dropped. I stopped bruising. The hump on my neck went down. My bones healed. My hair grew back. My face returned to its normal shape, and the best part, my blood pressure returned to normal.

‘My friends and family are amazed. Every time I see someone new they say I look like a completely different person.

‘Recovery is hard. I’m still going through it. Believe it or not it’s been harder than the actual disease. When your body is used to producing so much cortisol to all the sudden be producing nothing, your body crashes.

‘Some days it’s hard for me to get out of bed and move, I’m tired all the time and have zero energy. I’m only able to walk at the gym maybe two days a week. I’m currently on cortisol replacements so that my body levels out. Every two weeks I reduce my medication because the goal is to be completely off it and have a normal functioning pituitary gland.

‘However, every time I reduce my body crashes all over again, so it’s like a never-ending cycle. But I know that someday it will get better so I’m getting through it.’

Jennifer, who has been charting her progress on Instagram, shared her advice to others who might be suffering from similar conditions.

‘Never give up trying to find an answer and push your doctors to listen to you,’ she said.

‘If I hadn’t discovered this on my own I’d probably still be suffering.’

Read more:http://www.dailymail.co.uk/femail/article-5450135/Woman-diagnoses-rare-hormonal-condition.html

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Zoe, Pituitary Video

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Zoe shares her experience of living with Cushing’s disease, a rare condition that develops when your body produces too much of the hormone cortisol.

The commonest cause of spontaneous Cushing’s disease is a small benign tumour in the pituitary gland. Symptoms usually develop gradually and so the diagnosis may not be clear for some time.

Watch and share Zoe’s story to raise awareness of this rare condition.

 

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Stacy B, Pituitary/Adrenal Bio

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Hi my name is Stacy Boswell. I am 42 years old and from Indiana.

I have tumors on both adrenals and one on my pituitary. I have had 2 saliva highs and 4 dex tests where I did not suppress, with low to normal ACTH and high cortisol.

I am meeting with a 3rd endocrinologist in February due to my my last endo dismissed me stating I was a complicated case. She refused to do an IPSS stating that there isn’t enough clinical proof but offered to put me on a new trial drug in which I declined.

I am unable to work and trying to get long term disability through my job I did have prior to all of this. I also have hashimoto and had a total thyroidectomy this past July. I as well have had a complete hysterectomy back in 2002 due to pcos, endometriosis and cervical cancer cells. I have had genetic testing done for MENS 1 and AIP I am awaiting those results as well as waiting the results for Sjogren’s syndrome test. I as well just been recently diagnosed with occipital neuralgia.

All the specialists that I have seen all state these things would more than likely subside if the Cushings was treated. I feel at a loss and hopeless. Indiana is a dry state for cushings specialist and I do not have the means to travel so I’m just stuck.

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Irene, Pituitary Bio

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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.”

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Paul M (Paul), Pituitary Bio

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Hi All,
I was diagnosed 4 years ago. I had extreme weight gain despite a very physically active life style. I would require less than 2 hours a night of sleep. Eat less than 1,000 calories per day and exercise 3-5 hours a day. I had the emotional swings as well. I would bruise or cut very easily. Doctor suspected Cushings after I displaced my knee cap for the second time due to Patella Tendonitis.

Months of testing resulted in what the doctors considered a low likelihood for positive outcome, the surgeon (supposed to be one of the best) agreed to remove the tumor either way. It was filling the Sella to the point it was pushing on my pituitary. It was wrapped around my optical nerve and would probably cause problems with my eyesight.

I was told that I would be back to work in 3 weeks.

Post Surgery my Cortisol levels never rebounded. The doc gave me 10mg of cortisol with no affect. Then they gave me 40mg and I could get up to go to the bathroom. Within an hour levels were back down to 3 (whatever).

They put me on 80/40mg of Cortisol for morning and noon each day. I still was basically unable to move. After 1 year. I was off cortisol and passed the suppression test. And still wasn’t losing weight, felt sick all the time.

It appears my anterior pituitary gland has not recovered. I don’t make enough TSH or the hormone to induce Testosterone. I took the Gel for testosterone with poor results. My thyroid tests are considered inconclusive. I try to feel out my thyroid dosage. Now I get testosterone implants. They seem better.

Basically put, four years later I feel almost as bad most days as before the surgery. Weight gain is still an issue. The major differences are, I sleep really well. I don’t bleed at the touch. My feet are very week, I could sleep 15 hours a day.

 

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Maria, Pituitary Bio

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Originally from December 29, 2007

 

Hi there, I am 26 but I was diagnosed at the age of 16 with a pituitary tumor, 17 when I had removed the first time and 19 the seconded time.

Here is the story. I was pregnant at 15 and gave birth at 16. My son was born in June (I was 135 lbs) by December I was 240lbs. I had all the classis symptoms. Weight gain, thin skin, upper back hump, moon face, lack of a menstrual cycle, high cholesterol and the strata (all over stretch marks).

I was diagnosed in March in July (1999) since I live near Pittsburgh I had surgery with one of the doctors who developed the use of the Endoscope for removal of pituitary tumors. I had been told that the tumor would not come back. It was fine to have more kids. There was one in a billion chance that it would be a tumor that grows like cancer, and then there was a one in a million chance that there would be any of the tumor left behind that could grow back. A

fter words I lost most of the weight and the moon face. I had no need for hormones, because they only remove part of my pituitary, I also graduated high school and was married.

I felt very good when I gave birth to my 2nd son 22 months later (April 01). I was 160lbs. Well, I tried to ignore the weight gain, the lack of menstrual cycle, but when my hump started to come back and when in infant’s finger nail scratched me and I bleed, I self diagnosed this time and went to the doctor for confirmation.

I was 280lbs when I went in for the second time in November (2001). Now I am 90% sure there is a tumor up there I do not know I do not want to have a M I R to see. My husband and I will not have any more kids.

I still have a fear that it will come back on its on or if I suffer a body troma that causes the pituitary to enlarge that it will cause the tumor to grow and I will have to go through this again. I am still struggling to lose this weight. I am now 230

 

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