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Patient Takes Action on Difficult Diagnosis

I want to share my story with you because my recent medical journey began with listening to your radio show. Last April I heard your episode regarding advancements in the treatment of thyroid conditions. I was very interested in this topic because I have taken Synthroid for twenty years for hypothyroidism. My concern was that I felt no different after I started taking Synthroid than before and didn’t feel this was normal even though tests continued to show that the medication was keeping my Thyroid Stimulating Hormone (TSH) levels in the normal range.
My primary care physicians (PCP) would annually run blood tests and tweak the dosage, but nothing changed. When I heard about the advancements made over the last ten to fifteen years in diagnosing and treating thyroid disorders, I asked my PCP to refer me to an endocrinologist as I had not seen one in the twenty years I had been on the medication.
I told my PCP about your show (which she also enjoys) and she agreed to refer me to an endocrinologist. I saw Dr. Jennifer Beller, who at that time was a fellow at the Endocrinology Clinic at the University of Virginia Health System in Charlottesville. Dr. Beller really listened to me as I shared with her my questions and concerns about my hypothyroidism. She asked me some of the same questions several different times during the course of my visit, which was a little puzzling to me. She ordered the typical blood work but said she would run additional tests and would get me the results as soon as possible.
She called the next day and said my TSH levels were normal but that I had elevated levels of growth hormone which could be the result of an extremely rare condition called Acromegaly. You probably know that this is a disorder which results in the excess production of growth hormone. If left untreated in middle-aged people, the effects can be quite serious, including disfigurement, enlarged heart, hypertension, and heart and kidney failure. The initial health issues are often attributed to normal aging by physicians.
Dr. Beller said that since the initial blood test could produce a false positive, she ordered a 3-hour glucose tolerance test which she said would be more definitive. The glucose test confirmed that my growth hormone levels were high and that I likely had Acromegaly. Next I underwent an MRI to locate the tumor and its size. Fortunately, the tumor was relatively small and even though it was determined that I had likely had this condition for 5-8 years, because of its slow progression, they felt it was caught in the early stages.
It was my good fortune that UVA is on the cutting edge of researching and treating this condition. I was also extremely fortunate that Dr. Beller, who first saw me, had mentored under Dr. Mary Vance, who has worked in this field for over thirty years and is currently treating the tallest man in the world. When Dr. Vance walked through the office door and saw me for the very first time, she asked me how long I had had Acromegaly. Her eye is that practiced in recognizing it.
My good fortune extended to my surgical team, headed by Dr. John Jane, Jr., who is among the most proficient and experienced surgeons in the country. Dr. Jane and his team performed endonasal transphenoidal surgery on me on August 30, 2012, and by entering through the nasal cavity were able to remove the benign tumor without any outward surgical incisions. You could not tell I had had the surgery when I left the hospital two days later.
It has now been a little over six months since the operation. All my growth hormone levels have returned to the normal range. I am considered “cured” and no further treatments are necessary at this time. However, my growth hormone levels will be tested annually in the future.
As I noted at the outset, my medical journey began with your radio show. That episode might have concerned thyroid issues and not the pituitary gland, but it caused me to ask questions and seek answers when I otherwise would not have done so. Talk about a domino effect!
My husband and I enjoy your show tremendously and have learned so much over the years. It has helped me be a better medical advocate for myself. Thank you for letting me share my story with you.


Thank you so much for sharing your story. We are pleased that our program on thyroid led you to experts who correctly diagnosed your condition at an early stage. You are a role model for others who can learn from your experience to advocate for themselves. When something doesn’t seem right, ask questions, seek a second opinion and find the best treatment for your situation. You did all three. We are pleased you are doing so well.
Anyone who would like to learn more about the various tests for thyroid function and how to interpret the lab results may find our Guide to Thyroid Hormones worth downloading.
If you would like to become a regular listener to The People’s Pharmacy radio show, sign up for our *FREE* weekly podcast. While you are at it, email a friend and let her know that she too can access our syndicated radio show easily by subscribing to this free weekly program.

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About the Author
Joe Graedon is a pharmacologist who has dedicated his career to making drug information understandable to consumers. His best-selling book, The People’s Pharmacy, was published in 1976 and led to a syndicated newspaper column, syndicated public radio show and web site. In 2006, Long Island University awarded him an honorary doctorate as “one of the country's leading drug experts for the consumer.”.
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