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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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Roxanna (Dawn), Undiagnosed Bio

5 Comments

I’m writing because im frustrated and sad. Today I got my results and doctor says negative for Cushings .
CORTISOL, FREE 24 HOUR.
F CORTISOL, FREE, URINE 36.2 Range 4.0 to 50.0

I have another appointment with an assistant to an Endocronologist but that’s not until next month March. I’m tiered of waiting.

I’m fatigued all the time. Insomnia. Emotional and currently tapering off venlafaxine. Lots of hair for a female. Camel hump.

Large abdomen. Low thyroid and high testosterone. Purple stretch marks. Edema in ankles and legs. Extreme joint paint and vitamin D deficiency. My teeth are decaying. I gained 50-60 pounds in 1.5years. Memory issues. Prediabetic and some hypoglycemia. Blurry vision sometimes.

I was hoping finally I would get treatment. I want to get an answer and help. I want to live again. I want to one day have anther child. I just know that I cannot plan on moving forward with life without taking care of this. I feel like I’m just in a hole.

I’m 31 years old.

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J Stone (J Stone), Pituitary Bio

1 Comment

 

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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Crystal (Crystal), Pituitary Bio

3 Comments

 

Hi, my name is Crystal and I’m new. I’m a 35 yr.old mother of a 5 yr. old with more energy in her little pinky than I have in an entire day and I’m married to an amazing man, who makes living with this possible.

I was finally diagnosed with Cushing’s Disease (excreting pituitary tumor). In April 2017. I had the typical doctor who didn’t believe me so I took it into my own hands and figured out what I thought was going on….Cushings without a doubt in my mind.

So I went to a naturopath and asked her to order me a 24 hr. urine test and when she got it she said I need to go to an endo asap. I had already made appointments with two, one being at OHSU in Oregon with one of the best pit. teams in the US. I only live 2 hrs. away and am sooo lucky for that. I know many people have to travel much further to get the best healthcare for this.

Anyways, the endo I saw in Portland looked at me and immediately and said I had a very cushoid appearance and that we needed to do about 6 tests in the next two weeks. I did the tests, then had to do an MRI, which showed a 5×4 tumor in my pituitary gland, next was an IPSS to make sure it was 100% pituitary and not ectopic coming from somewhere else in my body. Once this was all confirmed I was scheduled for surgery in June.

As my surgery date approached, my symptoms got significantly worse and I finally called my endo to tell them. The nurse told me I had to deal with it until surgery and that there was nothing tI could do about my symptoms. Within 5 minutes of hanging up the assistant to the neurosurgeon called and told me surgery was being moved to the following week which was four days away. I had the transsphenoidal surgery about 6 weeks ago and my cortisol dropped to 0.6 in less than 24 hours after surgery. The neurosurgeon said I was technically in remission and although I’m happy, it seems to good to be true after the last couple years I’ve had. I came to this site looking for information on recovery. I know everyone is different and I was warned a little bit about it, but I’m pretty miserable and very curious how others recoveries are going.

Thanks, glad to be here. Crystal

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Suzanne (Suzanna), Undiagnosed Bio

1 Comment

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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Elizabeth, Pituitary/Adrenal Bio

2 Comments

golden-oldie

 

Originally posted September 24, 2008

Hi my name is Elizabeth (Liz or Lisa). I am a 32 year old who has possible cushings. In October of 2005 I was diagnosised with an adrenal tumor on my left adrenal gland. At the time I contacted my PCP to get a referral to an Endo doc. I was then seen by an endo doc who had ran some tests to meassure my cortisol levels which, of course, came back normal.

I then continued to gain more and more weight and was getting more and more stretch marks as well as facial hair. I have suffered from headaches for years and had begun to suffer from extreme fatigue and body/limb weakness.

This time last year my mom was reading a Weight Watchers magazine and read a story from a lady that had the same signs. She thought that she was gaining weight and getting stretch marks due to a pregnancy but had a hard time believing thats all it was. So this lady went to a specialist and they tested her for cushings and ended up finding out that’s what she had and of course the tumor. They performed the surgery to remove her gland and she immediately lost 20 lbs and felt so much better. So my mom and I began to research this disease online and discovered that this sounded exactly what I have and was going through.

I then took this information to my endo who began testing me more and more. We had finally found an elevated reading of cortisol from my urine in December 2007. He then send me for a MRI to rule out the pituitary tumor in January 2008. With surprise to everyone, I ended up having a pituitary tumor as well.

At this time, my doc decided to send me to the Mayo Clinic in Minnesota to see a Cushings specialist. With a lot of time and money, the doc at the Mayo advised that he was unable to diagnosis cushings based off of one elevated reading. None of the tests that were performed at the mayo clinic came back elevated. I then went home in tears and disappointment. I have been continuing to go through 24 hour urine testing and pretty much everything else and no luck but just 1 more elevated reading.

This has been one of the hardest things that I have ever gone through in my life. I used to weigh 125-135 lbs and had a beautiful body and such confidence in myself. Now, I am almost 100 lbs more and have a body that is a cross between a zebra and railroad tracks with facial hair like a man. My mental health has gone completely down the drain and I am on the verge of tears everyday all day long. My dating life has gone from having someone in my life for years to nothing due to my moods and self confidence. There are times that I feel like I am going to loose it. Like I just can’t take this any more. I try my very best to watch my diet and exercise and I still gain the weight.

My endo doc here at home just this week consulted with the doc at the mayo and they just can’t figure out why the readings aren’t coming back elevated. They definately say that my physical appearance is cushings. So we just continue to test and test until, hopefully, that day comes to end this horrible disease.

It has been so great to know that they are other people out there feeling and going through the same things as I am. It does help to know that I’m not the only one going crazy over this. With luck and prayers, hopefully the next time i am writing is to say that I have to go ahead for surgery. For everyone out there, try to keep positive thoughts!

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Lisa (Lisa), Undiagnosed Bio

1 Comment

undiagnosed4

 

44 yo female
have been overweight for a while
always fatigue, muscle aches, pain/joint all I related to weight
only history is hypothyroid been on synthroid since 15ish
recently had UTI that was resistant to lots of abx then developed a bronchitis to pneumonia
then the UTI came back was on prednisone at start of pneumonia for 14 days then developed pain in left side and arm cardiac negative and high blood pressure out of blue
been worked up for carcinoid syndrome – neg
VMA and metanephrine – Neg
Lupus – neg
they have no idea why bp so high all of sudden i have palp with it
always notice muscle weakness I never have any strength
extremities tingle at times
but face has had horrible red butterfly redness dr doesn’t like
now wants me to be worked for cushing going to do 24 urine tomorrow
but i have had ct scans of abd and chest and one ct angio of chest showed a tiny tiny adenoma on left adrenal gland the radiologist said so small that they may not even comment on it
i do have the fat in neck/ shoulder/back
i just feel off not myself almost shaky inside i have no desire to do any activity although i know i need to

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