Cushing's Bios

My Thanksgiving Day was less stressful this year than I thought it might be, because I had my head examined the day before at Johns Hopkins at about 9:30 in the morning.  By 1:30 in the afternoon, my endocrinologist there, a metabolic bone specialist, had emailed me that I was the proud parent of a 0.7mm lesion on the right side of my pituitary gland.  All day Tuesday I had performance anxiety because I feared that after six months of testing every liquid my body could produce for excessive cortisol, I had finally been given the green light to undergo the Holy Grail of tests and have a look-see at the Master Gland.  I feared that I wouldn’t be able to come up with the goods, but I managed to produce, and now I’m being referred to a neurosurgeon.

It’s been a very long process, even though the testing has only been a six month part of it.  In 2001, I broke  my collar bone while playing tennis.  Granted, I fell down, but it’s not like I made a Boris Becker leap for the ball or anything.  Then in 2003, my first stress fracture, followed by another one in 2005.  Then a crushed wrist on another tennis court mishap–my feet got tangled up when I was moving backward, and within a week, I was having my wrist rebuilt with a titanium plate and several screws.  Then there was  the broken tailbone, followed by the upper arm compression fracture suffered while pushing a small car off an ice shelf in Ohio.  And finally the L4 vertebra that I broke loosening the lug nuts on a tire I was changing with my still-healing broken arm.

After each incident, I would ask the doctors what could be causing all these weird bone breaks, and sometimes they would send me off for a dexascan to see if I might have osteoporosis, but the test always said no, and the doctors were always orthopedists of one sort or another.  They would shrug and say that these things happen.  After the upper arm (this past January), and the subsequent dexascan, the ortho told me that the test said I didn’t have osteoporosis, that if I wanted to try to learn more about the bone formation, I should see an endocrinologist, but he didn’t know of one to whom he could refer me.  He did refer me to his colleague to have my osteoarthritic hip replaced.  I’m 53, by the way.  He told me that going to an endocrinologist was likely to yield nothing, and he opined that I was suffering from “Laree Martin syndrome,” if I need for it to have a name.

My gynocologist, who works in the same hospital center as Ortho 1, we now lovingly refer to him as Frick, referred me to an endocrinologist who also practices in the same hospital center.   I got myself hooked up with her, and she very quickly determined that since I had broken not one, but all of the bones that are considered to be typical indicators of osteoporosis, despite multiple dexascans to the contrary, I had osteoporosis.  Shortly thereafter, she discovered excess, but “unimpressive,” levels of cortisol in my system.

Ortho 2, we’ll call him Frack, saw me prior to my hip replacement, and I complained about my back injury the week prior.  He pronounced that I had not broken my vertebra, but he offered to send me for an MRI, if that would make me feel better.  I scheduled the MRI, had it in the evening, called his office in the morning to report that I had gone for the test, as he had asked me to do, and instead of leaving a message, I got put directly through to the doctor.  Turns out that he was wrong, and it is possible to break your L4 vertebra pulling on a lug wrench with a still-healing compressions fracture in your upper arm . . .  if you have osteoporosis.  When I told him that he didn’t have to worry about my bones in general, because I was seeing an endocrinologist for that.  I just needed him to be extra careful not to break anything when implanting the new hip.  I told him that the endo specialist was working me up for Cushing’s, and he told me that I certainly did not have Cushing’s, because I wasn’t 100 pounds overweight and diabetic.

By September, the endo doc concluded that my results were equivocal for Cushing’s, but she encouraged me to go to Johns Hopkins to the metabolic bone specialist, since there wasn’t another good explanation for my osteoporosis, which had by that time been objectively diagnosed with a bone biopsy.  She felt that she had no choice, clinically, but to treat my osteoporosis as post-menopausal in origin, even though my bone breaks began 8 years ahead of my menopausal symptoms.  Off to Johns Hopkins.

The bone specialist took the history, again . . . did some more testing (blood, saliva, urine, again . . . ) and then consulted with the adrenal team, who agreed with her diagnosis of ACTH-dependent Cushing’s disease.  Unfortunately for all of you who read these bios, it’s more complicated than just Cushing’s, because I had bilateral pulmonary emboili and a DVT in my leg when one of my stress fractures had me on non-weightbearing restrictions for six weeks.  That little incident was also considered a fluke, until about six years later when I was diagnosed with an autoimmune condition that is also considered to be “rare.”  It is a mouthful to say–antiphospholipid antibody syndrome (APS).  It’s main risk is hypercoagulability, and its treatment involves lifelong warfarin (brand name Coumadin), which people mostly call a “blood thinner,” although it doesn’t really act that way.

I feel somehow more than lucky to have two fairly uncommon, fairly complicated conditions with fairly scarey treatment options.  I feel like I need a Fairy Goddoctor to be able to properly manage my surgery and treatment, because of the risks associated with drug interactions with the warfarin, the higher risk of clotting that I already have from the APS, which is apparently compounded by Cushing’s, and my understanding that I’m not supposed to be mixing hormones, including steroids, with the warfarin.  Nevertheless, it was good to know so quickly after the MRI that the result was that I flunked that test as well as I had flunked all the others previously.  I thought I was going to have to stress over that for the entire long weekend, but no.  Instead, I pretty much put it out of my mind until tonight, and now you’re getting the Reader’s Digest version of the last 12 years of my medical experience.

The doctors have exhausted my resilience with all of their certainty, which over the years I relied upon to conclude that I was just clumsy and that my weight struggles with those extra 25 pounds that could pack on in a couple of months, especially when I was recuperating from a fracture, without really changing my diet much, were probably associated with my inconsistent sleep and the fact that I will reach for pizza when I am feeling particularly low.  So when I read here and there about the recovery process after surgery and how difficullt and complicated it can be, I have to admit that my first reaction was that I should quit work, take a year off, spend all my money on travel or whatever I would feel like doing, and then just commit suicide and be done with the whole thing.  And that still has a sense of comfort associated with it when I remind myself of what I’m in for for the next maybe couple of years or more in recovery . . . and possible relapse . . .

But I have a 82 year old mother, and I”m her baby, and I witnessed her sorrow when my brother was killed in a motorcycle accident about 18 months ago, and I wouldn’t put her through that again.  Instead, it’s my intention to take as much time off work as possible after surgery to let myself gather my emotional resources and get over the angry, bruised feeling that I have from both diagnostic processes that have lasted over a decade.  I appreciate that this space is here for newbies like myself to say out loud what most of my friends and family either can’t or don’t want to hear.  It doesn’t really matter so much that anyone is listening; I just need to say it.

Cheers!

Laree (who actually has Cushing’s disease, not Laree Martin’s syndrome)

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