Well, almost a diagnosis...
I made some major progress today in the reach for the diagnosis finish line, which I know personally can take years. I have had Cushingoid symptoms since approximately 1990 and have never been able to receive a definitive diagnosis or treatment. Today, my FIRST-EVER brain MRI returned a diagnosis of a chronic 4 mm microadenoma consistent with old stroke or trauma. Unfortunately, I don't have elevated cortisols to go along with my new results, but with my symptoms, history and the additional information, I now have the attention of my physicians. It is very unfortunate that it has taken 20 years to get to this point. But, my story, as Cushies know, is not unique.
My journey began in my late 30's when I developed thyroid symptoms, hypertension and potassium deficiency practically overnight. I was diagnosed with hypothyroidism and hyperaldosteronism and placed on meds. I went from a slim, attractive and very out-going young woman to a cyclical cushingoid disaster. Everything started changing rapidly. For the first time in my life, I began gaining weight uncontrollably and went from 120 to 180 lbs. no matter how little I ate. My thick, gorgeous hair became very thin and brittle. I developed severe heat intolerance with flushing and edema. Before long, my face was red, round and I did not recognize the tired, overweight woman in the mirror. By 43 I was POST-menopausal, never to have a period again. For the hyperaldosteronism, I was placed on spironolactone and had a CT scan of the adrenals with contrast. I do not know the result of the CT. I was young, naive and took the physician's word as final with no options when I was told "there was no tumor found."
Fast forward.... now 20 years later and still on spironolactone, my symptoms and chronic illness have continued to progress. I have every symptom associated with Cushings except hirsutism. I have had numerous tests to obtain a Cushings diagnosis and all have returned normal results - or so I've been told. Who knows what's normal based on today's range vs those of the past 20 years? Today's abnormal could have been the past's normal... scary...
My biggest hurdle over the years has been that physicians give up on me after a few tests and I'm too fatigued to pursue the chase for the precious diagnosis.
However, at this point, at least my physicians all agreed that I'm sick and I appear to have Cushings. The question now is... Cushing's syndrome or disease???
To go along with my long laundry list of Cushing symptoms, I can now add loss of armpit and pubic hair, migraine headaches and blurring of vision. The additional "loss" of hair and the finding of the pituitary tumor has now brought several questions to the forefront.
1) Is it possible that long-term treatment with spironolactone has caused a pseudo-Cushings syndrome?
2) Are the diagnoses and treatment of hypothyroidism and hyperaldosteronism inaccurate and possibly due to the chronic pituitary tumor?
3) Is is possible that the drug spironolactone has interfered or masked the results of cortisol testing?
4) Do I have Cushing's disease or syndrome?
Well, good news.... for the answer to my difficult to diagnosis concerns I have taken the advice of the "Cushies who know" and have an appointment with Dr. F in LA on January 20th! I was thrilled today to find that my neurosurgeons know of him and are pleased of my choice.
Along with my dx of microadenoma, I have cervical neck degenerative disk disease with chronic pain; i.e., the buffalo hump. After the Cushings "diagnosis" is achieved, I will have a facet injection and, if that provides relief, a rhizotomy to destroy the nerves sending the pain signals to my brain. Until then, it's narcotics and heat only - no anti-inflammatories or steroids that could interfere with the Cushings testing.
So the journey continues, but TODAY I feel closer to the diagnosis finish line. I am 56-years-old (as of the 5th) and live in Big D (Dallas, Texas). I hope to return to my blog in approximately one month with my answer. In the meantime, I'm going to allow myself to file for short-term disability thru my employer and take some well-deserved time off to treat my chronic, severe fatigue and neck pain, and to prepare myself for the grueling testing and procedures to occur soon.
In sharing my story with you, my HOPE is that others will not have to endure YEARS before diagnosis and treatment.
Good health to you all,