Wow, it's hard to believe that it's been over a year since we've posted on this blog. Life has sure thrown us through the fire medically (and thus emotionally) over the last couple of years. But,finally, I have hope that things will get better - partially because they are all. With a lot of help from a lot of people.
I had the title of "Hormonal Gal" or "Adrenaline Rush" (although the latter would have been medically false) for an entire blog in my head for a while now. But realistically, where is a mother of three who still has 2-3 medical appointments per week going to find the time to start a new blog? I wanted to start at the beginning of my Cushings journey - which I realize now would have been several years ago. I wanted to document my physical changes, the psychological impact, what I've learned, how I think I have changed, and how I still want to change. But it's been too overwhelming on where to start. So instead, this is going to be a hodge podge of what I feel like sharing, when I have the time to share it.
I am almost 12 weeks post-op - the time which I am announced "medically clear" to resume all normal activities - ie. I don't have to worry about breaking the patch in the membrane that separates my brain from my sinuses. Which is really encouraging for me, as I really need to begin exercising again to feel good. I still feel weak and out of shape and a bit depressed that my body is not changing back as quickly as I would like for it to. But over the past week or so, I have begun to feel physically better, and more importantly, I feel like I am coming out of a rather dark place (aka depression) that seemed to overtake me a few weeks after the operation.
I had on-and-off insomnia for a few years prior to my surgery (yes, another side affect of Cushings), and last night and again tonight I find myself wide awake at 3 AM. Mark says this is encouraging, as hopefully it means my steroid dose is becoming too high, which would mean my pituitary and/or adrenal glands are beginning to function again, so I have a total sum of too much cortisol. That would be nice. I have a test on Wednesday to test their function, and I am hoping, hoping, hoping that we get good results so that we can begin tapering or even eliminating the hydrocortisone. But my negative self worries that the Cushings is just returning. Unlikely at this stage, but still something that is a possibility, which would require another surgery...
My story with Cushing's involved a lot of people (myself included) believing that I had cumulative stress from managing Adam's heart condition, Mark's detached retina, and just living the day-to-day life of a working mother of three. But when my symptoms continued to get worse, I fortunately had two advocates who encouraged me to continue to seek a cause for my symptoms (thank you Christina and Dad!), when my family practitioner rather coldly told me over the phone that my diagnosis was complete: hypertension & anxiety. Our conversation took place in mid-October, and I had not spoken with him since. I felt the need to provide him with some feedback, partially for self-vindication (I wanted him to know that I was NOT a crazy hypertensive lady that he believed me to be), but also partially so that maybe he will pause just a little before he writes another patient off who experiences a hard-to-diagnose condition. So yesterday I wrote him the following letter, which I delivered to him through the patient portal. My mom thinks that he will not respond due to legal concerns. But at least he'll know:
Dr. Giglio,
It has been several months since I last spoke with you, and
perhaps you already know about my condition from Dr. Berman, since I had to
receive cardiac clearance from him prior to surgery in January.
I believe that you have the best of intentions as a doctor
and want to treat your patients successfully, and so for that reason I am
writing you this note.
I began seeing you regularly last August (2014) after
experiencing episodes of orthostatic hypotension. These symptoms quickly escalated into an
overall feeling of being unbalanced and “foggy,” and soon I was also experience
very intense anxiety. I had seen you in
January after experiencing episodes of chest tightening, which we both thought
were potentially panic attacks. So, reasonably, we thought I might just be
suffering from anxiety. I began seeing a
psychiatrist, but other symptoms continued to progress. I began also experiencing periods of heart
palpitations, even when I was relaxed.
You agreed to a 24-hour holter monitor test, and when it presented some
unusual results, you referred me to Dr. Berman.
At my appointment with Dr. Berman, he observed that my blood pressure
was high, so we agreed to monitor it for a month. During the course of that month, my blood
pressure rose to dangerously high levels, so I weaned the baby and began blood
pressure medications. At my prompting,
you also agreed to run another round of labs to find out why my blood pressure
was so high. My potassium levels came
back low, and so Dr. Berman ran a lab to test for Hyperaldosteronism. When this test came back negative (around
mid-October), you called me to inform me of the results and told me that my
heart was fine, I no longer needed to see Dr. Berman and added a beta blocker
to my medications to help address my shaky hands. I told
you that something was just not right --- it is not “normal” to go from a
healthy 36 year old to someone with exceedingly high blood pressure over the
course of a month, and that I would like to see an endocrinologist. I asked for a recommendation, and you told me
that I did not need to see an endocrinologist. You instructed me to take the
blood pressure medication, continue to see my psychiatrist and check back with
you in three months.
I knew something was just not right, though, so I researched
doctor reviews online and had an appointment with an endocrinologist by late
October. He ran lab work which came back
abnormal, had me do a 24-hour urine analysis test (also abnormal),
dexamethasone suppression test, and finally ordered an MRI of my pituitary
gland. He diagnosed me with Cushing’s
Disease by mid-November. I had the tumor
removed from my pituitary gland at the beginning of January. I recovered well from surgery, and am now
slowly recovering from the damage that Cushing’s has done to my body. Full recovery is expected, but it can take
many months.
After our last call in October, I felt that you gave up on
helping me figure out the root cause of my symptoms and were satisfied with
treating the symptoms themselves. It was
stressful and lonely needing to coordinate my care on my own without the
guidance of a family practitioner, but I learned to be assertive and trust
myself as the true expert of my own body.
I hope in the future you will listen more closely to your
patients, and trust that they are the experts in knowing when something is
“off” with their bodies. After I was
diagnosed with Cushings, I learned a lot more about the symptoms, many of which
I clearly presented.
I wish you and your staff the best.
Sincerely, Katherine Griffith
