Cushing’s? Inconclusive. What’s Next?

The endocrinologist’s office phoned late today with Nichelle’s test results. Her cortisol levels were 24 one day, and 35 another, well within what’s considered to be a normal level.

The tests did find an elevated PTH (human parathyroid hormone) level, and lowered calcium and vitamin D levels. He’s interested in verifying a vitamin D deficiency. (This makes me wonder if he suspects hyperparathyroidism, but that’s just a guess on my part.)

We’re both very, very disappointed. Cushing’s certainly wouldn’t have been a good thing, but it would have offered something we don’t have at present: treatment possibilities. This leaves us without much of a clue as to where to proceed. Nichelle is determined to find a clinic in Boston (or anywhere, really) that will make every effort to get to the bottom of this. Her symptoms continue to be severe, and worsening. (Although they have become slightly more predictable—many mornings are often somewhat tolerable for up to a couple of hours, but the swelling continues to worsen steadily, and pain episodes occur repeatedly throughout the day.)

I was encouraged by the memory of this Scripture-inspired song I learned in Ejido Constitución, México. (Unfortunately, I couldn’t remember one line and a couple of words, and, although I have the lyrics written down somewhere, I couldn’t find them. … After almost giving up, it seems this is two choruses combined into one song. The latter part I found here.)

Jehová es mi Pastor, nada me faltará;
Jehová es mi Pastor, nada me faltará;
El cuide de las aves, la Biblia dicé asi,
Jehová es mi pastor, nada me faltará.

Nunca, nunca, nunca me ha dejado,
Nunca, nunca, me ha desamparado,
Ni en la noche oscura, ni en el día de prueba
Jesucristo nunca me desamparará.

(Jehovah is my Shepherd, I shall lack nothing;
Jehovah is my Shepherd, I shall lack nothing;
He cares for the birds, the Bible says,
Jehovah is my Shepherd, I shall lack nothing.

Never, never, never has He left me,
Never, never, never has He abandoned me;
Not in the dark night, nor in the day of testing,
Jesus Christ will never abandon me.)

3 Replies to “Cushing’s? Inconclusive. What’s Next?”

  1. I don’t know whether to be happy or sad. Happy that it’s not Cushings, but sad that you don’t have treatment options yet. I’ll keep you in my prayers, of course. Hang in there.

    with love,

    Mark (and family)

  2. Nichelle returns to the endocrinologist in Concord tomorrow. The nurse who phoned to give us the negative results explained that it is very common for endocrinology patients to be frustrated by inconclusive results or results that defy expectations. She encouraged Nichelle to get in for another appointment quickly.

    Nichelle has also been in contact with our de facto patient advocate, Beth. Right now Nichelle is planning questions and strategy for tomorrow’s appointment.

    We’re going to ask about having an MRI on the pituitary and adrenals. So far, Cushing’s is the only strong contender to explain so many of Nichelle’s symptoms. We have also read several Cushing’s case testimonies where even 24-hour free cortisol tests were negative for years, but tumors were found via MRI and removed, alleviating the symptoms.

    On Saturday we went out for lunch with a large group from church to the 1761 Old Mill Restaurant in Westminster, Massachusetts. Nichelle was “fine” for a couple of hours, but by the time we were on our way back (picking up a few things from Wal*Mart), she experienced a rapid onset of debilitating symptoms. Saturday night she alternated (along with the other usual symptoms) between feeling like her arms were too heavy to move, and being intensely irritated by having anything touching the skin on her arms.

    Sunday morning she wasn’t in very good condition, and missed church because NaNi had a cold and couldn’t go in the nursery. Normally we alternate babysitting in that case, but Nichelle was in even poorer condition Sunday evening, and had to stay home again.

  3. If calcium and vit D were low, then it is secondary hyperparathyroidism than primary, which I gather is a big difference. With this new info on PTH, calcium and vit D, I would push for more renal tests- if Nichelle does consume dairy products and this isn’t just a calcium and vitD deficiency. I pray this all comes clear soon!

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