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
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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