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Amy (spunkybluecat), Pituitary Bio

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A Golden Oldie from July 11, 2011

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Hello, my name is Amy.

I was diagnosed with Cushing’s last November and had surgery to remove the pituitary adenoma in March.

It took me FOREVER (over 3 y) to get a diagnosis. None of my doctor’s would really listen. I was SO frustrated but kept on pushing because I KNEW something wasn’t right. Pre- surgery I had excess hair (facial+), weight gain (abdominal), stertch marks, fatigue, very irregular menstrual cycle…..Now that I’ve had the tumor removed I still have problems.

I’m hoping that some of you will help me to answer those questions/problems. My facial hair has slowed down, I’ve lost over 65 pounds in 3 months, I’m going through menpause now (I’m 36yo), my hair is starting to fall out, I have NO energy/fatigued all the time, some days I wake up OK and others I wake up vomiting or very unsteady like I’m going to pass out if I’m on my feet for too long. I am very depressed.

My life has fallen apart. My marriage is over, I have had to move in with my mother, I am unemployed, and I can’t do the fun things that I should be able to do with my 8yo daughter. I have no friends and my family is not supportive at all. They say I just need to get off my *ss. I’m tired of people blaming depression, laziness, etc. I want my life back.

I need help and don’t know where to turn. I hope that I can learn what I need to do solve these problems and meet some people who can send some sunshine my way.

Dee (Dee), Pituitary Bio

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My menstrual cycle ended when I was 38 years.  After a hormone panel, my doctor told me I was in menopause.

At this time, the whites of my eyes started hemorrhaging and my skin became paper thin, bleeding and bruising.  I was tested for Von Willebrands which came back negative.

A few years passed and my blood pressure sky rocketed, my hair started falling out, my teeth were breaking and I was gaining weight and unable to stop it.  I grew a heavy beard, black hairs on my arms and thighs.  My face became distored, my head was pushed towards my feet from a hump on my back.  I was losing the use of my legs, and unable to hold a pen or pencil.  I started to look 7 months pregnant with a larged mid-section.  I couldn’t retain simple instructions, and had to stop driving.

I saw numerous doctors, and each worked with the symptoms as the came, but no one put everything together.  My feet and fingers were numb, and I was losing the ability to think correctly.  I had severe depression and anger issues.

I saw an article in Reader’s Digest about a mysterious illness and took it to my current doctor.  She really didn’t think I had Cushing’s because it was so rare, but my 24 hour urine test came back postive.  Next I was sent for the MRI which showed the tumor on my pituitary.  I had surgery June 27,2007.

It took 18 grueling months to wean off the Prednisone.  I had chronic nausea and diahrrea during this time.  My Endocrinologist did not study up on Cushings and removed my Prednisone 1 week after my surgery.  I crashed and was taken to the ER in serious condtion.  He did it to me again a few weeks later, with the same results.  After the second time, he left my Prednisone alone for the next 18 months.

October 27, 2011 I had Paraespohcial surgery where my stomach had been pushed into my lungs.  It was a very diffcult surgery and recovery.  I am now batteling Celiac, which after reading up on Addisons, I am wondering if I have Addisons?  I had Addison’s crisis twice when my predisone was removed to quickly after my brain surgery.

Even though I am cured of Cushings, it seems the side effect continue to make their debutes.  I am grateful for where I am today, even though I don’t know what is around the corner.   I guess what’s around the corner will be dealt with when I get there, but for today, I am thankful.

Jennifer (Jennifer In Puget Sound), Undiagnosed Bio

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undiagnosed3I’m wondering about my situation. I haven’t been diagnosed with Cushing’s but I had my thyroid removed (Hashimoto’s with goiter, family history of thyroid cancer), concluded menopause, had two car accidents (rear-ended)…all in the space of a few years, around 2003-2006. Up until 2003 (the first car accident,) I was a very energetic, upbeat, even-tempered, fit, active, mother of two, and holder of three part-time jobs including teaching high school. I was 50.

Following the car accidents, I developed chronic disabling low back pain. Following the thyroidectomy I developed all kinds of symptoms involving almost all body systems. I’m now bedridden to housebound for great swaths of time. Up until now I’ve been haunting thyroid and adrenal boards, and plowing my way through endocrinologists, MDs and naturopaths looking for answers.

Starting in 2006, I began experiences episodes I call “tizzies” which have baffled all concerned. They last from 6-8 months, building up, reaching a peak, slowly subsiding. They are extremely debilitating and involve many, many symptoms mental and physical. After six or seven of these, I’m convinced they are episodes of extremely high cortisol and I do have some labs to support that, though they are from alternative type laboratories. The saliva ones take four samples spread throughout the day and the 24-hour urine ones are as they sound.

During a trough I have a saliva lab showing mostly low cortisol values. During a different trough I have 24-hour urine results from which the ND pronounced I had Addison’s-like adrenal function. During a recent peak I have both a saliva and 24-hour urine showing off-the-charts high levels of cortisol. Coming down from that peak, I have saliva results showing cortisol low in the morning moving up to extremely high at night.

 

What do you think?

Jennifer in Puget Sound

 

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rokchix86 (rokchix86), Undiagnosed Bio

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undiagnosed3

 

So, I’m in the process of being tested for Cushings. I have to have an MRI and CT scan pending bloodwork results for the contrast dye. My endocrinologist said I keep failing my cortisol tests. In other words something is always elevated.

For me my journey began a few years back when I was working out like crazy doing cross training and kickboxing 4 days a week and bike riding and taking long walks, I was also dieting. I kept gaining weight. I started needing maternity clothes. I had the hump already for a few years but was previously able to lose weight.

I assumed oin was menopause but nothing I did worked. The Drs did bloodwork which was all fine. I started having hot flashes do they put me on HRT which actually caused me to drop 5 lbs. Now I know something is off.

It took my BP shooting up suddenly along with my A1C reaching prediabetic range for the Drs to believe there really was something going on.

So here I am, I started my testing in June and now it’s Sept. Still no official diagnosis. I’m very tired and depressed. I don’t go out because I don’t want to see anyone. I can only wear stretchy pants and have a hard time finding long enough shirts.

I don’t recognize myself anymore. *sigh*

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