[personally identifying information omitted]
I have not felt "well" since I was 17 years old. I have journals from that time that describe a very abrupt and dramatic shift in my mood. It was as if someone had turned the lights off and I found myself frightened for no reason and close to tears almost all of the time. This feeling has persisted without remission to the current day.
After a year of feeling like this I became histrionic in the attempt to get relief. I demanded psychiatric assistance and threatened to harm myself. I don't think, however, that I was then or have ever truly been suicidal. It was a way for me to make my parents realize how seriously my mood was affecting my life.
I was admitted to a psychiatric facility and evaluated over the course of a week. I was diagnosed with bipolar disorder and given large doses of lithium. This treatment did not help my mood and made me feel much sicker. I decided that I could not be helped by psychiatric measures and rejected all such interventions for the next four years, while I went to college and obtained an undergraduate degree in Psychology. When I revisited my journals from this time several years ago, I discovered that I had recorded the results of the blood panels they had run on me at the mental hospital: normal, except for a high calcium level (which, unfortunately, no one seemed to have grasped the signficance of, including myself).
When I was in my mid-20's I suffered from an episode of kidney stones. It happened suddenly, in the middle of a long hot summer. It was the most painful thing I've ever experienced, although it only lasted through the night. I went to the emergency room and they gave me pain killing medication. I followed up for months with a urologist but I remember him being puzzled that he could never pinpoint the cause.
I eventually did go back to see psychiatrists in my late 20's, because of the mood problems described above. I was on various SSRI's such as Prozac and Celexa for many years on an out-patient basis. I have always managed to live a fairly successful, "normal" life despite what I consider to be an emotional handicap. In 2000 I moved to Seattle with my husband and continued to medicate myself with psychiatric drugs and large quantities of marijuana, which seemed to bring some relief from the pain by inducing a mild euphora and adding an element of confusion to my thinking, making it easier for me to distract myself with my work and artistic pursuits.
In late 2002, I noticed a shift in my mental symptoms. The anxiety component became more prominent and I began to feel uncomfortable with a certain quality of agitation to my thinking. I also felt more unwell physically: I had persistent muscle aches, a "weird" feeling of malaise that would wax and wane with the days of my menstrual cycle, and (what I felt) to be inappropriate levels of thirst. I communicated this to my psychiatrist and he said that my best option was to begin treating myself with benzodiazepenes, such as Valium. I feared the addictive aspects of this course of action and decided to go cold turkey with everything, and to consult with medical doctors, to see if I could get to the bottom of things.
I began a relationship with Dr. Christopher Pepin at this time, who remains my primary care physician. It was under his care that blood tests were performed and the hypercalcemia (and probable hyperparathyroidism) was finally uncovered and diagnosed. This was in 2002. I then saw an endocrinologist several times and she advised me to undergo surgery. I found what I believed to be the most qualified surgeon in the area, Dr.David Byrd at the University of Washington Medical Center. He performed an unsuccessful "big" surgery in January of 2003. I was on the table for six hours but pathology reports indicated that no parathyroid tissue, either healthy or unhealthy, was extracted from my neck.
Intraoperative PTH levels showed a dramatic decrease in the reading from the right side of my neck, enough of a positive sign for Dr.Byrd to end the surgery, and enough to make me believe for several years that the problem had been addressed. I believed that a successful intervention has been possible due to the devascularization of the diseased tissues. I felt the same way I did before the surgery, except weaker and with a great deal of trauma to my throat and neck, but I tried to put it all behind me and act like I was cured.
Two years later, in 2005, it seemed to me that the "weirdness" just kept getting worse. I checked back in to have more tests performed. They indicated a mild but persistent elevation of my calcium levels, just slightly above the normal range. I did not see the actual numbers and the doctors led me to believe that I was doing well and there was nothing to worry about.
A year later and my alarm and distress over continuing symptoms and a sense of being unwell led me to check in with the doctors again and to be more aggressive about educating myself about their findings. Results indicated mildly abnormal calcium levels. I sought out the help of Dr. Kathleen Stickney, a local specialist in parathyroid disease. She examined me carefully but declined to intervene, due to the complexities of a re-operative case and the less than conclusive evidence of continuing blood tests, which sometimes returned showing my calcium and PTH within normal ranges. She referred me to Dr. Maureen Marshall, an endocrinologist, who did more extensive testing. Again, she found my calcium and PTH in the normal range. But she also found that my urine calcium levels were abnormal and that my Vitamin D levels were so diminished as to be undetectable.
Medical imaging and localized intra-operative PTH testing has repeatedly indicated a small adenoma on the right side of my neck. I received a most thorough and skilled ultrasound in Spring of this year from a Dr.Barry Mahoney. His findings seem to me to be critical. Sestamibi scans have mostly been useless, although they also showed a slight washout on the right side previous to my first surgery.
I know that things could be much worse and I would rather feel the way I do than to lose my voice or become hypocalcemic. At the same time, I also feel like I have the responsibility to seek Dr.Norman's opinion of my case, because I view him as the ultimate authority on parathyroid disease. I am also concerned by what I have read about the long-term effects of this disease, especially on the functioning of the heart. I underwent a 24-hour heart monitoring session before my first operation, because the anxiety led me to complain of tachycardia. Those results were suspicious for left ventricle enlargement, which I understand now to be in some way related to persistent hypercalcemia.
Thank you for listening to my story. No matter what the decision, I deeply appreciate your clinic's work on behalf of people suffering from hyperparathyroidism. ![]()