I’m so tired I think about giving up on finding out why I’m so sick. I’m just so tired. But I won’t give up I believe these symptoms are at their beginning stages of cushings.. I want this taken care of before it becomes heart related… I have been seeing an oncologist/hemotolgist/internist..He said because I have the supraclavicular fat pads usually a sign of too much cortisol and a 1.5 cm adrenal adenoma that sometimes releases too much cortisol into the blood that he is scheduling me with an endocrinologist and a rhematologist… there are many test involved to diagnose cushings syndrome. .. I pretty much have them all except the heart problem thank goodness… and no red marks.
I guess my first step is to see if the adrenal tumor is releasing cortisol. .. then we will see what happens. ..I almost convinced myself that I was a hypochondriac, but I still kept getting sick. I have seen numerous doctors ..The main symptoms that bother me are the supraclavicular pads…the adrenal tumor, the b12 deficiency anemia, the fatty liver, weight gain mainly in my tummy, the unexplained flank pain, glucose reading of a 100 in my urine (when there should be none). My alkaline phosphatase reading of 126…and blah. .
Sometimes I am so sick I end up in the ER, but get no answers. This last visit was horrible; I waited in the lobby 5 hours and asked my husband to tell them the pain was getting really bad.
My last ER visit was at Saint Mary’s on 6/4/2015. (I had a severe migraine, right side abdominal pain, aching left arm and leg, and upper back squeezing pain). The test St. Mary’s did are online and after reading them I was thinking should I be checked for Cushing Syndrome?
I have a 1.5 cm left side adrenal adenoma.
Unexplained right abdominal pain.
Fatty liver
Fat above the collar bone that seems to increase and decrease in size.
(Pictures of this)
Severe Fatigue
The worst migraines headaches ever; headaches are so bad it feels like I’m being hit by a hammer on one side of my head.
At least twice a month I get very nauseated and vomit
Red cheeks (Dr. Black observed this and thought it may be Lupus; that test was normal)
I cry more than I ever have.
Weight gain (mainly in my abdomen), I walk a mile every other night (even though it hurts so badly, like my bones will break) I have been eating healthier, but the weight gain keeps going up.
I have insect bites that take forever to heal
I bruise easily and have muscle pain
Many times it feels like my legs are going to break in half when I walk
Upper back ache constantly
My left arm and leg have this severe ache deep into my bone
Weak muscles in my shoulders
Used to have Periods that were irregular. (had an uterine ablation)
I wake up many times during the night very very thirsty
I have a b12 deficiency
I have had tremors for at least 10 years and have been taking primidone for a very long time.
My Alkaline phosphatase has been high on my last 3 cbc’s
I have a spot on my liver that I never got rechecked
My real search for a diagnosis began vigilantly just over 2 years ago. I was extremely hot,exhausted,weight gain (unexplained) and not sleeping well and sleeping all the time but extremely fatigued!!! My face became very round and my facial & body skin was a nightmare.
My husband kept saying that he thought it was systemic but I wasn’t sure. And, this sounds so sill but completely true, I was watching an episode of Doc Martin (UK series) where a woman was having trouble and he told her she had Cushings. Well, I had never heard of this disease so I looked it up on the internet and told my husband that’s what I have. Of course, he said that I was being silly.
I had very upset stomach most of the time to I had an endoscopy & colonoscopy where large cysts had developed. I also had burning and nagging pain in my upper thigh area thinking it was my Lymph nodes. Many more cysts were discovered on my ovaries and all the doctors cold focus on were the cysts and telling me that my blood pressure was too high and that I needed to lose weight.
I few months later I noticed small purple striations on my abdomen and just knew I had Cushings. So, I asked my doctor if he could run cortisol test on me and he said no problem. I had also told him at this time that I was using a steroid cream to control my eczema and he said that would not cause not effect me in such a way to cause such problems.
I had beeen to the emergency room, had 4 CT scans, atleast 7 ultrasounds, 2 MRI’s and so many blood tests that I had lost count.
Another doctor had recommended that I see an Oncologist so I saw 2 of them…..still no idea and 2 more visits to the emergency room.
I sent all my files and tests to the best Endocrinologist I could find and still had to wait 6 months for an initial appointment.
During the 6 months of waiting to see my Endocrinologist, my body had taken a severe turn for the worse. I could barely step up onto a curb and would spend 3 weeks straight in a bed.
I was extremely depressed and felt like I was dying!!!
April of 2014 my long awaited appointment to see THE BEST ENDOCRINOLOGIST in the state finally came!!!!! He took one look at me and said you have Cushings without a doubt!!!! he saw all the other files and tests that the other doctors had done and said they all did the same exact tests and have absolutley no idea what they are doing.
This is the best doctor I have ever been to see in my entire life, he spent over 1 hour with my during my first evaluation. (Please know,that he is not even covered by my insurance but I didn’t care……shelled out $510 and it saved my life.)
He would stop asking me questions until he got to the root of what was causing the Cushings. And it was the cream that I was using to control my eczema!!!!!!! Yes, please know that Cobetasol Proprionate will cause Cushings if used on a long term basis.
I had no warnings or instructions from my Dermatologist. He just said use this on your eczema.
Dr. Neil Breit saved my life!!!! He said that I was hands down, the worse case he had ever seen!!! And he said that I would have definitely been dead in 1 or 2years at best.
If you live in the Northeast, please seek out this doctor. He is the best and very passionate & loves his work. He truly cares and brings lots of smiles with his treatment!!!!j
Dr. Breit still spends 1 hour with me on every office there. And I still pay full price but do not mind, because he saved my life!!!
Also, right before my diagnosis, I discovered GERSON THERAPY. Regardless of whatever is wrong or just being healthy, juicing helps me immensely with energy and just feeling better as a whole!!!
Thank you for enduring my long story!!!!! Keep fighting for your diagnosis and don’t stop till you get one!!!
Thank you kindly for reading my story,
Rita in New Jersey
A journey through Hell… with a happy ending
by Melissa Fine
The most insidious aspect of Cushing’s Disease is, while it is attacking you physically, it is destroying your self-esteem, your peace of mind, your very spirit. That more doctors, psychologists, psychiatrists, drug, alcohol and weight-loss counselors (and the list goes on) don’t know how to recognize something that, in retrospect, seems so blatantly obvious is appalling—and not only tragic, it is, in my opinion, criminal. I often wonder how many Cushing’s victims we lose to suicide because they were not able to get a diagnosis before they lost the will to live… simply because no one thought to look for the definitive answer in their blood, urine or saliva. I am certain that Cushing’s isn’t nearly as rare as the doctors believe it is. What is rare is their ability to recognize it.
This is my story…
First, you need to know that I was always a pretty happy girl (though PMS- related mood swings have always plagued me). I come from a very close family, always had a lot of support, had a group of true friends I could count on, and was always very driven to accomplish my goals. I moved to Las Vegas from Southern California in 1994, right after graduating from UCLA, to move in with the guy who would become my 1st husband (Rat Bastard!). My goal in life was to be a writer, and within a month, I landed a job with a magazine publishing company and was getting paid to do what I love. You should also know I was always way too skinny. No matter what I ate (and I was a picky eater, but what I did like, I ate as much as I wanted of it), I was lucky to keep my weight above 100 pounds. I was happy if I could maintain 105 pounds, so I didn’t look so gaunt…
In 1995, I started noticing something wasn’t right with me. I had every reason to be thrilled with my life, but I was constantly blue. Down. Not tragically depressed—that would come later—but I just never seemed to feel happy. I also found myself complaining of body aches and fatigue all the time. And I kept noticing big, unexplained bruises on my arms, buttocks, and thighs.
In July 1995, I was covering the opening of a new casino/spa in Mesquite, NV. I came out of some exotic acupressure chakra-cleansing massage with one thought: I WANT BEEF! Now, the mere smell of steak would always nauseate me, but I was starving and steak was the only thing on my mind. I ate a 16 oz. New York Strip plus a ½-pound of crab for dinner. Woke up the next morning STARVING and ordered another steak to go with my eggs, hash browns, toast and pancakes, and devoured it all.
That’s when I knew something was really wrong.
Over the next five or so years, I went to many doctors with seemingly vague, unrelated symptoms. I was always famished, so by this time, I was 145 pounds. The depression was also heavier, but at the same time, I felt a constant sense of anticipatory anxiety, like something was about to happen. In less than 10 minutes, a psychiatrist labeled me with “bi-polar 2” and I was thrown on mega- doses of serious anti-depressants and anti-psychotics. I caught every cold, was always bone-tired, constantly in pain, and was finding it more and more difficult to focus on anything. I went on and off various anti-depressants, none of which seemed to work for any length of time. The consensus among the many medical minds was that I needed to diet and exercise.
2000 brought a lot of change—and not the good kind. I found yet another new “family” doctor. This guy, though, actually tried. He noticed, after running a blood panel and looking at my many bruises, that my red blood cells were “abnormal” looking and that my white blood count was up. Up enough that, just to be safe, he wanted me to see a specialist. He told me not to be worried that “oncology” was on the specialist’s wall… he was just really good with blood.
By late August, I was in the oncologist’s office. After looking at more lab results, he promptly scheduled me for a bone-marrow test—which, in his opinion, was just a formality. He told Rat Bastard and me that I definitely had leukemia. My soon-to-be ex-husband asked him flat out: “Is there any chance that this could be something other than leukemia.” The good doctor said, “No. She has leukemia. We just need to find out which kind.”
Bone marrow tests take six weeks to come back. Six days before (and about two weeks from my 30th birthday) the results that would tell me which kind of leukemia I definitely had came back, Rat Bastard decided he “didn’t feel the same way about me anymore” and walked out.
Imagine my surprise when the good oncologist didn’t find the “Philadelphia” chromosome he was expecting to see. Still, he stuck to his guns and was really, really sure I had leukemia. He then took a job at MD Anderson in Houston, TX, but insisted I see his other good oncologist every six weeks or so to keep looking and monitoring my white blood count and my screwy red blood cells. After many months passed and my condition worsened with no explanation, the second good oncologist told me, “You are a ticking time bomb.”
Not helpful.
So, my wonderful boss (who was also a good friend, and, as it turned out, was the guy I was supposed to marry!), paid to send my mom and me to MD Anderson to speak again with the first good oncologist, who was now heading up a leukemia department of his very own. Time for bone-marrow tap Number Two, because he was positive that pesky Philadelphia chromosome was there somewhere.
It wasn’t.
I was back to square one. Only now body parts were starting to break. I fractured my foot by stepping out of bed the wrong way. I tore my meniscus— an injury I was told is usually found in professional tennis players—by doing a single jumping jack in a futile attempt to exercise. A new specialist ran a bone density test that showed I had osteopenia, the precursor to osteoporosis. Another specialist discovered I had insignificant, benign tumors on my adrenal glands—something, he told me, I had in common with approximately 25% of the population. But those revelations were the least of my concerns. The depression turned into an all-consuming black hole. For the next three years, not one day went by that I didn’t sob uncontrollably. I couldn’t do my work, because I couldn’t concentrate long enough to edit a simple story. I couldn’t read a book or even sit through a half-hour sit-com. I no longer recognized myself in the mirror. Even worse, old friends and even my own cousin—people I hadn’t seen in a few years—didn’t recognize me either. They literally walked by me as though I were a stranger. My physical appearance was that dramatically different. I would wake up at 5 a.m., ravenous, and I would FORCE myself to wait until 6 a.m. before I would allow myself about a third of a box of Cheerios with non-fat milk. It was the only time of the entire day that I would actually feel “full.” It only lasted for about two hours, tops… but for that brief window, I found relief from constant hunger pains.
Alone, I no longer knew my own mind. I hid away in my craft room and started endless scrapbooking projects that I never finished. The pretty paper and nifty hole-punches somehow made me smile a little. Like many, I would imagine, I started to self-medicate. Prescribed painkillers.
Thankfully, mercifully, my family bonds were stronger than ever. My parents even moved to Las Vegas to be near me. And that guy, my boss, Glenn… though he met me in my 20s, when I weighed 100 pounds, married me in my 30s, knowing I was truly sick, not knowing what illness I had, and at my heaviest. I was 188 pounds on my wedding day, and he made me feel like a beautiful princess.
At some point around 2003, I had yet another new family doctor. Overall, his diagnostic skills were, at best, questionable. He knew just enough to send me to other specialists. But he was generous with his prescription pad, so I continued to see him. I do, however, owe this particular doctor a huge debt of gratitude. He was the first to mention the word “endocrinologist.” I didn’t know there was such a thing.
Many lab tests later, the endocrinologist told me I had too much of something called “cortisol.” She became annoyed when I asked her what that meant. She faxed her notes back to my family doctor. I noticed she had scrawled the word “Cushing’s” with a question mark after it. I told my doc I didn’t know what
Cushing’s was. His exact words were: “Well, I do know what it is, and you don’t have it.”
The endo disagreed, I guess. She had me scheduled to have my adrenal glands removed. Somehow, 10 days before my surgery, my many questions and stubborn attempts to understand why I was going under the knife really pissed her off. I received a certified letter informing me that, due to my “abusive and indignant attitude,” I was “fired.”
Meanwhile, my mom started Googling. She read the symptoms of Cushing’s Disease as though it were a page from my diary. It was a perfect fit. Except that, according to what she had learned, the lab results weren’t making sense. They were pointing to my pituitary gland, not my adrenals. I cancelled the date with the surgeon and headed back to the family doc’s office. He was quite pleased with himself, claiming he knew it was Cushing’s all along. (He still takes great pride in that epiphany. Why let the facts stand in the way of a good story, right?)
Family doc told me it was great news that my pituitary gland was the culprit: All I would need is a highly focused beam of radiation and some salt pills, and I’d be as good as new. He filled my prescription and sent me to another endocrinologist.
This guy was clever. He actually sent me for an MRI. Unfortunately, the MRI showed nothing. He was, however, in agreement with the previous, previous, previous doctor who told me the adrenal tumors were nothing to worry about. I trusted him, because he dropped the name of a renowned neurosurgeon at USC in Pasadena: Dr. Martin Weiss. I did some research. Dr. Weiss was the real deal—a graduate of Dartmouth and Cornell and a professor of neurological surgery. Finally… an honest-to-goodness expert.
Husband and I packed our bags and were off to Pasadena for a venous sampling. Who knew there was such a test? I found myself in the bizarre position of praying with all my might that I had a brain tumor.
Waiting, waiting, waiting…
Dr. Weiss confirmed that the MRIs did not show the tumor, but he did point to a microscopic something-or-other at the base of my pituitary gland that was tilted ever-so-slightly. He explained that he had, at best, a 50–50 chance of finding the tumor and removing it. He also told me that salt pills weren’t going to do the trick.
In December 2004, Dr. Weiss successfully removed the tumor from my pituitary gland.
This is the part of the story where I’d like to say I dramatically awoke with remarkable bravery and perfect hair to a room filled with calla lilies. Instead, my eyes opened to four or five post-op nurses, I was hooked via a tangle of cords to various machines, my mouth was so dry my tongue was stuck to my palate, and I was frantic to find a toilet. Bedpans just don’t work for me and my bladder was going to explode. After much arguing and cursing, the nurses decided unhooking me was safer than allowing my blood pressure to go any higher. They rolled over a porta-potty, I went forever, and no sooner did they re-hook me than I had to go again.
Learned a new term: diabetes insipidus.
The morning after being released from the hospital (prescription for diabetes insipidus filled and at arm’s length), I remember that, for the first time in nearly a decade, I couldn’t finish my breakfast. I was full.
I’d love to end it with that perfect tagline, but…
Back in Vegas, the brilliant endocrinologist put me on the whopping dose of 20 mgs of hydrocortisone a day. Anxious to “jump start” my adrenals, he quickly lowered the dose to 10 mgs.
After more than a year of seeing a cardiologist for my racing heart; a (mis) diagnosis of panic attacks because it felt like I had an SUV parked on my chest; repeated bouts of nausea and dizzy spells; low blood pressure; increased joint and muscle pain; more depression; and a complete neurological work-up for symptoms too similar to MS for comfort; my incredibly insightful endocrinologist told me to stop coming to his office, go home, and praise God because I was “cured.” In what can only be called a surreal segue, he then added that I should also praise God for my inability to get pregnant, because children are so selfish and self-centered that they only degrade your quality of life. Not surprisingly, he retired from medicine shortly thereafter.
One doctor’s name was repeatedly touted: Dr. William Ludlam. He sounded like the savior of all endocrine-challenged souls. I was astounded when he, personally, actually took my call. After listening patiently to my story, he informed me that I was not yet his patient, and therefore, he could not and would not offer me any medical advice or instruction over the telephone. He then told me a story of a hypothetical situation in which certain familiar-sounding symptoms would, to a trained hypothetical specialist, be immediately recognized as the brink of full-blown adrenal failure. I took the hypothetical hint, did some quick online research—and (following only my own hunch, rather than immediately seeing a local doctor as I should have done) took a significantly higher dose of Cortef. Within an hour, I felt human—a feeling I hadn’t known in more than 10 years.
Dr. Ludlam made room in his schedule and, the following week, off we went, at last down the road to recovery.
I celebrated my 40th birthday last month. As 2011 rapidly approaches, I can finally say that my adrenal glands are now functioning on their own. I have not had the need for Cortef in more than a year. I have battled the addiction to pain killers and am emerging as the victor. My size 4 jeans once again fit, and while I still fight depression, it is no longer my primary state of mind. Slowly, I’m regaining energy and enthusiasm. My thoughts are clear, my will is strong, my creativity is restored.
I live.
—–#—–
If you or a loved one is suffering with Cushing’s or Addison’s or you believe you might be, and you need to talk, please feel free to contact me with any questions or simply for an understanding ear. I can be reached at mfine@casinocenter.com (please put “Cushing’s” or “Addison’s” in the subject line) or follow me on Twitter @SinCityTweeter. My thanks and ever-lasting gratitude to MaryO, www.cushings-help.com , and all the fellow Cushies who helped me along the way.
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