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Mary's Story...

I was initially diagnosed with pseudo-Cushing's in 1995. Symptoms got worse, and in 1997 I tricked an endocrinologist into finding a pituitary tumor. I had transsphenoidal resection of the tumor in September, 1997, and it tested grossly positive for ACTH.

I have been followed my UVA endocrinologists who CLAIM that I do/did not have Cushing's, that my tumor, although positive for ACTH was a SILENT ACTH tumor. I'm still not sure I totally accept that, since I have had all the signs and symptoms of Cushing's except for three.....I haven't developed diabetes, I haven't had any stress fractures due to osteoporosis, and I haven't become psychotic.

I am a registered nurse, so some of my explanations and descriptions may be more clinically phrased than it would if I were a lay person. But I will try to explain any terminology I think would not be commonly understood by the general population.

My story began essentially in 1992. I had always been obese, but a fairly shapely obese. My weight was stable, and had been for about ten years. My menstrual cycles had been erratic since age 19 (I was diagnosed with polycystic ovaries in 1982); but my menstual periods had become regular in 1984, and I finally conceived and gave birth to a healthy daughter in 1986. My periods resumed normally after delivery.

In December 1992, my menses suddenly ceased altogether. In the following months, I began to notice mild pitting edema (fluid accumulation in which you can leave an impression with your fingers) in my feet and ankles. At first, elevation of my legs and the use of good support stockings controlled this problem. But eventually, even these measures didn't help. My feet and legs became so swollen that finding a shoe to fit, and being able to get my foot close enough to put it on was very difficult. The weight was piling on, mostly in my abdomen; it was not long before I had no waist anymore. My face became puffy and a huge double chin hung below my swollen face. (A co-worker once said I looked like Buddha. My daughter even was ashamed of me because of the massive obesity, and my husband physically rejected me because of it too.)

Because of the severe swelling in my feet and ankles, and the progressive muscle weakness, walking or standing became absolutely miserable for me. I would look for places to lean or sit on, just to be temporarily relieved of the excruciating pain in my feet, legs and back. I moved a chair into the kitchen just so I could sit every few minutes while cooking. I avoided going places and doing things because most physical activity was so painful. Taking a shower was a major ordeal....I was so worn out afterwards that I would have to sit or lie down to recover, not to mention that reaching certain body parts was almost impossible due to the obesity. My most embarrassing moment occurred in a department store when I discovered I could not rise from a stooped position, and had to crawl over to a counter to pull myself back to my feet using my arms since my legs were too weak to lift me.

I know my family got very tired of my saying I didn't feel good every day that came. (My husband contended that if I'd simply not eat so much, I would lose weight, and consequently feel better.) I continued to work, but it was only by sheer determination and necessity that I continued to do so. Getting behind the steering wheel of the car became difficult because of the abdominal size increase. I looked for clothing that would hide my spreading, pendulous abdomen - "tents", as my husband referred to them. There were many times I wished for death just to be out of my misery, since I didn't see an end to it in the near future.

I began to have chronic skin eruptions - you might call them "boils". The clinical name for them is hidradenitis suppurativa. Painfully swollen lumps developed under my arms, between my thighs, on the back of my neck, and around my waist. Some of these lesions required incision and drainage; some opened and drained spontaneously. I never knew when this might happen; so on a number of occasions I ended up with soiled clothing from the putrid, foul drainage. Continuous antibiotic therapy failed to arrest or control this condition.

Finally, in March of 1995, upon the discovery of markedly elevated blood pressure, I sought medical attention. Until this point, I believed that what I'd been told.....that my problems were all due to a lack of control over eating habits. Still, I thought that the hypertension was just a result of my massive obesity. At this first doctor's visit, I found that I'd gained 75 pounds over the weight I was at in 1992. I was placed on Norvasc (an anti-hypertensive medication), and Lasix (a diuretic) to get my blood pressure and the swelling under control.

But over the next few weeks, in spite of doubling the diuretic dosage, I gained another 15 pounds.....ALL in fluid. It was then that I read that Norvasc can CAUSE edema, and does so in women five times more frequently than in men. So, I consulted with another physican (an internist), presenting him with a two-page list of all the maladies I'd had over the previous several years. He took one look at the list, then at me, and said, "I think you have Cushing's disease." I told him I thought so too. (After I'd typed the list, I thought I'd seen this list of symptoms before; so I checked my nursing textbook, and found almost a mirror image of me under the heading, "Cushing's Disease".)

He changed the BP medicine to one which does not cause edema, and drew AM and PM cortisol levels, which came back at twice the normal range. I had a low-dose dexamethasone (a steroid) suppression test, which HE said did not suppress the cortisol levels. In July of 1995, he referred me to an endocrinologist for further evaluation.

The endo did more testing - 24-hour urine for cortisol, and a high dose dexamethasone suppression test. According to HER, the original low-dose test DID suppress, as did the high-dose test. So her diagnosis was something called "pseudo-Cushing's" - a condition exhibiting high cortisol levels WITHOUT the detrimental sides effects it causes. (According to my research, there are only three causes for this condition - mental depression, alcoholism, and malnutrition.) Her feeling was that I was depressed over being too fat; her solution was, "LOSE WEIGHT". I was placed on Luvox (an anti-depressant similar to Prozac and Paxil) that is useful for people with obsessive/compulsive disorders. It also has a side effect of causing anorexia (not anorexia nervosa, but just a disinterest in food). She never offered me any suggestions about HOW I was supposed to lose weight. My weight at this time was 348 pounds. So I started a diet of my own devising - 800-1000 calories/day, and limited fat intake to 20 grams/day. I kept a very detailed diet diary, keeping track of EVERY morsel of food that crossed my lips. She also added Aldactone (a potassium-sparing diuretic that has mild anti-steroid effects), and changed the BP medicine BACK to the Norvasc, even after I told her how much edema it had caused.

By September of 1995, I had lost about 50 pounds, but the edema was still a problem. So I decided, that since my BP seemed to be under control, I would try stopping the medication, and see if it remained within a normal range, and if the edema would then subside. I measured my ankles the day I stopped the Norvasc - they were almost 14" in circumference. After just ONE week off medication, by BP was lower than WITH the drug, I'd dropped fifteen pounds, and my ankles were down to 11.5" in size. Two weeks later, I saw the internist again, and told him of my decision to stop the Norvasc. My BP was under control without it, so he didn't feel the need to prescribe any other antihypertensive drugs. By November 1995, I'd lost a total of 98 pounds, most of which (contrary to what the endo doc thought), was in edema.

Things improved somewhat for about a year.....then the edema began to return, the weight gain started and I began to fatigue quickly again. From January through July of 1997, I returned to the internist a number of times with complaints of increasing edema, weight gain, and fatigue; and he added HCTZ (another diuretic) to try to lessen the edema. It didn't help. I was tried on Redux (a weight-loss drug), then on Ionamin and Pondamin (FEN/PHEN) to try to get my weight back down. But neither of these drug trials were successful. So I requested re-referral to the endocrinologist for further testing. I was never convinced that her original diagnosis was correct anyway.

She examined me again. THIS time, even BEFORE any additional testing was done, she decided that what I had was Polycystic Ovarian Syndrome (a condition which CAN unfortunately have many of the same presenting signs and symptoms as Cushing's disease). But I requested that she do FSH and LH ratios to determine if I'd gone through menopause, or if my amenorrhea had resulted from the Polycystic Ovarian Syndrome. She agreed, and drew FSH, LH and prolactin levels. A few days later, I received a call from her office stating that the levels were abnormal, and that she wanted me to have an MRI scan. (In fact, the FSH and LH levels were so low that they were almost undetectible.....the prolactin was slightly elevated.)

My MRI showed a 1.4cm pituitary macroadenoma. It was initially assumed that this was a clinically non-functioning tumor, meaning that it didn't produce any hormones of its own, and that the hormonal abnormalities were due to compression of the pituitary gland by the size of the tumor. ACTH-producing pituitary tumors are usually a mere few millimeters in size and hard to visualize on MRIs, so the physicians had no idea that this would be a ACTH-positive tumor.

In September 1997, I underwent a transphenoidal (through the nose and under the upper lip) resection of this tumor. The pathology report revealed it to be markedly positive for ACTH. When the neurosurgeon shared this information with me, I stood up in his office and shouted, "YES!!!!! I KNEW IT!" He contacted the endocrinologist and gave her the results.....she was flabbergasted. Post-operative ACTH level was elevated (there had never been a pre-operative level drawn to my knowledge). A post-op MRI showed probable residual tumor in the left cavernous sinus.

In the few weeks after surgery, I developed severely dry skin (I'd had very oily skin for 34 years), and the redness of my face all but disappeared. But I suffered more joint pain, muscle weakness and soreness, and fatigue than before surgery. Although post-op cortisol levels were normal, the neurosurgeon seemed to feel I had a "relative" cortisol deficiency (meaning that because my body had been accustomed to high levels for so long, that the body interpreted the normalization as a deficiency, thus the same side effects as low cortisol). So I was placed on hydrocortisone daily. Within a few days, the joint and muscle pain, and the severe fatigue was greatly reduced. However, after a couple of weeks on this medication, I saw the return of the oiliness and redness in my face. I slowly weaned myself from the medication, without the return of the post-op symptoms.

In early 1998, I went the University of Virginia at Charlottesville for evaluation by their pituitary team. A detailed history was taken, a physical exam performed, and the MRI films reviewed. The physicians there seem to think that perhaps my tumor, although markedly positive for ACTH, did not actually secrete the hormone. They feel that I had two separate conditions going on simultaneously, which can have many overlapping signs and symptoms. They say that most of my problems are due to polycystic ovarian syndrome, and not from Cushing's Disease. Numerous labs tests were performed.

So.....the small area on the post-op MRI that appears to be residual tumor is apparently not doing anything detrimental, so a repeat MRI and lab tests will be done in 6 months to see if there is any changes.

At present, I am being treated for the polycystic ovarian syndrome with Metformin (trade name Glucophage - a drug to treat hyperinsulinemia and insulin resistance - a side effect of PCOS). It should make my menses return.....but not until my FSH and LH levels are back to normal.(Just a note: 2003 - The Metformin did not result in a return of my menstrual periods; I've had only about 8 since the surgery. So I am no longer on Metformin.)

November 1999 Update

I had a repeat MRI done this month. It showed definite residual tumor in both cavernous sinuses, displacement of the pituitary infindibulum and a 2mm increase in size from the last study done in February 1999. I will be seen again in about six months for further evaluation, and possibly to schedule gamma knife radiation treatment.

October 2001 Update

I had an MRI done because I developed a severe headache with nausea and vomiting while in the hospital being treated for blood clots in the lungs. It showed the residual tumor in both caverous sinuses and extending into the sella tursica. The next day I developed 3rd cranial nerve palsy with an inability to move my left eye within the socket and an inability to focus with that eye. The doctors never determined what caused this, but I suspect that pituitary apoplexy was the cause.

December 2003 Update

I've had a change in the nature of headaches and an increased frequency of headaches. Another MRI was done. The radiologist didn't even mention the residual tumor, but said that the overall size of the pituitary gland had decreased since 2001, and that there were multiple areas of "white matter disease" possibly indicating demyelination. So now I have to worry about something else - does this white matter disease indicate something else wrong with me, such as Multiple Sclerosis or early Alzheimer's?

May 2004 Update

I just completed a battery of hormone tests that revealed a VERY elevated ACTH level, almost 3 times the upper limits of normal. Does this mean that my supposedly "silent" tumor really ISN'T silent, or could it have converted to an active tumor? I don't know.....hopefully will get some answers soon.

Will I ever be "cured"? I don't know. I don't care what the final diagnosis turns out to be. My main goal is to return to a relatively normal capacity to function in everyday life.....TO FEEL BETTER.

If I've helped anyone in anyway with this webpage, I am glad, for that was my intention. It helps knowing that there are others suffering with this rare condition, and to have the information necessary for getting the help you need for a conclusive diagnosis and appropriate treatment.

I have detailed my story with current updates on if you would like to read it. Here is the address: http://www.geocities.com/my1obsession_1955/personalhistory.html

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