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Brian (Brian), Adrenal Bio

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In 2011, I realized I had Cushing’s Syndrome. I was a 30 year old male with several complications: swollen feet, swollen legs, stomach looked 9 months pregnant, hair fell out, memory loss, couldn’t sleep, couldn’t eat, diabetes, mood swings, depression, urination every hour during the night, bright pink stretch marks, etc.

After changing my doctors several times for misdiagnosis, I was finally tested for Cushing’s Disease/Syndrome. I contacted the National Institute of Health and doctors advised me to come in immediately. I survived 2 months living at NIH, while doctors ran several tests to determine if I had Cushing’s Disease or Cushing’s Syndrome. I had Cushing’s Syndrome and my tumor was found in my right adrenal gland.

After sucessful surgery, I did not have the energy to get out of the bed for almost a month. I was taking almost 10 pills per day including cortisol, high blood pressure medication, potassium, etc. I lost 40 pounds after surgery going from 208 pounds to 168 pounds and after 6 months, I was taken off all medication. I beat Cushing’s Syndrome and Diabetes!

Now, I am 32 years old. I am in great shape and finally got my life back. I do not have any complications. The only sign of Cushing’s Syndrome are the stretch marks and a scar from removing the tumor from my adrenal gland.

I just wanted to meet other people going through a bad disease and help out if possible. I am here if anyone has questions or just want to talk.

~ Brian

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H. Lane (Sunshine), Undiagnosed Bio

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I have a giant buffalo hump on the back of the neck with vertical blue/purple lines below it.

I also have lipomas not symetrical across my upper back.  Then there are two symetrical lumps near each arm pit.

Two lab results come back saying I have a normal cortisol level.

I am diabetic, type 2, with high blood pressure, and only slightly elevated cholesterol levels.

I am wondering if I may have Cushings as well as Madelung’s disease.  I am very confused.

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Trish D (trishtd), Undiagnosed Bio

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I am the mother of a young woman who has been ill for over fifteen years.

As a very young woman – at her 21st birthday and engagement party, she was a size ten and in very good health.  She was a healthy child who grew up in a home where sound nutrition was practised. This is an endeavour she has carried into her own married life, leading a very healthy lifestyle and preferring organic food.

She has never smoked, drunk or used any illicit substance.  She ought be very healthy.

Over the past few years she has been increasingly ill.  Extreme fatigue, massive weight gain, in the upper body and around what used to be her waist.  She has the classic moon face, with no distinguishable jawline or cheekbones. She has a great deal of fat around her neck and a defined ‘buffalo hump’.

She has had a variety of ‘tests’ done by conventional pracitioners, with a diagnosis of Poly Ovarian Cystic Syndrome.  I believe she has Cushings and have encouraged her to seek alternative help.  She has ‘given up’ on doctors as she feels as if she has been treated with disdain.   She has a remarkably positive attitude and a husband who is very loving and supportive.

She does not have the ‘stretch marks’ of Cushings, but my understanding is that that is not a prerequisite.  I have become increasingly concerned about her each time I visit, which is at times, with a few months between seeing her and cried all the way home after the last one, such is the increasing change I see in her.

I am concerned the outcome will be fatal and have finally encouraged her to see another doctor here.   I want to take her to a doctor who is holistic in their attitude, something that seems hard to find.

She is now 40 and nearing the end of her potential child bearing time. I am sad for her that a misdiagnosis and frustration at achieving no result, will not only potentially be fatal, but that the goal of motherhood for her, can not be achieved.

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Rosemary (Berry), Undiagnosed Bio

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No formal diagnosis yet.  Self-diagnosis by overhwhelming clinical suspicion, including CT scan evidence of growing left adrenal adenoma.

Clueless endrocrinologist who has missed the diagnosis for the whole two years I have been consulting her, including missing an acute state caused by prescribed Prednisone that resulted in my being pushed into her office in a wheelchair.  She didn’t even comment on that. :-O

I am booked in to see another endocrinologist in late January – the earliest appointment I could get.  Meanwhile I have some fairly serious symptoms that are getting worse.  I hope I make it to surgery.

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Donna (Dutchie), Pituitary Bio

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Hi.  I’m a patient of Dr. F and a member of the Cushing’s  Help and Support FB community.

I have a pituitary microadenoma and am still doing all kinds of testing to see if it is active.  I’ve gotten two clinically high indicative Cushing’s test results so far–midnight serum cortisol of 14 and 24 hour uring 17OHS of 11.5.

We are still testing.

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Margaret D (MargaretD), Pituitary Bio

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Original Bio:

My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.

Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.

In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.

My symptoms kept getting worse with time.

In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.

As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.

In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.

Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.

We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.

I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.

I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.

I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.

I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…

Update December 12, 2013:

It’s been 10 years now since I had my “cure” for Cushings.  I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy.  I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.

I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back!  Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.

Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings.  God Bless to all!

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Laree (Laree), Pituitary Bio

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My Thanksgiving Day was less stressful this year than I thought it might be, because I had my head examined the day before at Johns Hopkins at about 9:30 in the morning.  By 1:30 in the afternoon, my endocrinologist there, a metabolic bone specialist, had emailed me that I was the proud parent of a 0.7mm lesion on the right side of my pituitary gland.  All day Tuesday I had performance anxiety because I feared that after six months of testing every liquid my body could produce for excessive cortisol, I had finally been given the green light to undergo the Holy Grail of tests and have a look-see at the Master Gland.  I feared that I wouldn’t be able to come up with the goods, but I managed to produce, and now I’m being referred to a neurosurgeon.

It’s been a very long process, even though the testing has only been a six month part of it.  In 2001, I broke  my collar bone while playing tennis.  Granted, I fell down, but it’s not like I made a Boris Becker leap for the ball or anything.  Then in 2003, my first stress fracture, followed by another one in 2005.  Then a crushed wrist on another tennis court mishap–my feet got tangled up when I was moving backward, and within a week, I was having my wrist rebuilt with a titanium plate and several screws.  Then there was  the broken tailbone, followed by the upper arm compression fracture suffered while pushing a small car off an ice shelf in Ohio.  And finally the L4 vertebra that I broke loosening the lug nuts on a tire I was changing with my still-healing broken arm.

After each incident, I would ask the doctors what could be causing all these weird bone breaks, and sometimes they would send me off for a dexascan to see if I might have osteoporosis, but the test always said no, and the doctors were always orthopedists of one sort or another.  They would shrug and say that these things happen.  After the upper arm (this past January), and the subsequent dexascan, the ortho told me that the test said I didn’t have osteoporosis, that if I wanted to try to learn more about the bone formation, I should see an endocrinologist, but he didn’t know of one to whom he could refer me.  He did refer me to his colleague to have my osteoarthritic hip replaced.  I’m 53, by the way.  He told me that going to an endocrinologist was likely to yield nothing, and he opined that I was suffering from “Laree Martin syndrome,” if I need for it to have a name.

My gynocologist, who works in the same hospital center as Ortho 1, we now lovingly refer to him as Frick, referred me to an endocrinologist who also practices in the same hospital center.   I got myself hooked up with her, and she very quickly determined that since I had broken not one, but all of the bones that are considered to be typical indicators of osteoporosis, despite multiple dexascans to the contrary, I had osteoporosis.  Shortly thereafter, she discovered excess, but “unimpressive,” levels of cortisol in my system.

Ortho 2, we’ll call him Frack, saw me prior to my hip replacement, and I complained about my back injury the week prior.  He pronounced that I had not broken my vertebra, but he offered to send me for an MRI, if that would make me feel better.  I scheduled the MRI, had it in the evening, called his office in the morning to report that I had gone for the test, as he had asked me to do, and instead of leaving a message, I got put directly through to the doctor.  Turns out that he was wrong, and it is possible to break your L4 vertebra pulling on a lug wrench with a still-healing compressions fracture in your upper arm . . .  if you have osteoporosis.  When I told him that he didn’t have to worry about my bones in general, because I was seeing an endocrinologist for that.  I just needed him to be extra careful not to break anything when implanting the new hip.  I told him that the endo specialist was working me up for Cushing’s, and he told me that I certainly did not have Cushing’s, because I wasn’t 100 pounds overweight and diabetic.

By September, the endo doc concluded that my results were equivocal for Cushing’s, but she encouraged me to go to Johns Hopkins to the metabolic bone specialist, since there wasn’t another good explanation for my osteoporosis, which had by that time been objectively diagnosed with a bone biopsy.  She felt that she had no choice, clinically, but to treat my osteoporosis as post-menopausal in origin, even though my bone breaks began 8 years ahead of my menopausal symptoms.  Off to Johns Hopkins.

The bone specialist took the history, again . . . did some more testing (blood, saliva, urine, again . . . ) and then consulted with the adrenal team, who agreed with her diagnosis of ACTH-dependent Cushing’s disease.  Unfortunately for all of you who read these bios, it’s more complicated than just Cushing’s, because I had bilateral pulmonary emboili and a DVT in my leg when one of my stress fractures had me on non-weightbearing restrictions for six weeks.  That little incident was also considered a fluke, until about six years later when I was diagnosed with an autoimmune condition that is also considered to be “rare.”  It is a mouthful to say–antiphospholipid antibody syndrome (APS).  It’s main risk is hypercoagulability, and its treatment involves lifelong warfarin (brand name Coumadin), which people mostly call a “blood thinner,” although it doesn’t really act that way.

I feel somehow more than lucky to have two fairly uncommon, fairly complicated conditions with fairly scarey treatment options.  I feel like I need a Fairy Goddoctor to be able to properly manage my surgery and treatment, because of the risks associated with drug interactions with the warfarin, the higher risk of clotting that I already have from the APS, which is apparently compounded by Cushing’s, and my understanding that I’m not supposed to be mixing hormones, including steroids, with the warfarin.  Nevertheless, it was good to know so quickly after the MRI that the result was that I flunked that test as well as I had flunked all the others previously.  I thought I was going to have to stress over that for the entire long weekend, but no.  Instead, I pretty much put it out of my mind until tonight, and now you’re getting the Reader’s Digest version of the last 12 years of my medical experience.

The doctors have exhausted my resilience with all of their certainty, which over the years I relied upon to conclude that I was just clumsy and that my weight struggles with those extra 25 pounds that could pack on in a couple of months, especially when I was recuperating from a fracture, without really changing my diet much, were probably associated with my inconsistent sleep and the fact that I will reach for pizza when I am feeling particularly low.  So when I read here and there about the recovery process after surgery and how difficullt and complicated it can be, I have to admit that my first reaction was that I should quit work, take a year off, spend all my money on travel or whatever I would feel like doing, and then just commit suicide and be done with the whole thing.  And that still has a sense of comfort associated with it when I remind myself of what I’m in for for the next maybe couple of years or more in recovery . . . and possible relapse . . .

But I have a 82 year old mother, and I”m her baby, and I witnessed her sorrow when my brother was killed in a motorcycle accident about 18 months ago, and I wouldn’t put her through that again.  Instead, it’s my intention to take as much time off work as possible after surgery to let myself gather my emotional resources and get over the angry, bruised feeling that I have from both diagnostic processes that have lasted over a decade.  I appreciate that this space is here for newbies like myself to say out loud what most of my friends and family either can’t or don’t want to hear.  It doesn’t really matter so much that anyone is listening; I just need to say it.

Cheers!

Laree (who actually has Cushing’s disease, not Laree Martin’s syndrome)

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