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In Memory of Sherry Carlson ~ May 30, 2020

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Sherry passed away the afternoon of May 20, 2020, naturally and peacefully in her sleep.

She loved her community and we know how grateful she was to every one of her friends on here for the genuine love and support she’s received over the years.

We (her family) are processing, but will share details about her celebration of life when we’ve worked it out.

Sherry’s Slideshow:

Cushing’s Help message board member sherryc presented this PowerPoint at Pioneer Pacific College. It took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

She says that it took a lot of work with her failing memory but she did It! She wanted to get the word out about Cushing’s and her journey with this awful disease.

Sherry’s bio:

I have been very ill for many years now, since 1999 that I know of. But it had always come and gone, until 2004 when it decided to stay. At first it was a mystery as to what was wrong. I was seeing a psychiatrist that felt very strong that what I was dealing with was endocrine related. He mentioned a few things that it could be and one was Cushing’s, so I looked it up on the internet and sure enough I had many of the symptoms of Cushing’s disease, moon face, buffalo hump, weight gain, big round belly, red face, very ruddy complexion, acne, nausea, depression, fatigue, hirsutism, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.

I found this support group on the internet at Cushings-help.com and they helped me find Dr.William Ludlam at OHSU. He told me I had a suddle case of Cushing’s and had a pituitary tumor on the right side displacing the pituitary to the left. Although Dr.Ludlam originally saw tumors on both sides, I had a pituitary tumor that seemed to be cyclic. When it turned on I had major Cortisol energy, when it turned off I got very achy, nausea, and very tired. In March of 2006 I was officially diagnosed after 1 long year of testing, and went on to have my first unsuccessful Transphenoidal pituitary surgery 3/23/2006 with Dr. Johnny Delashaw at OHSU. I had a second unsuccessful pituitary surgery 10/12/06 and finally a BLA 11/7/06.

I am now cured of Cushing’s disease 2 1/2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back, damage to soft tissues throughout my body, Diabetes, High lipids, Fatty liver, I have no usable veins, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need in emergency’s. I had my period for 1 year straight so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working hormones any more. I am on all replacement hormones, except DDAVP. I ended up with a new doctor that gave me a severe case of steroid induced Cushing’s. I am still dealing with this aftermath; the details are in my timeline. My timeline will update you as to where I am at now. I will try to keep the timeline updated so you know where I am at as far as getting better.

Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case.

So if you believe you have Cushing’s, get to a specialist that knows Cushing’s disease, don’t waste time on doctors that do not know the disease, it is so worth it in the end to get to the right doctor. This disease is one of the hardest endocrine diseases to diagnose. Cushings_help.com/ founder MaryO has been a lifesaver for me and still is, I have met people from all over the country, over the years I have made many friends that have, had or are still in the diagnostic phase.

I live in a small town of around 10,000 people and I hear all the time, oh I know so and so that had or has a pituitary tumor. What I am finding out is there are a lot of people in this town that have this disease, it is suppose to be rare, one in a million, my next goal is to get my story out and have local people contact me, then start a support group. Maybe get some accurate numbers of actual pituitary/brain tumors and find out why this is happening in this small town. It will be a big adventure but if it saved even one life it will be worth it. I know of 3 definite pituitary Cushing’s cases so far.

My Timeline of illness to diagnosis

3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.

1995-Left breast discharge, surgical biopsy done, lump removal of marble size, this should have signaled a full hormonal work-up, but didn’t. No cancer.

1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia. Weight 130#

1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months. Sick on and off with mystery illness. Tumor was turning on and off.

April 1999-2004-Severe nausea and vomiting, extreme fatigue, weight gain of 50# in about 1 years time, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hirsutism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.

**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.

Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.

Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.

Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s, she ordered 1 UFC and 2 midnight saliva tests, and told me to test when I felt my worst; Tests where low so she felt my symptoms where not due to my endocrine system. Boy was she wrong. I needed to test when I felt good, or high.

Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. He originally thought he saw tumors on both sides, he was right. Lot’s of testing done. Testing did not prove it yet. Dr believes I am Cyclic. It took 1 year for diagnoses from Dr.Ludlam.

April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.

May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic at this point.

June/July 2005-Three TIA like event’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI. Unknown cause. 5 in all now.

August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA like event.

Sep-2005 Neurologist at OHSU ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.

Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.

Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum Cortisol of 34.1, the Midnight Salivaries, Midnight Serum Cortisol, UFC’s and CSS all positive for Cushing’s disease.

March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side bigger than originally though and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.

April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.

April 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s.

June 5, 2006- Off Hydrocortisone stimulated my Cortisol to 24 on the ACTH stim test.

August, 2006- Not cured, testing again!!! I had that gut feeling when I woke from the first surgery. I just knew…

October 12, 2006- Second Pituitary surgery, more tumor on right side, most of my pituitary gland removed. Surgery unsuccessful, still have Cushing’s disease.

November 7, 2006- BLA …soon to be cured of Cushing’s.

Dec 2006/Jan 2007- Very sick due to another blood infection. Lot’s of adrenal crises due to infections. 3 blood infections to date.

November 2008- 2 years out from my BLA and I am still very sick, I traded Cushing’s disease for Addison’s disease, and my body does not like it. Towards the end of my Cushing’s I went full blown, Dr.Ludlam told me this was a progressive disease and in me this was the case. Cushing’s did a lot more damage than ever thought; I have permanent nerve damage to my lower back requiring permanent narcotic pain relief through a pain center, damage to soft tissues throughout my body, diabetes, high lipids, fatty liver (NASH), Osteopenia, I have no usable veins, they are destroyed due to the high Cortisol, I have permanent port-a-cath in now so they can access my veins for blood draws and any IV stuff I may need, I had my period for 1 year straight because of lack of appropriate hormones after my surgeries so I had a full hysterectomy 8/20/08. I am permanently panhypopituitary now, no working pituitary hormones any more at all. I must replace all pituitary hormones, except DDAVP. Please don’t let this scare you, most people are cured and go on to live lives as best they can, and a lot of people are doing very well.

June 21, 2009-Since writing in November I sat on the couch in severe AI until around September when I was put with a doctor that has been seeing Cushing’s patients for 38 years, he put me a on a very high dose of Dexamthasone and Florinef and forgot about me, he ended up with cancer and is no longer seeing patients. In the meantime, I got severe steroid induced Cushing’s and have had severe complications from it. I started falling from atrophied muscles and broke both hips, I ended up in a wheelchair, which I am happy to say I am out of now, had to have surgery on my left hip to pin it, it is still not healing, I am having absorption issues with calcium, iron, vitamins, minerals and meds. So I have to do my DEX by injections. We are now trying to find out why I am having absorption issues. I have a new endo at OHSU Dr.V and he is wonderful. He has brought my steroids down to a safe level and did it slow. He really seems to know his stuff as far as after care. I do not think he does the diagnosis process for Cushing’s. I would definitely go back to Dr.Ludlam if I had to go through it again. But I know there are many other great Cushing’s experts out there, this was just my experience. I know I will get better, but it may be a while. I am still at home handicapped, can barely go to the grocery store and I do not drive as I am on a high dose of Morphine. My goal is to get my pain under a 5 and be able to drive myself around. That is a good goal for now. Then on to finding out why my small town has so many tumors and starting a support group. I just need to get to a point where I feel I can be a good advocate for Cushing’s and right now I can’t. But that is the goal.

Nov 16, 2009

I am still not well, I have broken my ankle, have no idea how, woke up one morning and it was broken. I am almost down to my 1/2 mg of DEX and am happy about that. had 2 surgeries in Sep and Oct on both elbows for ulnar nerve decompression. The first surgery got infected and a week later I had sepsis, which they think I had a small bowel preferation that healed itself. I was ambulanced up to OHSU and was in AI. It was a very rare bowel bacteria running through my blood stream, I was very sick. I just want to get well, but for some reason I am going through one thing after another. I am praying that 2010 will be my year of healing and I will have a good quaility of life then.That is what I am counting on.

UPDATE January 23, 2016

2016: wow has the past few years have been a roller coaster. I don’t know dates because I’m having memory issues at 47 years old.

I have had 5 port-a-caths. I kept getting sepsis and every time they would take me to surgery and remove my port. Then place another when I was better. I have no veins that work. So I received IV port fluids 2-3x a week. I just recently had sepsis, when I get it I have a 50/50 % chance of survival. They removed my port and did not place another. So no more fluids which was for Pots. I had labs done through my port every 2 weeks. Now everything stopped. I am producing small amounts of cortisol. After a BLA.

Intermittently. I am just now starting to feel good for 2 weeks now. I have started the exercise program called T-Tapp. I love it. No jumping or hard moves. 15 min and that’s it. I am a grandma of 2 and one due any day.

So for now I hope I’m on the road to recovery at least the best I can.

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She thought her weight gain was due to giving birth. She learned it was a tumor

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Dr. Irmanie Hemphill, who first thought her weight gain was due to having a baby. Doctors at Cleveland Clinic Florida in Weston diagnosed her with a tumor in the pituitary gland in her brain.

In the summer of 2019, Irmanie Hemphill gained a lot of weight, developed acne and had high blood pressure. She attributed it to her body adjusting from giving birth just six weeks prior.

“I was thinking maybe it was just hormonal changes from having a baby,” said Hemphill, 38, of Pembroke Pines.

But when Hemphill, a family medicine physician, saw that her nails were turning dark and she gained five pounds within a week, she knew it was something more serious.

Blood tests ordered by her physician came back normal, with the exception of high levels of cortisol detected via a urine cortisol test, which she requested after researching her symptoms online.

The next step was to find out where the excess cortisol was coming from: either her kidneys or her adrenal glands, which produce hormones in response to signals from the pituitary gland in the brain.

The first MRI of her brain did not detect anything abnormal, so her endocrinologist attributed her symptoms to her body adjusting post-pregnancy.

Hemphill sought a second opinion at Cleveland Clinic Weston, where more MRIs of her brain, combined with an Inferior Petrosal Sinus Sampling (IPSS) procedure, detected she had a tumor on her pituitary gland. That led her to be diagnosed with Cushing’s Disease — caused by excess cortisol.

TWO TYPES OF PITUITARY TUMORS

There are two types of pituitary tumors: those that produce active hormones, like the one Hemphill had, and those that do not, which grow in size over time and do not manifest symptoms right away.

Hemphill’s tumor was producing adrenocorticotropic hormone (ACTH), which causes the adrenal gland to produce more cortisol.

Many people with Cushing’s Disease experience high blood pressure and high blood sugar, muscle fatigue, easy bruising and brain fog. If left untreated, the condition can lead to pulmonary embolisms, diabetes, osteoporosis, strokes and heart attacks.

“It was a little bit of relief but also sadness,” said Hemphill, of finding out her diagnosis. “I was very happy that I got a diagnosis but now it’s like, what’s the next step?”

LESS INVASIVE WAY TO REMOVE A PITUITARY TUMOR

Hospitals in South Florida are at the forefront in developing new research, techniques and technologies for pituitary tumors.

The tiny bean-shaped pituitary gland is located at the base of the brain and controls many of the body’s hormonal and metabolic functions.

Last June, neurosurgeon Dr. Hamid Borghei-Razavi of Cleveland Clinic Weston removed Hemphill’s pituitary tumor through her nose. This type of procedure allows surgeons to remove the tumor without damaging the brain.

“It’s a less-invasive approach compared to 20 years ago, when pituitary tumors were removed through the cranium,” he said. “Now, with new technologies, more than 95% of pituitary tumors can be removed through the nose.”

The procedure takes just a few hours to complete, based on the size and location of the tumor. Patients usually stay at the hospital for one to two days afterward for observation.

The removal of Hemphill’s tumor, which was three to four millimeters in size, put an end to her Cushing’s Disease and her symptoms, though it took six months to a year for Hemphill to feel normal. (She was prescribed cortisol for six months until her adrenal glands could restart producing cortisol on their own.)

“Sometimes it’s very hard to make a diagnosis for pituitary tumors because we don’t see them in the MRIs,” said Borghei-Razavi.

“We call it MRI Negative Cushing’s Syndrome. It means we don’t see it in the MRI, but the cells are there,” he said.

Borghei-Razavi and Hemphill credit the Inferior Petrosal Sinus Sampling (IPSS) test as pinpointing her tumor. Cleveland Clinic Weston is among only a handful of medical practices in South Florida that use this technique.

Three Ways to Remove the Tumor

Most pituitary tumors are benign. The challenge is when it comes to removing the tumor.

“Pituitary tumors come in all shapes and sizes,” says Dr. Zoukaa Sargi, a head and neck surgeon at Sylvester Comprehensive Cancer Center at the University of Miami.

“There are non-functional tumors that do not secrete hormones that can reach extreme sizes of up to 10 centimeters before coming to medical attention. This is the equivalent of the size of a grapefruit,” he says.

“Then there are functional tumors that produce hormones that are typically discovered much sooner and can be only a few millimeters in size before coming to medical attention. A small proportion, less than 1%, are malignant,” he adds.

There are three treatment options for pituitary tumors: surgical removal, medical therapy and radiation.

“Medical therapy is only applicable in certain functional tumors that produce hormones,” says Dr. Ricardo Komotar, a neurosurgeon who is director of the Sylvester Comprehensive Cancer Center Brain Tumor Initiative.

“Radiation is an option primarily for inoperable tumors with high surgical risk. Surgical removal is the optimal treatment in the vast majority of pituitary cases, conferring the greatest benefit with the lowest morbidity,” he says.

Dr. Rupesh Kotecha, chief of radiosurgery at Miami Cancer Institute (MCI), part of Baptist Health South Florida, says there are a number of different hormones that the pituitary gland can secrete.

“Prolactin is the most common form of pituitary adenoma that’s functioning and accounts for 30% to 50%,” he said.

Excess prolactin can cause the production of breast milk in men and in women who are not pregnant or breastfeeding.

Kotecha said the next most common are growth-hormone secreting tumors, which occur in 10% of patients.

ACTH-secreting adenomas — the kind that Hemphill had — account for 5% of patients, while 1% secrete TSH, which causes the thyroid gland to be overactive.

MCI’s Proton Therapy delivers high-dose radiation that treats the tumor’s area, allowing for surrounding tissues and organs to be spared from the effects of radiation.

“The pituitary gland essentially sits in the middle of the brain,” says Kotecha. “It’s sitting in the middle of all of these critical structures.”

From https://www.miamiherald.com/living/health-fitness/article251653033.html

Joanna, Undiagnosed Bio

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Im a 41 year old female currently in the very beginning stages of testing. Im pending results of a 24 hour urine cortisol and will be completing the 1 mg dexamethasone suppression test shortly.

My symptoms are buffalo hump, thin arms and thinner legs, fatigue, extreme leg aching, skin feels loke its sunburned, high triglycerides, high cholesterol, weight gain, hair growth on face, the list goes on and on and on.

I was tested for adrenal issues in 2017 and administered the 1 hour ACTH test which came back normal. At that time i was diagnosed with hypothyroid, and elevated testosterone. I recently changed health insurance and had to find a new PCP. At my initial appt i mentioned my buffalo hump was getting worse.

I had a ultrasound done where the “Findings suspicious for hypertrophy in the neck fat pad which could represent fat redistribution syndrome”. These findings were what kicked off the Cushings testing. Ive gained  40lbs in the last 4 months with no change to my diet.

Im just praying that i can find some answers because Im miserable and want to live a very full and productive life.

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In Memory of Patti ~ May 2, 2002

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in-memory

Thursday May 2, 2002

From the Message Boards: ” I loved her, she was a great friend. She died of adrenal cortical carcinoma.”

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