Jennifer S. - My Story, a Patient Perspective
It was initially discovered that I had a pituitary tumor in 1992 after a year of strange periods, emotional strife and infections . They did an MRI after my prolactin levels were slightly elevated, I was lactating out of both breasts. Despite the full lactation, they decided that the lab levels indicated nothing much at all, and so my lesion was declared an incidentaloma. From 1992 until 2000, I had to beg for MRIs or testing as I was told that any problem I had, if any, was thyroid, PCOS, endometriosis or that I had no issue at all - but it was certainly not pituitary.
I went from endocrinologist to endocrinologist. I waited months to see the doctors noted in magazines only to be told that I had no problem at all. I saw all sorts of specialists as I kept getting sick. I saw infectious disease specialists, dermatologist, oncologists, hematologists. My docs were so mystified they kept giving me HIV testing (all negative) and even sent me to a specialist who could not figure it out either. I was not typical in any way - I did not have diabetes, high glucose or high cholesterol or even high blood pressure. But I gained weight fast, had a bleeding disorder, would not heal, got sick very easily, had acne, had striae (who thought stretch marks were symtptoms!), and a red sweaty face. I was called a liar many times about my diet, exercise and life.
At one point, like many of us pituitary patients, I gave up and stopped seeing doctors. I got worse. The next doctor I saw was a turning point. I gave my list of symptoms and he was the first to say the word "Cushing's". However, he gave up after one urine test but just saying the word was enough that I could do research and realize Cushing's, sadly, fit me perfectly.
At that point I did all I could to educate myself on Cushing's syndrome and testing. I would test barely high at times and then normal. I knew I had the cyclical or episodic form and that most doctors do not acknowledge or treat that form. Finally in 2004, I found a doctor that would treat me and I had surgery a few months later after having some elevated testing. They found that I had two lesions - a 3mm prolactinoma and acth secreting corticotroph hyperplasia.
I had a short period where I was ok, but I never lost my Cushing's, In fact, I got worse. So after 2 years, it was decided to remove my adrenals. They were enlarged and showed bilateral cortical hyperplasia.
Since the removal of my adrenals, I have had both shoulders frozen. I have had significant myopathy, proximal weakness and loss of stamina. I was not able to return to work. My ACTH which was always normal, rose to over 1000 within a few months of surgery. It is currently near 4000. Since my pathology and my diagnosis is a matter of *dispute* as some doctors cannot accept cyclical patients and/or acth secreting hyperplasia, getting aftercare has been a challenge. Aftercare is not being addressed well by doctors. My next treatment option is radiation with no defined target.
- Be an educated patient. Know the test protocols such as time of test, if ice is needed, medications that mess up testing, etc.
- Whenever possible, get copies of your records and read them. Many times I was told I was normal and I was not.
- Network with other patients to learn.
- Surgical recovery may be a few weeks, hormonal recovery can take years.
- Just because a doctor worked for you, they may or may not work for someone else so best to direct to doctor lists. Opposite is true as well.
- Read reliable information. You may not understand the lingo at first but it does sink in later. Save the links or save the pages to read.
- Everyone's case is different so a best case and worst case may not be you.
- Most people posting on the internet are there because they have problems, Those that do not are out living their lives - which can make you think everyone is having problems - it is not the case.