Patricia’s Story

My name is Patricia Primosig.  I was born on November 25, 1964 in Toronto and have lived there all my life.   I am not quite sure when my illness began but I believe this is my best guess.

I had my first child, Meghan, on July 4, 1996.   She was born early as I had high blood pressure.  After she was born and after 6 months of breastfeeding my period did not return.   I went to my doctor because I thought this was abnormal since I was only 32 years old.  He managed to get my period going but it was very irregular so I went on the pill.  During this time I kept gaining weight at a very gradual  rate even though I was running daily and dieting.  When I went off the pill, my periods were very irregular again so I went on Clomid to get pregnant with my second child.  During my pregnancy I felt better.  I am guessing that is because you are not going through your regular cycles normally produced by your pituitary. My second child was born early because of high blood pressure.  Matthew was born on December 13, 1999  and I breast fed him till the spring of 2000.   Of course, my period did not return and I started to get other symptoms, such as mood swings, depression , headaches, high blood pressure (on 2 meds to control that) gradual weight gain while being on a diet and running every day.  

I went to see my family doctor, Dr. Erlick, (by the way he is the best doctor you will ever find) who could not figure out why I was not getting my period and having high blood pressure.   He conducted many tests including, ultra sounds of my pelvis (ovaries & uterus), heart, and kidneys trying to find something that was cause both of these symptoms.   He felt my other symptoms (anxiety/depression/mood swings) were a side effect because I was thinking something was seriously wrong with me.  He gave me Ativan for anxiety to help control these fears.

He then decided that it might have something to do with my pituitary; maybe a tumor  but did not think so because most tumors are Prolactinomas and my Prolactin was normal.   He ordered an MRI and referred me to an endo by the name of Dr. Boutros whom I starting seeing in April, of 2002.   When I went to see him the MRI showed a slight swelling on the right side of the Pituitary but it was just micro in size.  He did not feel it was the cause of my symptoms.   He began doing various tests of all my hormones and discovered that my thyroid was low.  He put me on synthroid which I am still on today.   Dr. Boutros very puzzled because none of these on their own should cause the symptoms I had, which were getting worse and worse.   I had less and less energy, stopped running, continued to gain weight, and had terrible anxiety and depression.   He still to this day does not believe that anxiety and depression are  medically related to the tumor.

After six months of not finding anything but still believing the cause was from the pituitary he order a follow up MRI.   In December, 2002 I was told I had a 10 x 8mm tumor on my pituitary gland.   He believed it was a non-functioning  tumor because most of my levels were normal.   Because the tumor was obviously growing he said that it should be removed as soon as possible.

I was referred to a neurosurgeon named Dr. Gentili who works at the Pituitary Clinic at Toronto-Western Hospital.    I met Dr. Gentili in February, 2003 and he confirmed Dr. Boutros’s diagnosis and recommended I have the tumor removed because it was very close to my Optic Nerve (2mm away).  He is very well known and extremely good and very busy so he said it wouldn’t be until April that he could perform the surgery.

Then SARS hit Toronto and everything was put on hold.   He finally scheduled my surgery for June 19, 2003.  By the way I continued having symptoms which were getting gradually worse.   A week before surgery his office called and notified me that he had been in an accident and broke his arm.   Surgery would be delayed again.  Still holding on I waited patiently.   I was rescheduled for surgery on August 14, 2003.

The surgery was performed although that was the day of the “Black Out” and he was actually in the dark for about 15 seconds during surgery.   After the surgery everything went wrong.  There was no power and the nurses could not get to the hospital.  It was very confusing and everyday I felt worse and worse; not better.

I left the hospital three days later hoping that I would eventually start feeling better.  I didn’t begin to feel better so I called my endo and asked if I could come in and see him.   He asked if they did follow up blood work after the surgery.  I did not know because they never told me what they were taking blood for.   He had me do follow up blood work and discovered that I was not producing ACTH or Cortisol.  My levels were almost nil.  He immediately advised me to start taking Hydrocortisone.  I started taking 30 mg a day.   He advised me that the cause was either one of two things; (i) my pituitary gland went into shock because of  the surgery or (ii) they misdiagnosed my tumor and that it was an ACTH secreting Tumor (Cushings).

When the pathologist’s (Dr. Asa,  world renowned) report came back it was a cyclic ACTH Secreting Tumor.   Dr. Gentili recommended that I start seeing Dr. Rideout, the endo out of the Pituitary Clinic  so they could both monitor my recovery.   Dr.Rideout said that it would have been very hard for my endo to diagnosis this as a secreting tumor because my tumor was cyclic which means it was releasing Cortisol irregularly in large amounts.   I can believe this as my cortisol was only tested in the morning and I found my symptoms (especially the anxiety) occurred mostly in the evening.

I am now six months post op.  My pituitary started to work again from being weaned off the Hydrocortisone.  I am now only taking 10 mg.   I am schedule for my six month follow up MRI but because I am on the way to being cured I am not worried about it.   As for my symptoms, I am still pretty fatigued and achy (especially when I lower the dose of Hydrocortisone).  I rarely have anxiety anymore and no longer have depression.  I am on Celexa (anti-depressant) and I am not dieting or exercising because I am tired all the time but the best thing is I’m  losing weight.   I don’t seem to eat as much.  I get fuller faster.  I was 158 pounds before  surgery and now am 130 pounds and starting to really feel good.

Patricia Primosig.