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Steve, Ectopic Bio

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I am recovering Ectopic Cushing survivor, I am 52 years old, I originally got sick when I was 22 it was 1987, I went un diagnosed for 12 years. I had every symptom there is with Cushings from the crazy weight gain to blood pressure being at stroke levels for the 12 years and terrible vision issue that I still struggle with today.

I had 2 surgeries, first I had the Pituitary surgery which left me on deaths door, miss diagnosis of Pituitary when it actually was ectopic with a nickle size tumor in my right lung between my upper and middle lobes. they removed all but a potion of my upper lobe.

I have struggled with vision issues ever since as well as depression, terrible fatigue and all of the other issues that come with having Cushings!

 

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Sharon M (Sharon), Ectopic Cushing’s

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lungs

 

I was diagnosed with Cushings in 2005. I had surgery in 2006 which required my lower right lung to be removed. Mine was rare because my symptoms cycled.

After having surgery in April of 2006, I was doing very good. All my symptoms went away, I lost weight, worked out and had few bad days. However, 3 years ago, I started feeling fatiqued and sick a lot. Now, about 6 months ago, almost all my endocrine problems are back. I’m not showing any outward signs though..

I’m seeing my Endocrinologist again and being retested because now I am not doing good at all.

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LisaG, Ectopic Cushing’s (Golden Oldie)

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golden-oldie

 

Diagnosed April 1997 with Cushings. They figured it was about 9 years in coming to a head. Started with the weight gain then disc problems (surgery), problems with my teeth breaking, acne, facial hair all the good stuff. Kept changing my hair color as something just wasn’t right but eventually realized it was my skin color darkening.

Took a trip to NYC in Feb of 1987 and swelled up and turned yellow during the trip. Went to the Dr when I got back and they tested me for Hepititas (sp?) and AIDS. Dr asked me if I had been using steroids. Changed Dr’s due to a change in my health insurance.

I talked to her for about 10 minutes about all my symptoms and she said “You have Cushings”. She sent me to an endo at Portland Diabetes Clinic. He got me in to see Dr Cook up at OHSU (Oregon Health Science Univ) and he scheduled the Petrus Sinus Sampling. From that they determined it was an Eptopic tumor.

They started doing Catscans and MRI’s until they found a small lung tumor. I finally had surgery in Sept 1987. The months leading up to that surgery were pretty scary. I ended up being pretty heavily medicated by the psychiatrist I started seeing. I think for me the mental and emotional symptoms were as bad or worse then the physical symptoms.

I’d like to say that’s where this ended but…alas. I started experiencing the same symptoms again and went to the Dr again in April of 2005 and was again diagnosed with Cushings. I am back with Dr Cook and am awaiting the results of the second Petrus Sinus Sampling.

Update October 26, 2006

2nd Sinus Sampling again was negative so again have an Eptopic tumor. After about 4 months gave up looking and decided on a BLA. Since my surgery in Sept 2005 until today Oct 2006 I have lost 60 pounds and my Cushing look is starting to fade. I take my medication without fail and have stayed with my new healthy lifestyle. Still looking for my eptopic tumor, it hasn’t decided to be found yet.

To all those not yet diagnosed or “cured”, Hang in there. If you aren’t happy with your doctor, find a different one. Also, don’t wait for someone else to tell you about your disease. Research!! Hope my next update will be for my tumor removal.

 

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Surviving Cushing’s: Area woman hit by rare disease

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Gina Gregoire Helton is certain if she had a dollar for every time she has heard the word “rare,” she’d be a rich woman.

She has a lot to be thankful for. She’s been married to Sean, the love of her life, since 2011. She has a warm, gregarious family consisting of eight sisters, three brothers, over 30 nieces and nephews and two loving parents, Charles and Denise Gregoire of DeWitt.

But in April 2012, Helton started to experience disturbing symptoms. She had sudden-onset hip pain. A few months later, she had unexplained hair loss and breakage. Deep, red and purple stretch marks, also known as striae, started appearing on her skin.

They were painful and she credits them for essentially saving her life.

“They were the ‘red flag’ that something was definitely not right,” Helton says.

She went to see her doctor, Dr. Jennifer Bell at Genesis Health Group in DeWitt, who admitted she was stumped. Yet, based on the presence of the striae, Bell wanted to test one more thing – Helton’s cortisol levels.

Cortisol is a life-sustaining adrenal hormone that influences, regulates or modulates many of the changes that occur in the body in response to stress. Those changes include blood sugar (glucose) levels, fat, protein and carbohydrate metabolism to maintain blood glucose; immune responses; and anti-inflammatory actions.

As it turned out, her levels were abnormally high. Bell referred her to a specialist in the endocrinology department at University of Iowa Hospitals and Clinics (UIHC) in Iowa City. Cortisol levels fluctuate throughout the day, but further testing showed Helton’s levels consistently remained extremely elevated.

That was the first time she had ever heard of Cushing’s disease.

Helton had nearly every single symptom of the disease that affects less than 200,000 people in the United States.

In addition to hip and back pain, hair breakage and stretch marks, she suffered from moon face, frequent bruising, depression and anxiety, weight gain, frequent urination, high blood pressure and muscle atrophy.

“I was extremely relieved to have a diagnosis,” Helton says. “At the same time, I was scared as I started to learn more about Cushing’s disease and what it can do to your body. There are people dying from this because of improper diagnosis. I was blessed my doctor at UIHC was educated on the disease.”

Most individuals diagnosed with Cushing’s have a tumor on their pituitary or adrenal glands.

Helton’s tumor, however, was located on her lung. Fortunately, her doctor decided to scan that area of her body and discovered the tumor.

In November, Helton underwent surgery to remove the tumor in her chest. However, during the procedure, some microscopic-sized tissue was left behind. So, in January, she found herself in the operating room once again. However, in order to get rid of the remaining tissue, the surgeons’ only option was to remove Helton’s entire left lung.

The situation went from bad to worse when it was discovered the tumor was malignant. It was a very rare tumor called a carcinoid tumor. These tumors are slow-growing cancers that typically start in the lining of the digestive tract or lungs.

After they took her lung, doctors noticed the cancer had spread to her lymph nodes. Members of the oncology department recommended chemotherapy and radiation as treatment.

Because her particular condition is so rare, doctors cannot say definitively what Helton’s prognosis is. Living with only one lung, her physical activity is restricted. Yet, Helton is partaking in water exercise to help ease the pain in her hips and keep her muscles strong. While climbing the stairs is a major obstacle, she intends to participate in the next Fight for Air Climb in Des Moines sponsored by the American Lung Association.

It may take her longer to reach the top than most, but she has made it her goal to finish.

Helton also plans to become an advocate for the Cushing’s disease community. She has yet to meet anyone else in person who suffers from the condition, but has connected with hundreds of them through social media.

In particular, Helton has made contact with Dr. Karen Thames from Chicago. She has been diagnosed with Cushing’s and is working on a documentary called “The War to Survive Cushing’s Disease.”

Helton says the experience has dramatically changed her attitude and outlook on life. She no longer “sweats the small stuff” and her relationships with her loved ones have become stronger.

As for people who are experiencing any of the symptoms associated with Cushing’s, Helton encourages them to seek help.

Even if there are no immediate answers, don’t give up.

“If you are experiencing something with your body that doesn’t seem right, keep seeking help. There is a doctor out there somewhere that will help you. We all know our bodies and when something is wrong.

“My faith and relationship with God has grown tremendously. I count my blessings daily. That is the silver lining. My favorite quote is, ‘Everyone you meet may be fighting a battle you know nothing about. Be kind. Always.'”

via Surviving Cushing’s: Area woman hit by rare disease.

Did She Have Cushing’s?

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By the time A.A. arrived in my office, she had spent almost a year looking for answers.

In November 2012, she was 45 and struggling to lose weight and keep her blood pressure down. What sounds like a common scenario, however, was anything but.

A.A. was experiencing fatigue and malaise, and the area around her eyes bruised easily. Another puzzling symptom: She said she was acutely aware of her neck. It wasn’t pain, but awareness. She was losing more hair than usual in her brush and had stopped menstruating, and her skin broke open easily. Her primary-care physician thought it was early menopause.

She asked family and friends, but no one had such symptoms at menopause. She was increasingly self-conscious as she gained weight. Her primary-care provider referred her to an OB/GYN, and a variety of tests came back normal, including a pap, thyroid, female hormones, and a transvaginal ultrasound.

Worst of all, A.A. struggled emotionally. She felt as though she were in a constant state of agitation, with depression and anxiety. A.A.’s symptoms slowly took over her life. She was becoming a person she hardly recognized.

In July, she ran into a friend who was a nurse. Noticing the puffiness of her face, the nurse asked A.A. whether she was on prednisone. Learning she wasn’t, the nurse suggested A.A. might have Cushing’s syndrome, which results from too much cortisol in the body for long periods. It can be caused by taking a corticosteroid, like prednisone, or by something inside the body signaling the adrenal glands to produce too much of the hormone.

A visit to an endocrinologist confirmed the diagnosis after a 24-hour urine-cortisol test, and an MRI appeared to reveal a small adenoma on the pituitary gland. The endocrinologist referred her to Jefferson to see a surgeon.

Although she was not looking forward to brain surgery, A.A. was relieved to have an answer.

But neurosurgeon James Evans, Jefferson’s director of pituitary surgery, did not think the Cushing’s was caused by the pituitary adenoma. He ordered an additional MRI and blood work, which confirmed his hunch, and he referred her to Jefferson Endocrinology for further detective work.


Solution

When A.A. walked into my office, she was extremely stressed and exhausted. I ordered a chest CT, which revealed a nodule. But it did not fluoresce during a nuclear medicine test, as it likely would have had it been causing the Cushing’s. Next up was a series of scans, but all came back clear.

I still felt the tumor should come out and referred her to cardiothoracic surgeon Scott Cowan.

Three days after surgery to remove one lobe of her lung and the tumor, A.A.’s face already was noticeably slimmer.

Her Cushing’s was caused by a carcinoid tumor the size of a pencil eraser in her lung. The tumor – although not large enough to fluoresce during testing – had been signaling her adrenal glands, which produced enough cortisol, the fight-or-flight hormone, for 24 people.

Cushing’s accounted for all her physical and emotional symptoms. The syndrome can be missed because it mimics obesity in many ways.

With the tumor out, her adrenal glands would effectively go to sleep. She’d need prednisone, which would slowly be tapered over the next year. Fortunately, A.A.’s lymph nodes were clear, and she did not need radiation or chemotherapy.

Over the next year, A.A. got her life and her body back. By January, A.A. was completely off prednisone, feeling and looking like herself.
Read more at http://www.philly.com/philly/health/20150412_Could_brain_surgery_solve_her_baffling_symptoms_.html#xPCBW4wRoFxTCWDh.99

Lor, Pituitary Bio

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golden-oldie

From Tuesday, June 9, 2009

9-07

COLON SURGERY: 1’ colon removed (pre-cancerous pulup/tumor removed.)
10-07

HEAD/NECK/SHOULDER/THROAT PAINS: hundreds of daily: “pops” in neck, terrible stabbing pains in base of skull, throat, shoulder, with hundreds of random screams of “ouchhh” daily for months. Tests or Treatments tried: chiropractors, ibuprofen, hot packs, x-ray on neck normal, physical therapy, MRI on neck normal
1-08

BODY JOLTS & INVOLUNTARY MOVEMENTS START: electric jolt sensations and myoclonic type jerks and involuntary movements – mostly when relaxed. Movements will stop if I get up and move around. These come with or without loud screams, gasps or other vocal noises. Tests or Treatments tried: EMG normal, MRI of head and normal, pain meds no help, oral steroid by Physiatrist no help,
1-08

SLEEPING PROBLEMS: wake up every night and sometimes stay awake for many hours – happened entire 2008, but 2009 was better.
2-08

MOUTH/JAW/TONGUE START: randomly the tongue tingles or twtiches, the jaw & cheek have pain (like someone is pulling off my face), the mouth/throat/tongue/and/or gums get ice cold, the mouth waters for hours. Tests or Treatments tried: more blood work normal, except a 7x higher than normal inflammation which neuros said had to be a lab error. Got steroid shot in head where the stabbing pain is. EEG recommended due to small seizure like movement when injecting the steroid.
4-08

MUSCLE TWITCHES START: randomly, different muscles twitch, hundreds of times daily (it is like body is making popcorn). Tests or Treatments tried: took a coupld stress free vacations. (I now its not stress related anyway but since the doctors cannot diagnois me, they don’t know what else to think. No help – same symptoms. Seen Neurologists with no answers. Got another steroid shot in head.
8-08

KNEE POPPING STARTS: just like neck from 10-07, one day it started to “pop” with pain hundreds of times daily. This made it hard to walk for months. Tests or Treatments tried: knee x-ray-normal and a special Lymes Blot test in California = negative.
11-08

Another Neurologist: Repeated inflammation test=normal.
12-08

Rheumatologist ran more blood test=normal
OTHER SYMPTOMS IN 2008-2009:

INVOLUNTARY MOVEMENTS / TWTICHED CONTINUE

ALL MOUTH SYMPTOMS CONTINUE

GASPING FOR AIR (take in a huge gasp of air, happens randomly, a several times daily)

LEG WEAKNESS / PAIN

INSIDE ELBOW AND MIDDLE FINGER, LOWER BACK AND BIG TOE PAIN

FATIGUE

HIGH PULSE 130+ doing nothing

HIGH BLOOD PRESSURE 145/97 average

HEART HURTS (just occasionally)

EAR ACHES/RINGS (CT of sinus area was normal)

NIGHT SWEATS (occasionally / only on head/neck area)

NECK HUMP

SKIN (acne, ichy, sweaty)
1-09

Tests or Treatments tried: Tried depression pills for 2 months with no help. I do not believe I have depression/anxiety issues though.
3-09

Tests or Treatments tried: Went on another fun trip to Disney World – had very strong symptoms most days
3-09

WEIGHT GAIN: (necklace didn’t even fit because my neck / stomach is getting fat).

Cortisol level checked and was high, so Endo specialist was recommended).
5-09

DIAGNOSED WITH CUSHING’S

4x6mm tumor on pituitary and high cortisol level. Scheduled for consult/surgery at Mayo in July.
7-09

UNDIAGNOISED and called Borderline Cushing because symptoms not are typical of Cushings.

They reviewed MRI – says its either a tumor or a rathke’s cleft cyst

CHEST XRAY – normal

EKG – normal

EMG – normal

ENT Dr. – normal exam – cannot explain mouth symptoms

COLONOSCOPY

MAMMOGRAM

DERMOTOLOGY – skin cancer diagnosed, shaved and treated

MRI on neck & spine- normal

EEG – normal

CERVICAL SPINE MRI – normal

MOVEMENT LAB: my movements don’t fall into the myroclonis catagory because I move faster than 100 milliseconds (?), even though they are a split second movement

SENSORY PROVOKED POTENTIAL NEUROLOGY LAB – normal

DEX SUPPRESSION & CRH & CORTISOL TEST, did not suppress, and had high and normal cortisol

OTHER URINE AND BLOOD TEST

PARANEOPLASTIC PANEL blood work – results show striated muscle antibodies which is either a neuro, myasthenia gravis, or a hidden tumor so get a lung scan recommended
9-09

LUNG/ADRENA CT SCAN: did not show lung tumor but showed enlarged or nodules on both adrenal glands
10-09

blood test & urine- (did 24 hr urinary metanephrines and fractionated catecholamines and blood aldosterone concentration and renin activity – all normal) (cortisol at highest end of normal)
11-09

new MRI – same as before
12-09

new CT of adrenals – no change. Await new results of striated muscle antibody test.

Dr recommends I wait 6 months to see what changes.
6-10

bi-lateral neuro angiogram confirms Pit. Cushings
Pituitary Surgery May 12, 2010
Back to work after 2 weeks. Its been 1 month since surgery and muscle pain and weekness is gone, heart pounding gone, high blood pressure down, but still have unusual symptoms such as involuntary movements and mouth symptoms. Still have enlarged adrenals.

 

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