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Denise, In the Media

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Cushing’s survivor hopes to make others aware of illness

July 16, 2007

Denise Potter, who works at the Christus Schumpert Highland Hospital as a mammographer, has Cushing’s disease which affects the performance of the pituitary gland. Greg Pearson/The Times 07.12.07 (Greg Pearson/The Times)

Cushing’s Help and Support: http://www.cushings-help.com/
National Institutes of Health: http://endocrine.niddk.nih.gov/pubs/cushings/cushings.htm
Oregon Health & Science University: www.ohsupituitary.com/patients/print/cushings.html

By Mary Jimenez
maryjimenez@gannett.com

Denise Potter never connected her rapid weight gain to a disease or her high blood pressure to anything but her weight.

The hump on the base of her neck was a feature she supposed came with the weight.

And although the roundness and redness in her face was odd, she never connected it to the other symptoms she was having or the fatigue, heart palpitations and swelling she begin to experience in her 30s.

And neither did a stream of doctors over the decade when Potter’s symptoms related to Cushing’s disease began. It would take another two years after diagnosis to find a treatment that worked.

“You can see my face getting real round in this picture. They call that a ‘moon’ face,'” said Potter, 42, looking over a handful of photos that showed the progression of the disease, diagnosed when she was 37. “You learn one of the best ways to show doctors the changes happening is to bring pictures with you to appointments.”

Potter, who works as a mammographer at Christus Schumpert Highland Hospital in Shreveport, calls herself lucky to be working and functioning in life as well as she is.

“I only hope by telling my story someone else can be diagnosed sooner,” she said.

According to the National Institutes of Health, Cushing’s disease is a form of Cushing’s syndrome — caused by the overproduction of cortisol over a long period of time.

Cortisol is a hormone produced by the adrenal glands and essential to many of the body’s cardiovascular and metabolic functions. It also helps the body respond to stress.

Cushing’s disease is specifically caused by a hormone-producing tumor on the pituitary gland.

About 1,000 people each year in the U.S. are told they have a form of Cushing’s, but those affected think many more cases go undiagnosed.

“Making people aware of the disease is the name of the game,” said Louise Pace, founder and president of Cushing’s Support and Research Foundation Inc., based in Boston, Mass. “There’s a chance for 100 percent recovery if you get diagnosed soon enough. But not too many do. Out of the 1,000 members I have, only two are 100 percent cured and they both got diagnosed within a year. It took me five years. The longer you go, the more damage it does.”

In addition to feature changes, left undiagnosed the disease can cause associated diseases such as diabetes mellitus, hypertension and osteoporosis.

“It’s such a difficult disease to catch. It’s different from one patient to another. And for a lot of people it cycles. Doctors miss it unless they do particular tests,” said Warren Potter, Denise’s husband, whose gained a strong medical knowledge about the disease. “It’s amazing how much you learn about medicine when you have to.”

Warren Potter, originally from New Zealand, has lived in the states now for about eight years and met Denise online by chance while he was living in Tennessee.

He gives luck a large role in his wife’s diagnosis.

“At one stage she found a doctor who wasn’t too far out of medical school,” said Warren of the young doctor his wife went to in 2003 for her high blood pressure that would diagnose the disease.

“He was very worried about my blood pressure being 215 over 105 (a healthy adult is around 120/80) and began asking other questions,” said Potter, who’d also experienced an extreme, rapid weight gain. “I’d always been around 135 pounds but in my 30s my weight jumped up to 300 pounds. I knew my eating hadn’t changed enough for that much weight gain.”

Headaches and later migraines that Potter experienced throughout her life also began to make sense with a Cushing’s diagnosis. More than one eye doctor thought there might be something else going on there, but were looking on the brain not the pituitary gland where a tumor that causes Cushing’s disease sits.

A 24-hour urine collection was enough to prove that Potter’s cortisol levels were high, but not enough to pinpoint why.

Cushing’s syndrome can be caused by myriad of reasons, according to the National Institutes of Health.

A person who takes excessive amounts of steroids for inflammatory diseases or other reasons can suffer the symptoms of Cushing’s. Also a number of things can go wrong in the precise chain of events needed to produce cortisol.

It all starts with the hypothalamus that secretes corticotropin releasing hormone that tells the pituitary to produce adrenocorticotropin, which then stimulates the adrenal glands to produce cortisol that’s dumped into the bloodstream.

Potter’s tumor was confirmed with a magnetic resonance imaging of the pituitary.

The cure is surgical resection of the tumor, states the NIH, with about 80 percent success rate.

Potter’s first surgery done at Vanderbilt University Medical Center in Nashville, Tenn., failed as did another attempt to shrink it with radiation.

Potter and her husband took a bold step they both felt was her best chance for a cure.

“We moved to Oregon where the best specialist in the country was,” said Potter, who was treated by Dr. William Ludlam, an endocrinologist. “I liked him immediately. He thought maybe my first surgery hadn’t been done quite right and wanted to try it again.”

When a second surgery done at the Oregon Health and Science University also failed, Potter and her doctor made the decision to remove both her adrenal glands in 2005.

The surgery took away her body’s ability to produce cortisol, which is now replaced orally. She’s also taking other hormones that are no longer produced by a damaged pituitary.

“On the endocrine aspect it’s all guess work to the levels of medication that works to make her feel relatively normal. We learn to tweak it when she needs to,” Warren said. “We’re lucky in a lot of ways that the disease was caught in time. She did not get the cure from the tumor being removed and she has other symptoms, but they can be treated.”

The Potters moved to Shreveport late in 2005 to be closer to her parents. An endocrinologist follows her hormone replacement therapy.

“I’ve lost 70 pounds, but because my age and the length of years I had the disease, my recovery will be slower,” said Potter, who takes 10 pills and one injection daily to manage her hormones and diabetes. “It’s also caused some memory loss that I still can’t access.”

Potter and others affected by the disease think experts are underestimating the number of cases.

“I see people all the time that look they are walking around with similar symptoms as I use to have,” she said. “I hope this makes people more aware of the disease.”

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Suzanne (Suzanna), Undiagnosed Bio

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Hi all,
Looking for some knowledge as I feel like my GP had been really unhelpful over this.

So I went to see him for some infected bites a few weeks ago. It’s really difficult to get an appointment with him so while I was there I figured I would mention my water retention. I’ve suffered with this on and off all my life (I’m 35) but lately it’s been a lot worse. I suspect my contraceptive pill, it’s called Yasmin (Yaz) and I’ve only been taking this particular one for about 18 months.

He sent me for a full blood MOT (vintamns, full blood count, liver function, thyroid, iron, etc etc, there were about 10 altogether).
The results of these came back and all were fine except the Cortisol level. I knew what this was because I’m a dog trainer/behaviourist and in dogs, Cortisol is referred to as the stress hormone. GP said a normal morning level was between about 166-507….mine came back as 1023!

He ordered a repeat Cortisol blood test and a 24 hour urine test. I’m still waiting on the results of the urine test but the second bloods came back yesterday at a level of 798. Obviously still very high, although lower than the first time. He says it’s likely I have Cushings. Cue massive panic as Cushings is very common in dogd and I have cared for a lot with it and it really isn’t very pleasant in dogs 😦

GP says it’s caused by a tumour and I will have to have medication and/or an MRI scan and possibly brain surgery. I seriously do not fancy this when my only complaint is water retention!!

I do have quite a busy life, I work as a dog trainer and also run around after a five year old. I’m a naturally stressy person too, and worry excessively about things that don’t really need to be worried about.

My GP, when asked whether this could be caused by my pill, said no. But the other symptoms I get with this pill are occasional heart palpitations, mood swings, a feeling of buzzing sometimes, like adrenaline is coursing through me (I’ve always thought it was the estrogen?!) and increased appetite for sweet things and wanting to eat junk all the time.

My Herbalist is almost certain this pill is causing my hormone problems and is responsible for the high Cortisol levels. So I’ve decided to stop taking it for a couple of months and ask for a repeat test and see if it has made any difference. My Herbalist has also recommended Hemaplex and something called Ashwanganda.

My GP’s current plan of action is ‘wait for the 24 hour urine test results and then refer to one hormone specialist or another’.
Does anyone have a similar experience that could help me? Many thanks in advance 🙂

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Cathy L (CathyL), Pituitary Bio

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I am 55 years old and my symptoms began long ago I believe.  I have had my tumor out and have not had any recurrance since 2009 when I had it out but unfortunately am still a little paranoid (to the extent that I will spend $100 on a saliva test once or twice a year) when I have any symptoms.

1998 out of the blue started having heart palpatations at night ( endocrinologist still insists that was not part of it but it stopped when my tumor was removed!!!(So far have yet to find an endocrinologist that I love…very narrow minded and refuse to admit how little they really know about Cushings).

2003 started Natural Progesterone cream due to fibrocystic breasts and low libido & just general breast cancer prevention.  No MD ever had a problem with that.

2005 – 1st saliva test just personal curiosity about hormone levels.

2006 started feeling lump in my throat when swallowing so went to ENT —found nothing out of the ordinary (with 20/20 hindsight suspect it was the supraclavicular swelling starting internally.

2007 upper GI just to be sure nothing in my throat per ENT referral–found nothing.

2007 starting to show supraclavicular fat pads 2 MDs & 2 surgeons seen for those & none of them picked up on the Cushings from that. Also had complained to my OBGYN @ the sensation of my uterus dropping out of my vagina — he saw no physical reason for this sensation but with cental obesity getting slowly worse (155 compared to my normal 135 lbs) i suspect there was downward pressure esp when walking & standing for long periods of time.

Finally in 2008 one of my MD patients suggested Cushings & BINGO everybody suddenly saw the light.  Abdominal CTs showed no adrenal problems MRI showed 5mm microadenoma (well circumscribed) .

My brother in law is a neuro-surgeon & in our area if you ever have anything weird going on you go to Duke but he said in this particular area you want UVA (a “Pituitary Center of Excellence”).  Dr. Ed Oldfield took out my tumor & so far so good.  I had to supplement cortisal at first but within 6 months I was off it & my body was making its own.  I feel that I was very lucky.  They say that the majority of MDs go thru their entire career without seeing a case of Cushings (OR knowing that’s what they are looking at). I would definately recommend not just letting any Joe-Blow neurosurgeon do your surgery – the more they have done the more likely the success.

I’m sorry this IS an update of my just submitted bio & I don’t know what my URL link is.   But I do feel that the 4 time cortisol saliva test was how mine was diagnosed because my morning cortisol which is all the MDs ever wanted to take was never off the charts IT WAS MY PM CORTISOL that gave it away.  Then total urinary cortisol measurement.  Sorry but I thought this was an important addition.  Yayy saliva testing!!!

Contact Cathy Leigh, DDS here.

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Patty L (Answer hungry), Undiagnosed Bio

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I’m a 33 year old female.  I have 3 young boys ages 8, 5 & 2.

About 1 year ago I started suffering from chronic fatigue to the point of crying halfway thru my work day not knowing how I was going to make it thru the rest of the day.  I went to my primary physician who stated I might need to have my thryroid rechecked.  I was previously diagnosed with hypothryroid but on a real low dose of Levothryroxine.  He ran some blood work and the test came back normal but with deficiencies in my B-12 & Viamin D.  He suggested I try a multivitamin.  I went out and splurged on the best vitamins I could find but they were of no help.

I returned after experiencing palpitations and dizziness.  I was then diagnosed with Vertigo and given meds that only made me more sleepy so I stoped taking them.  I noticed I was gaining weight even though at this time I was running 3 miles 4X/wk and loging in my meals.

My PCP thought I was suffering from depression because I cried at one of my appointments out of frustration because I just waned to make it thru a day without feeling tiered.  He suggested I take a sleep study test to check for insomnia.  The test came back cleared saying other than fallling asleep faster than usual patients nothing else was wrong.

I was referred to a cardiologist becasue I was also feeling extremely cold  and had a difficult time performing the same tasks I was able to do wihtout any problems months earlier.  I kept insisting I had a lot of the syptoms I had previous to start on meds for my hypothyroidism but because the blood work came back normal they said they could not change my meds.

I read somewhere about secondoray hypothyroidsm and requested a referal to an endocronologists.  My PCP felt there was no reason as everything came back normal but I pleaded until he gave in and authorized my referral.

I went to see my endocronologist for the first time and for some reason after telling her what I was experiencing she told me my issues could range from anemia to Multiple Sclerois but she also wanted to check for something extremely rare…..did not give me a name.  She requested blood work and sent me home with 3 cottong swabs she wanted me to saturate between 11 pm – 12 am, stick them in the fridge and return to their lab as soon as I was done.  I did this and she called me stating the tests came back abnormal and she wanted me to do another tests.  She was very vague about providing me with information other than assuring me that what she was testing me for was extremely rare and it was probably false results.  She told me not too panic and just go about life as usual.

I came home with a 24 hour urine collection container and another round of saliva tests.  I got a call from her nurse stating everything was normal.  I insisted I wanted a f/u visit with the Dr.   At the time of my visit she stated she was happy I had insisted on another appointment because the saliva test came back abnormal, but only on one of the swabs.

This time I came prepared with a list of symptoms and my own depression screening test (I’m a social worker and knew my some of my symptoms were similar to those of people suffering from depression), she took copies but again told me not to worry.  Well the more she told me not to worry the more worried I became and started researching Cushing’s the extrme rare disorder she had been telling me not to worry about.

My husband came across a website called Cushing’s with a Moxie, when I started reading the blog I started to cry I felt like finally someone understood me.  I still don’t have an answer by my Endocronologist but in my head I think I’ve figured it out and as silly as it sounds I’m wishing this is it, finally an answer to my symptoms.

~~~

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Cynthia (K8sMom2002), Adrenal Bio

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The adrenal glands sit atop the kidneys.

The adrenal glands sit atop the kidneys. (Photo credit: Wikipedia

I have just been diagnosed with glaucoma, and I possibly have subclinical Cushings … though I am small (4’10”, 99 pounds), I’ve realized that I have put on an average of a half-pound each month since July of 2012, after years of being fairly stable with my weight.

Also for years I’ve had heart palpitations, a life-long intolerance to cold, and orthostatic hypotension and tachycardia, as well as migraines. I had to push my gyn/onc to get a referral to a endocriniolgist — every doctor seems to think that a “benign” adenoma is an okay one that can be left alone.

Have done an adrenal insufficiency test and will be doing the dex test (two 8 am blood draws) this week.

Marian (MaidM), Adrenal Bio

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Hi!

I have provided a timeline of my Cushing’s related tests and symptoms.

Symptoms since 1994

Diagonsed: August 2012

Surgery:  August 2012

 

Other Key Dates/Symptoms:

1993-2009:  NIght sweats, heart palpitations, difficult losing weight, anxiety

 

2010:

+Kaiser Acupuncturist  checked DHEA levels.  Lowest she had ever seen.

+Referred to Kaiser endocrinologist (Dr. Lee)

+ACTH Very low

+Cortisol moderately high

+Abdomen CT showed 2 cm growth (Mis-read as possible cancer by radiologist)

+MRI showed possible small brain adenoma

+Referred to NIH

+Labs normal

+Reviewed MRI/ CT.  CT showed 2 cm adenoma (benign) and no brain adenoma.  (They said Kaiser overead the MRI and were sure about the CT not showing any cancerous characteristics)

+Initial diagnosis: Psuedo Cushing’s and revised to Cyclical Cushings

 

2012

+Increased symptoms.  Weight gain, hump, fluid retention, moon face, fatigue, irritability

+NIH follow up showed high cortisol (confirmed 2X), low DHEA, low ACTH

+Suppression test confirmed Cushing’s Syndrome

+Bone scan showed 25% bone density loss in 3 years.

+Diagnosis: “Sub Clinical” Cushing’s Syndrome (borderline…I don’t  “look” like Cushiing’s unless you compare before and after photos.

+Repeat CT confirmed benign 2 cm adenoma (no growth)

+Surgery scheduled for Aug 27, 2012.  Re-scheduled for Aug 29, 2012.

 

Hope this helps!

Feel free to contact me,

MaidM

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