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Summer J (Summer84), Pituitary Bio

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Hello my name is summer

When I turn 30 I started having a lot of health problems by my 31st birthday I had a kidney stone that was the size of a cherry pit. After having multiple lipotripsy used to have that kidney stone removed the doctor insisted that I go and see a primary physician, by that time I haven’t seen a doctor in quite some time I have been treated for severe pain and all they would tell me they could make me comfortable but that they could not do anything for me so I stopped going.

My first doctor’s appointment with my new primary physician she asked me why it had been so long since I’ve seen a doctor and I told her that I was scared she told me that there was nothing to be scared about within three months of my first appointment she told me that she thought I had Cushing’s and that we needed to figure out if it was syndrome or disease.

She sent me to a endocrinologist and the first thing he told me was nobody has Cushing’s don’t worry about it the in endocrionologist apologized one month later and referred me to University of California San Francisco. The endocrinologist department at the University was able to discover that it was Cushing’s Disease after taking blood from my pituitary gland , I was introduced to the neurosurgery department and we scheduled my surgery my tumor was removed 1-24-17 . I was giving steroids and an appointment the following month as I reduced my steroid use I got sicker and sicker and ended up in the hospital unable to make it to my doctor’s appointment.

Unfortunately I was not prescribed anymore steroids. When I was finally well enough to make the journey to my doctors they realize their mistake apologized and changed their policies unfortunately during that year I was very sick in and out of the ICU. Neurosurgeon and my new endocrinologist were very surprised that I was able to survive not having any support. They had mentioned that they believe I had a very high long term exposure and that I had gone into shock multiple times. Its now been a year in a couple months and I’m feeling better , Im still having incredibly fatigued and have horrible insomnia but things are looking up.

PS .if this doesn’t make sense I have a little brain fog sorry…

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Patty, Pituitary Bio

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April is Cushing’s Disease Awareness Month. I would like to help raise public awareness about this debilitating illness. It is so misunderstood by most medical professionals that their patients often suffer for many years without a correct diagnosis and, in far too many cases, never get a diagnosis at all.

I personally suffered from a common list of Cushing’s symptoms for years. I sought help from medical professionals and was told nothing medically was wrong with me other than I was menopausal and needed to lose weight.

I gained 70 pounds in a short amount of time due to a tiny tumor in my pituitary gland which was overproducing the hormone ACTH, causing Cushing’s.

Besides rapid weight gain, my forearms bruised. I had a red face and neck, grew a hump on the back of my neck. My belly swelled to pregnancy size. I had high blood pressure.

No matter what I ate, how much I worked out, or how much I explained to everyone around me that I was not doing this to myself, no one believed me. I went about five years not sure what I would do because my body was slowly breaking down and was in really bad health.

In 2016 my back went out and I needed surgery. I was at a followup visit with a PA when he asked if I knew why I blew my back out.

Desperate, I got emotional and told him my story. I told him I thought I had Cushing’s disease based on my own internet research. He was the first person to listen to me and gave me a referral to see an endocrinologist. The endocrinologist took one look at me and knew without testing, although we did test and it was confirmed.

I met with my neurosurgeon and ENT and had surgery June 2017 to remove a 1 centimeter pituitary tumor, which lies at the base of your brain. I will forever be grateful to the team of doctors who saved my life and also to the PA who listened to me.

Life is slowly getting back to normal (or my new normal, I should say.)

Shared from https://www.thecamarilloacorn.com/articles/disease-may-be-hard-to-diagnose/

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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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Annie, Child With Pituitary Cushing’s

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We’re sharing the story of Annie, who was treated at Eunice Kennedy Shriver National Institute of Child Health and Human Development for Cushing Syndrome.

Thanks to the incredible doctors at NICHD & The NIH Clinical Center, she underwent an extremely successful clinical trial and surgery and is now thriving like a child should.

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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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J Stone (J Stone), Pituitary Bio

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Hi. I’ve been diagnosed with Cushings Disease since 2010.

My journey started in 2009: weight gain, headaches,high blood pressure, mood changes, insomnia every symptom except stretch marks.

I was in nursing school at the time, worked full time as well. I just started to feel “not right” I knew something was wrong, even mentioned all my symptoms to my nursing instructor and she said “ do you have Cushings?” Those words changed my life.

I started researching Everthing! I became obsessed. I started to visit my GP. The answer “you’re old and fat and need to diet” I was 42. Then it became “you’re premenopausal and fat” eat less, exercise more. I had been eating very well and was as active as I could be. He kept telling me the same thing for the 6months I kept going back to the MD office.

After all my research and reading I became convinced Cushings is what I possibly could have. I went to his office, sat down and told him I wasn’t leaving until I had an order for a 24 hr urine and serum cortisol. He laughed but gave me an order. Took the tests and what do you know,high levels. He promptly referred me to an Endo.

I will never forget the words she said to me on my first visit “ I’m very afraid for you” as all my tests were very high. She referred me to a specialist in Cushings which is in an other state. I traveled to see her and she confirmed and diagnosed me with Cushings disease. And then it became a whirlwind of tests and surgery. She told me I had a very advanced case and probably had Cushings for at least 5 years before seeing her.

It is now 2010, a year after I had first started to see my GP. I had my first Pituitary surgery in Nov. 2010. They removed the tumor and a bit of my pituitary. I recovered 2011. It took a very long time for my adrenal glands to wake up. I was on hydrocortisone for over a year before I @could taper off completely. I was back at work, loosing weight, getting my strength back and feeling hopeful this was the end.

Not so lucky. I had about 2 years of doing pretty good, but in 2014 I started to have all the signs again. Weight gain, pain, insomnia. My lab work had started to show all the Cushings signs again. MRI’s showed tumors, more of them are back. I tried the drugs available, all of them, none worked.

I had my second surgery June 2015. After surgery I was told it was unsuccessful plus I had even more tumors. One which is on my carotid artery. So I continued on trying the meds available, still no improvement. 2017: my symptoms getting worse, feeling terrible. Gaining weight. My tolerance to activity has greatly decreased and the headaches are constant. All the symptoms are back. I have been told I can not have any more pituitary surgeries because the tumor is on the carotid. I have altered my work, I now can only do a desk job and not work on the floor taking care of patients as it is too difficult for me.

I now have terrible high blood pressure, increased diabetes, osteoporosis with significant bone loss, weight gain, headaches constantly, insomnia etc. so the next step, I am seeing my provider who I have to travel across state lines to see and plan on discussing a BLA as I feel this is my last option to provide me relief and move on with life.

I will have to see what happens.

Cheers and thanks for reading.

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Moxie G, MoxieGarrett, Pituitary Bio

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August 1, 2017:

It’s been 3 months since my surgery. I’m still trying to piece my story together.

I think it begins with the pregnancy and birth of my last child in 2012. After 3 exemplary pregnancies and home births, I never expected the cholestasis, a 36-week breech & manual turn, or a retained placenta and near fatal delivery. After successfully nursing 3 children, I struggled to produce enough milk and gave up after 3 months. I was ashamed of my inability to have a healthy pregnancy and nurse my baby. I tucked it away.

Normally a very thin and “bounce back” kinda person (5″8/130lbs), I was unable to entirely lose my baby weight and then noticed a gradual weight gain. My wedding rings no longer fit and when I went to get them resized, I was told my finger had changed by 2.5 sizes. I was embarrassed. I took them off.

My once angular face became puffy & round. I developed acne on my back and arms. Nothing healed. I started noticing dark facial and body hair on my blonde body. Normally a pink person, I didn’t really notice when my skin turned red. Normally easy to bruise, my new ones didn’t alarm me. Having not escaped my pregnancies without some stretch marks, I didn’t think much about the excess ones I was sporting. Always complaining of feeling cold, I now felt like I was overheating and wanted to rip my clothes off. My cuticles cracked and bled and I chalked it up to winters in Canada. Two of my teeth broke and I figured they were just weak… it runs in the family. My newly prescribed glasses made everything look fuzzier… oh well, I’ve always had poor vision. I attributed my alarming hair loss to post-pregnancy normalcy. I figured the continuing lactation was just a left-over indignity. Pretty sexy stuff.

People asked me on a regular basis when I was due. My abdomen was completely rounded, my breasts were huge, but I still had comically thin limbs. It felt like my body was open to judgement and commentary. I was ashamed of my new appearance. I made light of it.

I stopped attending social functions because I hated the way I looked. I couldn’t bear going through the process of trying to find something flattering to wear and then having to field questions about my uncharacteristic weight gain. I felt like I always had to explain myself. It was humiliating. I withdrew.

I had a pathological, insatiable thirst. Normally not a large beverage consumer, I was pounding can after can of whatever I could get my hands on. I planned every excursion around knowing where there were restrooms and where I could buy my next beverage. My sleep was interrupted hourly. It became a joke among my family & friends. I limited where I would go and who I would be around.

I oscillated between having super-human energy (16-18 hour self-imposed workdays) to being so bone-weary that I would fall asleep sitting up at my computer, mouse still in hand. When my symptoms began, I was working in senior positions in advertising agencies. It was a demanding & high-paced lifestyle. Also during this time, I left my career to open my own business. In the 5 years I was sick, I launched a successful childrens’ retail store. I assumed my exhaustion was a natural by-product of my workaholism. All working moms are this tired, right?

I couldn’t understand… I was functioning at a high level… 4 happy kids, a great marriage, a clean house, a successful business, I was even freelancing as a strategist on the side. Why didn’t I feel like myself? What was going on with my body? I surely couldn’t be ill. I was doing just fine. Look. See? I should just try harder.

I often said to my GP that I thought my hormones were outta whack. Nothing was severe enough to warrant a doctor’s visit or alarm. Everything was manageable but there were so many small, strange things happening that I was sure something was off. Eventually, she ordered blood tests. I carried the requisition around for almost a year. I thought I was overacting and wasting people’s time. In June 2016, I had a severe sinus infection and went to my doctor. Sheepishly, I promised to attend to the blood work I had been avoiding.

A week later, my doctor’s office called and told me to walk myself to the hospital emergency room. My sugars were 34 (Normal is 4-6, Coma is 16+). I didn’t know what this meant but was assured it was severe. I called my husband and we went out for dinner. I sent him and my daughter home and walked to the hospital.

I started to get an idea of how serious it was when the hospital staff rushed me in and started giving me insulin shots. No-one could understand why my sugars were so high and how my body was tolerating it without shutting down into a coma. They tried unsuccessfully for 24 hours to bring my sugars down to acceptable levels. With no history of family or gestational Diabetes, I was diagnosed with Type 2.

Dealing with this diagnosis was hard. It was my belief that only fat, lazy people with horrible lifestyles developed this disease. I went home and had to learn how to live like a Diabetic. I cut sugar completely out of my diet. We had to relearn how to grocery shop and cook. I had to start reading and understanding food labels. My husband made me disgusting quinoa muffins. Being a Diabetic became a full-time hobby. And the medications wreaked havoc on my digestive system.

The road to finding out what was causing the resistant Diabetes was in full throttle. I met dozens of doctors, nurses, technicians, and specialists. I had CTs, MRIs, X-rays, diabetes management & dietician appointments, urine tests, blood tests, hormone tests, pre-op & pre-admitting appointments, visual tests, Neuro-opthamology appointments, ENT consults, Endrocrinology reviews… It was constant and exhausting. I developed a deep hatred for medical tape.
So, Diabetes symptoms led to a Cushings Disease diagnosis, which eventually led to a pituitary tumour diagnosis. I had a 9mm Adrenocorticotropic hormone (ACTH)-producing tumour. Surgery was booked. Jokes were made. All of a sudden, I needed everything about as much as I needed a hole in the head (They really did drill a hole in my skull. It’s held back together with glue!). But being diagnosed with a brain tumour was a relief. Something beyond my control was responsible for my current condition. I didn’t do this to myself because I was incompetent, lazy, or deserving. This was done to me and now we could try to fix it.

My surgery was booked at St. Michael’s Hospital with Dr. Cusimano here in Toronto for April 21. Due to a hospital error, my surgery was cancelled at the last minute and re-booked for May 1. After my family travelling here to be with me, getting my house in order, making arrangements for my store, childcare, packing my bags, saying cryptic goodbyes to my loved ones just in case, and even shaving my legs, I was crushed. I had mentally prepared and now I had to wait another 9 days and do it all over again.

Getting prepped for surgery was terrifying. I was in surgery for just over 3 hours and in intensive care for 3 days. I slept a lot during my immediate recovery. I had a bout of Diabetes Insipidus. But the good news? My cortisol crashed immediately. This assured everyone that the tumour was gone. The bad news? I felt like absolute garbage. My mom, my husband, my brother, and my best friend were there with me. I let them take care of me. I let them take care of everything.
Surgical recovery is manageable. Getting the stitches & stints removed from my nose was absolutely horrible and I had what I thought was a panic attack directly after the procedure. It really scared me (I now know it was my adrenalin crashing. My surgery has left me with an adrenal insufficiency which means my body cannot handle any stress, illness or injury.). Scar tissue has formed around one of my nostrils. It is affectionately known as “Mini Nostril”. And I can tell you that not blowing your nose for 3 months is one of the most annoying things in the universe. I went back to work 8 days after surgery. I shouldn’t have, but I’m a show-off. Everybody that sees me is stunned at the transformation thus far. My skin is a normal colour and I have lost nearly 30 lbs. People that knew me before I got sick say, “Welcome Back”. People that didn’t know me previously ask me if I am ok or don’t even recognize me.

Chemical recovery is terrible. My sugars are behaving more normally and I’ve been able to discontinue one of my three medications. I started my hormone weaning a few weeks ago and it is so hard. My latest blood tests show that my body is still not producing it. Every muscle and joint aches. I barely eat anything. I have headaches. It takes me hours to fall asleep. I’m dizzy. I’m weak. I’m exhausted. I’m not sure my digestive system will ever be right. I’m so tired of complaining. This will be my reality for at least a year.

But, I am hopeful. I know that I will heal. And most of all, I am grateful… for the love of my friends & family, the health of my children, the healthcare system of my country, and the chance to reset my life. I put my wedding rings back on yesterday. They fit.

(And what of that fucking tumour? The hospital adopted him. I had to sign papers and everything. You’re welcome, science.)

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