Patient Stories: A Patient’s Story ………….A Spouses Perspective Patient Sean Warren/ Spouse Barbara Tuccitto Warren
The test of true love came to us in 1990, when my body began changing with weight gain, aching breasts, severe depression, the loss of libido, cognitive difficulties memory problems, vision problems, severe headaches all of which became increasing obviously and by 1993 I had a weight gain of over 100 lbs most of it in my mid-section. My employment became increasing challenging and by 1994 I was unable to work. I was diagnosed as Bi-polar depressive & medicated with Lithium and Prozac. The Lithium and Prozac did not work well together and I was switched to Depokate and Effexor.
As time went by my symptoms continued to worsen while the depression was showing little or no improvement along with excessively high cholesterol and triglyiserides levels, . In the Fall of 1994 my wife began to believe that the depression was linked to something else. She began to research my symptoms and decided perhaps I should visit an endocrinologist. As she interviewed doctors she found a doctor in Minnesota who seemed to like a challenge. So we made an appointment and during the first visit he diagnosed sleep apnea ( had sleep apnea surgery in the Spring of 1995). From all the other symptoms I showed and explained he ordered an MRI and blood test to measure the testosterone & prolactin. He stated, the MRI showed a small ditsell, which could be a tumor, but it was not really clear. The radiologist
was not sure either. My Prolactin level was slightly elevated but not enough to be sure I had a tumor. This doctor put me on two cholesterol medications, sent me to a dietitian and put me on a low dose of Parladel. There was little improvement.
In 1997 we visited a well know neurosurgeon here in Minnesota who has a strong history of successfully treating pituitary tumors. When he reviewed the MRI, he said that the tumor is uncertain, but that empty sella syndrome is what is causing me my global problems. I returned to the first doctor explaining what the neurosurgeon has told me and he said that he just could not accept that.
So, in frustration I turned to a holistic approach for treatment. On my first visit with very little history the Doctor did what is called muscle testing and she asked me if I had ever had a problem with my pituitary gland. For the next six months I worked with her and felt considerably better, however, by September I was moving backwards. She told me
that I would need conventional medical intervention, due to the hormonal imbalances that were causing emotional distress and physical pain. She recommended a doctor that combined both conventional and holistic methods. I saw him from September through January, until he called my attention to my testosterone level, which was in the 100’s, and my free
testosterone that was less than half of what it should be.
He recommended I see an Endocrinologist so; I made an appointment with another doctor who was specialized in pituitary diseases and tumors. He too looked at the MRI and said it looked normal. He too wanted to put me on diet, stating that my problems were mental and I needed to lose weight (by now I weighed 280 lbs and had lost 11/2” in height) My normal size is 5”11 and 175 lbs., a size which I had been since out of high school through 1994. When visiting with this doctor he said all my levels looked fine. Right! My Proclatin level was 73. At the time I did not know this was high. I did not return to this doctor.
In May of 2000, I went to the Mayo Clinic Endocrinology Department. I was really raging and stressed the day of my appointment. We live about two hours away and I should have not been driving. During my appointment the Senior Endocrinologist came in to tell me that he was considering putting me in a 72 hours old for a psychiatrist evaluation based on the information my wife gave the nursing staff. Instead of understanding the waves of emotions that come with a severe hormonal imbalance. He was sure there was nothing physically wrong with me and my MRI and blood tests would look completely normal and he agreed to run some blood tests and an MRI even though he already knew what they would show.
We discussed remaining at the Mayo for the tests but we were both dismayed and angry, so we left.
In July things became totally out of control. I could not stop crying actually weeping (which made it nearly impossible to work or travel, which is something I did at least once a month both domestic and international) my weight was at an all time high, the acne on my face was increasing, no short term memory, no stamina, emotional distress and total loss of
My wife and my son took me to see our family physician of 12 years; he said he would like me to go back to the Mayo Clinic, however, not to the same doctors. He ordered a new MRI so we could go back to the Mayo with current films. Once again, the MRI was read that no tumor was present. We decided to return to the Mayo as our family doctor suggested. So, my wife researched another Endocrinologist at the Mayo and there was one who claimed to specialize in pituitary tumors. We made an appointment to see him and he too responded that the MRI looks fine and he was sure there is nothing wrong. This time a blood test was taken.
Four days later, the test results came back and my Prolactin was at 38.3 and my testosterone was 166. My LH and FSH levels were low and my cholesterol panel was irregular as well. This doctor prescribed Andro Gel to be put on in the morning daily. No other medications were prescribed. By the fifth day, I nearly threw the dining room table into the living room. Scared my family and myself. Both my wife and son left the house scared out of their wits. They
discussed the situation and concluded they needed to speak with our pharmacist. They came to learn that because I have had so little testosterone for so long that applying the Andro Gel might be to much too soon and that is what made me react so violently. I stopped the Andro Gel immediately.
So, again, we researched to find an Endocrinologist in the Twin Cities and was fortunate to find my current doctor who I have been with for one year. He started out very slowly. In his first set of tests the testosterone was 153, low LH and FSH, and Prolactin was 66. He prescribed Dostinex for the tumor and was hopeful that the Prolactin level would
come down which it did right away, along with the hope that the testosterone level would increase. It did, but not for nearly 11 months (presently, it is around 550). At this time my free testosterone is low and according to my last blood test so is my thyroid. I have lost a few pounds and my cholesterol panel is looking much better. In general from one year ago, I am much improved, however, I know I have a long way to go.
My wife met Teresa Sullivan, Founder of PDES through the Internet. When things were really tough with me Teresa supported Barb, providing her information and education on my illness. If Barb had not connected with Teresa I believe I would not be where I am today. Teresa suggested we visit one of the Pituitary Clinics in the country. Barb contacted a doctor at the Virginia Medical Center in Charlottesville Virginia. After speaking to her many times, we decided to visit the clinic. A team of doctors, two Endrogcolognists and two Neurosurgeons, saw me. The Sr. Neurosurgeon explained that I had a small Prolactin pituitary tumor, which he showed me on the MRI (taken in Minnesota in May of 2000). He went on to explain that the many symptoms I have are from the tumor. Just the fact that the tumor was finally identified on the MRI was worth the trip. The conclusion was that I was being treated appropriately for my illness at this time. I felt very validated and relieved that I was not crazy as lead to believe over and over. As importantly, the staff and the doctors stressed that mental distress is a part of the hormonal imbalance caused by the tumor. In the paperwork a patient completes there is a section regarding the issues of depression, mood swings etc.
My story is long and is difficult to type I type it, but I am pleased that I am able to share my experiences with you and your family. My family played an integral part of my recovery. They were and are always there for me. My wife never gave up! She has a three ring binder 4 inches thick of research that she complied in the last two years. Our son is patient and loving and believe me, sometimes I really push the envelope. Without their love and support, it is doubtful that I would be here today to tell my story.
Over the many years of this situation, people ask me how I could remain with Sean. My response is that he is sick and as his wife it is my responsibility to love and support him. Sean and I have had this conversation more than once. He felt many times that Tony and I would better off without him and he should leave. Both Tony and I shared with Sean our love and support and the fact that we realize he is sick with something that looks one way but is truly a physical problem. In an effort to share with you how I cope with Sean’s illness and what you can do to help your spouse, friend or family member I compiled a list of things that helped my family and me:
- You need to empower the situation, the person with the illness cannot.
- Educate, educate, educate the saying Knowledge is Power is most certainly true.
- Remember you’re in charge. Make decisions with your head not your heart.
- When the person with the illness is having a tough day do not take it personally.
- Be kind, loyal and loving. The scripture Love is patient, Love is kind is one I clung too.
- Remember …do not doubt the illness. Hormone imbalances can look like mental illness.
- Find support for yourself. Prayer group, Internet, Family members etc.
- Prepare for the doctor appointments. Write down your questions (and answers).
- Communicate and educate other family members. Remember this affects them too.
- Watch for side affects good and bad from medication. The person with the illness sometimes is not aware of them.
- When the person with the illness begins to show improvement …give them back their life i.e. gong to doctor appointments, making a hair cut appointment or dental appointment, writing checks etc.
- And most importantly, Never give-up and remember, love is forever!
Sean and Barbara Warren have been married for 22 years; they have a son Tony who is a college sophomore. They reside in Fridley Minnesota a suburb of the Twin Cities.