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Non-secreting Pituitary 'Tumor', a Patient's Account
by Mary Lou Jepsen (mlj@microdisplay.com)

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Disclaimer: This account is my own and I make no promises as to every medical detail being accurate, the events are as just as I recalled them. Any opinion expressed is entirely my own. I can't promise that each surgery will go exactly like this one, but hope that it offers some insight from a personal perspective. Consult your physician for details.

{ Keywords: pituitary tumor, lyme disease, pituitary dysfunction,
hormonal imbalance, psychological effects of pituitary disease }
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I was just noticing tonight how my feet don't hurt anymore, and neither do my teeth. Both used to drive me to ibuprofen on at least a monthly basis for over five years. But these are rather mundane things, in comparison to the more profound effects of the 1.3 cm. diameter mass that was found to be crushing my anterior pituitary gland last August (1995).

Pathology Report

The surgery turned up no adenoma (or tumor); instead, the mass was composed of acellular debris. I had the operation done by Dr. Peter Black (Brigham & Women's Hospital, Boston) last September (1995). The pathology report stated:

    Abundant acellular necrotic debris, macrophages and granulation tissue were found. Special stains for bacteria, spirochetes, AFB, and fungi were all negative. Immunoperoxidase for keratin was positive only in normal pituitary cells. There was no hemosiderin, as one would expect in apoplexy, and no neutrophilic infiltrates to suggest an abcess. The necrosis and lack of Langerhan's type cells made the diagnosis of histiocytosis (Gagel's granuloma) unlikely. Similarly, there was no evidence to support an interpretation of lymphocytic hypophysitis. The presence of foamy macrophages and granulation tissue in some fragments was consistent with a xanthogranulamatous reactive process of uncertain etiology. A small slice of my anterior pituitary gland tested 'normal'.

Dr. Black, who runs the pituitary clinic at Brigham and Women's, had never seen anything like this before. He was pleased to find no tumor, but couldn't say that a mass wouldn't return because it's etiology was unknown. Yet, he was hopeful for complete return of my pituitary function, as a slice of the gland itself tested 'normal'. It's been 4 months since the surgery and there is no sign of any return in pituitary function. But my endocrinologist, Dr. Lucinda Barnard (East Providence, RI) suspects that this mass took many many years to build up and that it isn't unreasonable to suspect that my pituitary gland could take a few years to return to function. So I'm hopeful, but honestly, taking the prednisone, synthroid and birth control pills daily isn't that big of a deal. My life is much improved these days. And, now, from reading the Pituitary Tumor Network Association Resource Guide last week, I've discovered that I might be able to have children (when I'm at that point in my life) via injections of LH and FSH, even if my own pituitary function doesn't kick in. I was very pleased to get this information; I was initially told that I probably couldn't ever become pregnant, but that was pre-surgery.

Personality Effects?

I must say that ever since having this mass removed I feel more sane. Actually it happened once I started taking those fake hormones, even before the surgery. The pills are great. Who needs caffeine when you can pop some prednisone. But when I tell my friends that they suspect that I'm abusing. I'm not, I double my 5 mg a day to 10 mg when I am ill. I still catch the flu with that same ease I've always had, but I'm not going to complain about that.

The weird thing is that I miss being morose. I used to have higher highs and lower lows than I do now. My phone bill has gone way down. Overall I'd say that I'm less needy. I can just work all the time, sans social life, which is what I need to do as I'm in the dissertation year of my PhD work and I want very much to graduate. But by the same token, I've gotten better at dealing with people, maybe in general I'm just less emotional.

It's great to get the opportunity to see the world now through such different eyes. Few people get to do this with just a surgical procedure. But of course, there is the pre-diagnosis period which is difficult to go through. Here's a summary of that period for me.

The Unfolding Symptoms

Aplastic Anemia

I'm a 30-year-old caucasian female. At age 13 in 1978 I had a severe aplastic anemia, my hematocrit went below 10 and I spent several weeks in an intensive care unit. I had an enlarged spleen as well. Over the course of several months, via blood transfusions and steroids, I came back to full health, but the etiology was never understood. Recently I was tested for parvovirus B19 and my IgG was >10 indicating that parvovirus might have possibly caused the aplastic anemia episode of my youth rather than the pituitary problems I'm accounting here. It is currently thought that children afflicted with parvovirus B19 may develop rheumatoid arthritis in their late twenties. This was one possible diagnosis of my recent condition before the pituitary mass was discovered. Sero-negative Lupus was another possible diagnosis. But let me tell the details first.

Cytomegliovirus

In 1990 I was diagnosed with cytomegliovirus (CMV) of the kidneys. I spent about two months in bed and eventually regained my health. I became concerned, because my nephrologist explained to me that only those with AIDS or transplant patients generally contracted CMV nephritis; I had neither. At this point, I decided that I was just too sensitive. I caught things more easily than most people. I began, at age 25 to figure that I had to look after my health more closely. I had, since my late teens, caught the flu easily. And during the last 5 years I seemed to get the flu even more often. But I didn't think much of it, because I lived all over the world during this period: from California to Australia, then Germany and now, New England; I thought I was exposing myself to different viruses in these different places. On only one occasion during this time did I require antibiotics for a general bacterial infection. Also, during this time, It did start to take scrapes months to heal. I didn't think much of this, because I didn't get scraped up very often. It's only in the year and a half pre-diagnosis that I started falling down all the time and in general getting more un-coordinated and scraped-up.

Bell's Palsy

In March 1994 the left half of my face went numb (Bell's Palsy). I couldn't shut my left eye, feel the left half of my tonque, etc. I saw Dr. Constance Hiller (Brown University); she became my primary doctor at that time and saw me through the rest of this saga as such. At the time of the Bell's Palsy diagnosis I was found to be hypertensive (180/140ish) for the first time in my life. I was put on prednisone for a three week course as well as hypertensive medication; first hydrochlorothiazide and then, later, that was replaced with Inderol (10mg/day) (which I only stopped taking 2 months ago). I was tested for Lyme disease as it is endemic to the areas I frequent (Connecticut and Rhode Island): I tested negative. I had no headaches at this time, but after the Bell's Palsy was cured, a month later, I began to develop headaches often. For the next 8-9 months I began to complain more about headaches but ibuprofen would alleviate most of the discomfort in those wonderful 800 mg doses. I figured that I was fighting off various colds and flu, etc.

Then the vomiting began, and more significant fatigue. I could keep that somewhat under control if I stayed in bed, but I had to attend to some deadlines and generally keep my job. I pushed to make a deadline in December 1994 and got a severe headache that stayed for over 2 weeks. All I could do was lay in bed and periodically get up to vomit. I couldn't keep food down and lost 20 pounds during this period of time. I lost more weight during the following months. As the disease progressed I could keep food down again, sometimes, but the vomiting is something that I got used to. I began to understand how bulimics could get used to it, I was eating so little that at one point I realized that all I could eat each day was either one piece of fruit, or one small bowl of soup. I had no appetite and food was not appealing to me. I've always been a bit overweight, so I thought maybe this was my chance to get to a normal weight.

Sinus Infection?

My condition was diagnosed initially as a sinus infection and I was put on a 10 day course of amoxicillan. 6-7 days into the course I developed bad joint pain. It began in my neck and shoulders and spread throughout my body. Every joint ached. Routine blood pressure measurements would turn my entire arm black and blue. I could barely walk, and when I did it was exceedingly slow and very painful. I was sleeping about 20 hours a day at this point, and when I wasn't sleeping I was wishing I could be. I was exhausted. I couldn't think well. I couldn't even remember how to subtract, which is pathetic considering my field is applied physics. I couldn't think through the complexities of problems and I couldn't remember even the tasks that I hoped to complete in a given day. I began to rely on my lab book like never before and hoped that stupidity would disappear as I regained my energy.

Lyme Disease

It was thought that I probably had Lyme Disease (it made sense with the Bell's Palsy of 9 months previous) and I was put on a course of Tetracycline and given another Lyme test whose result was 'indeterminant'. On the tetracycline I began to feel better! The joint pain slowly went away and my energy level came up some. After a month on the tetracycline, nearly all the joint pain was gone, and my sedimentation rate which had been up to 60 was down to 12.

Only a few days off of the month long course of tetracycline, the joint pain, fatigue and vomiting got worse. These symptoms had never been completely eliminated, but had improved a great deal during the tetracycline course. My energy in particular was far from normal, but I could work sometimes 8 hour days now. Also at this point, I hadn't had a menstrual period for 3-4 months. Apparently this can also happen with Lyme Disease. I saw an endocrinologist because my TSH level was just a sliver low, and my prolactin level was a little high (it would vary between 30 and 60 over the course of these several months). The pituitary dysfunction still wasn't clear, apparently Lyme Disease can give strange readings. I was put back on the tetracycline for another month. I improved, and towards the end of the month even the pain in my fingers disappeared. We thought I was cured! But alas, just a few days off the tetracycline and my joint pain was back in my fingers and toes and my sedimentation rate was climbing back up, it had been down to 10-ish while I was on the tetracycline.

The next month was consumed with a go around with various infectious disease specialists, a rheumatologist, the endocrinologist and so on. The infectious disease specialist doubted that I had Lyme, and thought that maybe I had just a string of different colds and flu, saying it was a bad flu season. In addition she thought that the arthitis might be a result of a possible parvovirus B19 episode in my youth. The rheumatologist doubted the Lyme diagnosis as well, and thought that maybe I was just getting rheumatoid arthritis. But, I still tested, on the Western Blot Lyme Disease Test, as indeterminate. It was concluded that before further diagnosis could be continued this question of Lyme Disease needed to be put to rest. If I was still ill after a one month course of intravenous antibiotics (Ceftriaxone, 1 gram every twelve hours), then more tests would be done. After this course my Sed. rate was back down again to 10ish (it had gone up while I was off the antibiotics). My joint pain disappeared. My energy level was improved, far from normal, but it was thought that my body had been through some trauma and it would take a while to get fully back to normal.

At this point I decided to quit my part-time job and concentrate solely on my studies. My studies had been going nowhere for about a year because of my fatigue and forgetfulness; and if this was being cured, well, then I was getting old or something. If I was ever to graduate I would need to take out a loan and concentrate solely on my degree studies. So I told my boss and gave a few months notice.

Continued Amenorrhea

I hadn't menstruated in more than 6 months and I was given a gynecological exam, which was normal. I was put on a Provera challenge to see if I would menstruate. I didn't respond. A month later the endocrinologist suggested an MRI and the results showed the pituitary mass. It was a relief to have a diagnosis, and a hope that I wouldn't have to live the rest of my life with the fatigue that I had experienced over the year. The fatigue and the forgetfulness had completely altered my expectations of myself in my life, and now there was a chance that this could change.

My Surgery

Less than 3 weeks after the positive MRI, my mass was removed via transphenoidal procedure: they went through my nose, under general anaesthesia. The pituitary mass required immediate attention because it was threatening my optic nerve and thus my ability to see. I didn't know this prior to surgery, but no scars are left that are visible to anyone who looks at you, unless they look up your nose with a medical device. I was in the hospital for 5 days. It was very uncomfortable to have my nose packed. Breathing through my mouth alone made my mouth really dry. I was so uncomfortably thirsty. I spent a week out of the hospital recovering at home, but after that I felt great and went back to working on my degree, now full of vim and vigor.

Ear Fungus

A few weeks after surgery my ear started hurting a lot. It had also really pained me just prior to surgery, some drops that had been prescribed at that time had helped. Of course no one ever looked into my ear, even with all the doctors that I had seen during this time. I finally decided that one must search out a specialist and made an appointment with an ear nose and throat (ENT) doctor. It turned out that during this time a few holes had been eaten through my ear drum by a fungus (the usually innocuous aspergillus niger). Luckily, more drops and a course of Diflucan cleared up that danger, and the holes in my eardrum have now healed up nicely. My ENT says I got lucky here; I figure that you have to get lucky sometimes.

In Retrospect

The doctors believe that I had the Lyme disease, that ear fungus, the cytomegliovirus of the kidney, all the 'colds', etc. because my immune system was effected by my lack of cortisol (my AM cortisol reading was below 1.0 just after the MRI came back positive, and has been even lower in subsequent months). So, my condition was difficult to diagnose because I also had Lyme Disease, which itself can mimic many diseases and conditions.

The weird thing is that I got used to being sick, to saying 'no' to everything and just going home to sleep instead of having a so-called 'real' life. Now I say 'no' to everything and sit in front of a computer and work on my dissertation. In some ways it was good training, and now I can transition back into normalcy. Or maybe something else better...
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Non-secreting Pituitary 'Tumor', a Patient's Account

by Mary Lou Jepsen (mlj@microdisplay.com)

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[Neuroendocrine Clinical Home]Neuroendocrine & Pituitary Center | Referrals
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Disclaimer About Medical Information: The information and reference materials contained herein is intended solely for the information of the reader. It should not be used for treatment purposes, but rather for discussion with the patient's own physician. All visitors to this and associated sites from the Neurosurgical Service at MGH agree to read and abide by the the complete terms of legal agreement found at the Neurosurgery "disclaimer & legal agreement." See also: the MGH Disclaimer, the MGH Privacy Policy, and the MGH Interactive Program Disclaimer - Visitors must read the disclaimer - legal agreement. All Rights Reserved. Copyright 2007 MGH Neuroendocrin Clinical Center - e-mail C.Owen
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