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Endocrinologist Visit: Cushing’s “Not Striking”

Yesterday we finally got to see an endocrinologist. The doctor listened well, and was thorough and knowledgeable. We are grateful to be working with him. (One gripe: No records of any kind had arrived for him, other than a referral letter from our neurologist, although that was of minimal import.)

Frankly, Nichelle’s symptoms puzzled him a bit.

He couldn’t explain the tiny spots appearing on her skin, noting only that they “looked like freckles.” (Yes, they do look like freckles, but freckles don’t generally multiply overnight.)

He did say that Cushing’s was a possibility, but that Nichelle doesn’t exhibit “striking” Cushing’s symptoms, nor would Cushing’s explain all her symptoms. (For example, Nichelle doesn’t bruise easily or have skin that damages easily, which are often found in Cushing’s, and Cushing’s—at least according to him—does not explain all of the pain she is having.) He explained that only fluid shifting could account for the rapid fluxuations in weight, but that normally Cushing’s does not cause such rapid change. (On the other hand, the large fluid retention, swollen face, and inability to keep arms raised he agreed were typical symptoms of Cushing’s Syndrome.)

Note that what may be considered the established symptoms of Cushing’s Syndrome tend to vary somewhat, so what may be considered a definite symptom by one doctor may be disregarded by another. Compare, for example, this entry on Cushing’s Syndome from the Massachusetts General Hospital and Harvard Medical School, and this one, by Gail Adler, MD, PhD, of Brigham and Women’s Hospital and Harvard Medical School. Still another site lists slightly different symptoms, but points out:

Symptoms of Cushing’s syndrome are extensive and can vary from patient to patient.

He ordered a number of blood tests, including rerunning thyroid function tests. The most important, however, will probably be two 24-hour urine collections to test for hypercortisolism. He explained that (as we knew from our own research) the single-point-in-time cortisol test Nichelle had last week was of no value. We also learned that there are cortisol levels below which one is considered normal, and above which clearly show hypercortisolism, but there is a significant “gray area” where a diagnosis may be unclear.

He also said that he didn’t see any symptoms of any other renal or adrenal disfunction.

Nichelle observed that he seemed a bit annoyed (or at least perplexed) that the rheumatologist had told Nichelle she “definitely had a serious endocrine problem.” This may merely have been professional area-of-expertise jealousy, or due to the fact that the rheumatologist did not provide any thoughts on the issue. (I didn’t even notice any discomfort, but Nichelle is much more perceptive than I about such things.)

The samples need to be delivered to Concord, N.H., on Thursday and Friday morning, with blood work being done at those times. We asked if the labs could be done by one of the Dartmouth-Hitchcock labs nearby, but it would have meant waiting another full week after getting a new lab schedule to be approved by Dr. Golding (who is away for a few days)—our fault; we didn’t think of asking until we were partway home. Nichelle is going to try to make the trips herself, if she feels better than today; I’ll act as a backup.

So, with the cortisol tests outstanding, Beth’s Moxie is in a quantum state. Call it Schrödinger’s Soda! (A little non-bio-science Geek humor, there.)

Today Nichelle awoke with another 5.5 pounds of weight increase from yesterday, bringing her current weight to a new record (which I doubt she would want me to publish). We laughed the other day about how I had to keep forcing myself to eat and eat to maintain the sympathetic weight gain.

Other exciting symptoms as of this evening (6:00 p.m.) include, according to Nichelle: “feeling really bad: loads of pain, weak feeling, and the head pain—has been hitting in different sections of my head.”

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The Quintessential NaNi

I’ve been searching for that “one” photograph that seems to be the “real” Naomi at this point in her life. I think this is it. (Click to enlarge.) I find this to be difficult with children’s photos. They are so constantly on the move, and rapidly changing, that capturing what we perceive as their typical appearance is difficult.

Here she is, as usual, bright and cheerful, loaded with energy, and has a fire in her eyes. I took this photo (once I could get her to stop jumping and spinning around shouting “Yippee!”) just after I told her we would be going sledding that evening.

Although now that I look at this carefully, I’m not sure her hair is quite right …

(I added the one on the right in April, 2006.)

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Hope Deferred (for a Day)

12Hope deferred maketh the heart sick: but when the desire cometh, it is a tree of life.

Proverbs 13:12 (KJV)

Despite our best planning, we spent from 1:30 to 6:00 today not being seen by the endocrinologist. (But it’s not really his fault.)

13Now listen, you who say, “Today or tomorrow we will go to this or that city, spend a year there, carry on business and make money.” 14Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes. 15Instead, you ought to say, “If it is the Lord’s will, we will live and do this or that.”

James 4:13-15 (NIV)

What happened was this:

Nichelle and I arrived at the Dartmouth-Hitchcock Medical Center in Manchester about 9 minutes behind schedule. We’d made one wrong turn, which cost us about four minutes. We tried calling, but no one answered before we were actually headed up the driveway.

For the record, until we actually arrived there, we didn’t know we were going to a medical center. We thought our destination was a doctor’s office of some kind. That was our undoing.

We rushed inside (guessing on an entrance) and started waiting in line. In less than a minute, Nichelle asked a staff member for where we should go. She directed us to another counter down the hall. When we got there, the counter was unstaffed. We decided to follow the signs to the main lobby, and met another staff member on the way who said we needed to register.

We were served fairly quickly at the registration desk. They only had to correct Nichelle’s first name and her last name (yes, Michelle Wilcott :: sigh ::), and look up the insurance three times, ask for her birthdate twice and mine once, then run the co-pay.

Then they sent us upstairs, where we checked in again and sat down. After a few minutes, Nichelle was called, and the nurse explained that we checked in too late for the appointment. I was struck instantly by an unusually strong mixture of extreme disappointment and rage. I actually turned and walked away for about 10 seconds.

They did say that if the next patient did not show up, they would let us in, so we waited. Nichelle spent the next 15 minutes with her head down and eyes closed. I spent that 15 minutes reading, rubbing Nichelle’s back, wishing there were something I could do to help, and mentally reviewing verses about God’s sovereignty.

The nurse came out, and told us the next patient had arrived. She listened to our story, and noted that similar problems had occurred recently, and went back in to find us the number for the medical center person who handles such problems.

During the ride home they phoned us to make another appointment; we were grateful able to get one tomorrow—at the same time of day, but in Concord, rather than Manchester.

I’ll have to take another afternoon off from work, but can make up the time later in the week, or take it as sick time (our company policy allows this; I’m not being a weasel).

God knows what He is doing. It is comforting to know Nichelle will be seen by someone who doesn’t squeeze patients in, but rather insists on giving them proper attention and time.

Nichelle has a new symptom. We’re not sure what they are caused by—they might be tiny hemmorages under the skin—but in several places she’s had tiny, dark brown, circular freckle-like spots appear. She noticed a few yesterday. This morning there were more, and this evening still more. They are definitely increasing in number. One that seems to be just forming (based on location and size) is a reddish color, which leads me to think that they are indeed tiny spots of subcutaneous bleeding. There’s also no external irritation or rash present near them.

The other symptoms, pain, dizziness, fatigue, difficulty walking, burning sensations, severe edema, stabbing pains, painful pressure in the head, etc., all continue for much of every day.

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Life Is Swell

Nichelle has requested that I post a few photos to show the extent of the swelling she is dealing with. We actually have one or two photos that are worse, but she doesn’t want those posted.

Since the return of the fibromyalgia symptoms in force, about the time NaNi was weaned, Nichelle has battled rather significant swelling at various times. This winter, it became much worse. At best, the swelling is bad; typically it is horrible.

Note the dramatic difference in the leftmost photo with the middle photo. These were taken only two days apart, on December 25 and 27, 2005, respectively. These primarily show the face, but the swelling involves the whole body. On most days, the swelling is very significant, somewhere between the rightmost photo and the middle photo.

We are awaiting an endocrinology appointment in about a week. The previous endocrinologist to whom Nichelle was referred refused to see her because there wasn’t anything in her records to indicate an endocrinological problem (for the most part, until recently, the swelling hasn’t been our biggest focus). A cardiologist she visited told her, “Sometimes my patients have swelling in their legs and ankles when they return from cruises because of all the high-sodium food.” Our excellent neurologist was more perceptive. Nichelle had brought these photos in to show him—he was stunned. He also pointed out that the swelling alone can cause a great deal of pain.

Our voluntary medical advisor/patient advocate Beth suspects Cushing’s Syndrome or some form of hypercortisolism. So far, Nichelle’s symptoms are consistent with that, including stretch marks on the skin in many places, and swelling varying in degree at different times of the day.

Nichelle spent a couple of hours last night going through photos from the past three years. There are obvious periods lasting several months when the swelling was very bad, and times when it was mostly gone. In general, the very bad swelling lasted much longer than the times without. There’s also a clear increase, over time, in what we might call “base level” swelling, but even within that ever-raising baseline, there are days when it is worse than others, as the photos above show.

I had actually forgotten how much smaller she was even within the past year. No amount of exercise or dieting seemed to help, either. She lost 30 pounds (after Naomi was born) doing the South Beach Diet, and was intensely exercising for an hour every day. Neither one of these things prevented the swelling or the fibromyalgia symptoms from returning, and exercise is supposed to be a very effective long-term treatment for fibromyalgia.

I’ve created a new category on the BLOG for posts related to fibromyalgia. It’s available on the categories list at the right, or from the bottom of any post classified as such.

(See related posts: What’s Wrong with Nichelle?, The Twins Are Back: What’s Wrong with Nichelle, Continued, and Pain; or view all posts categorized as related to fibromyalgia.)

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Geek Humor @ H0//3

Tonight I was reviewing science notes with Isaac (click-and-drag to highlight my answers with your mouse to reveal them):

Q: What’s the densest element?
A: Osmium (actually, it’s a tie between Osmium and Iridium)
My answer: Fifth graderum.

I also dug up Tom Leher’s famous “The Elements Song.” You can hear it attached to a clever Flash animation here, or download the MP3 yourself.

And we had some fun because Isaac couldn’t remember:

Q: What is the most commonly occurring transuranium element?
A: Plutonium.

… which led to me mimicking bits of Doc Brown (Christopher Lloyd) from Back to the Future.

Doc Brown: “I’m sure that in 1985 plutonium is available in every corner drugstore, but in 1955, it’s a little hard to come by.”

Then Isaac confounded me with this one:

Q: What kind of tree did the mad scientist plant?
A: Chemis-try!

So I added:

Q: And what kind of tree did his mathemetician wife plant next to it?
A: Geome-try!

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Pain

(See related posts: What’s Wrong with Nichelle?, The Twins Are Back: What’s Wrong with Nichelle, Continued, and Life Is Swell; or view all posts categorized as related to fibromyalgia.)

Beyond the significant swelling, Nichelle’s life seems to be defined ever more by pain. On Valentine’s Day she had a “good day”—the pain was only mild for much of the daylight hours, and she enjoyed being able to do some work around the house. By suppertime, though, her pain had started to return. Walking became markedly difficult. By 9:00 or 10:00 the pain was steady and even more severe.

Tonight was particularly troubling. Nichelle was feeling pretty good until late afternoon, and was looking forward to attending the midweek Bible study. At 5:30, she announced that she needed to get dinner on and then take a nap. By the time I left work, she determined that she wasn’t going anywhere. By the time I got home to pick up the kids for church, she was having severe pain in her left leg, and remained virtually immobile during the two hours we were out at church, because she (and Nichelle is not one to exaggerate) was afraid if she got off the couch, she’d fall down and not be able to get up.

About the time the kids were being put to bed, the pain became extreme. She took two of the pain medications she has been prescribed, but normally does not use. They didn’t do much. The pain in one leg spread to the other.

Then the head pains started. These were awful.

For ten minutes at a time, over the space of more than half an hour, Nichelle is racked with sharp head pains that almost defy description. Every few seconds she convulses, stiffly curling up, and manages somehow to stifle her cries of agony. Tears well up in her eyes. Her breathing becomes rapid. For a few minutes these pains subside, and then they return.

I kneel beside her, gently clutching her hand, my own body heaving with sobs I cannot control. “I love you,” she whispers quietly when the pains relent for a few moments. I weep even more.

After what the clock says is only an hour, the stabbing pains have passed. Nichelle sits up for the first time all evening.

Perhaps the rest of the night will bring some degree of comfort.

Editor’s note: Thankfully, attacks this severe don’t happen every day, but they do seem to come a couple of times a week, and similar attacks of lesser severity do come every day. The tiring, debilitating pain is there almost always, though. Nichelle took the kids to Wal*Mart on Monday night, for a very quick trip. When she got back she said, “You know, there’s no way I could make it through the [grocery] shopping.” (I knew that—it’s why I’ve been doing the grocery shopping for the past few months.)

Keywords: Fibromyalgia, swelling, severe pain

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Waste!

Am I wrong, or does this strike more of you as pointlessly wasteful?

Happy Birthday Dear Fido, Fluffy and Polly
Tue Feb 14, 2006 08:23 AM ET

LOS ANGELES (Reuters) – They already have their own designer clothes, health insurance and therapists. Now more and more American pets are enjoying their own birthday parties.

A surprising number of pet owners host birthday parties—complete with party hats, cake and guests–for their dogs, cats and birds, according to a survey released Monday by California-based Veterinary Pet Insurance.

The firm reported that 58 percent of its policyholders who responded said they had hosted birthday bashes for their pets.

Veterinary Pet Insurance, which marks the occasion by sending each insured pet a birthday card every year and a coupon for free food, said other surveys have calculated that about six million American dog and cat households celebrate birthdays.

Three Dog Bakery, a specialty store in upscale Newport Beach, California, gets about 20 requests a week for pet birthday cakes, said owner Sandy Deem.

© Reuters 2006. All Rights Reserved.

I have nothing against pet ownership, but it seems to me that when one is at the point of having birthday parties for pets, it’s time to evaluate spending habits. Imagine how many orphans the costs of six million birthday parties for pets would feed, clothe, and house annually, or how many missionaries the money could support.

Don’t even get me started on pet psychotherapy …

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Witness the Evidence, Ye Doubters

I wrote this in an earlier post:

We have been leaving our sleds out most of the winter as offerings to the snow gods. So far it has been working, although I had to correct the kids on making the proper offering. Scattering the toboggans about the yard is not the way to get the snow gods’ attention: One must place the sleds vertically, up against the deck or porch railing, as if ready for instant use. You don’t want to get rain all winter, do you?

I offer hear clear photographic evidence that such beliefs are indeed rational:

Above left: Our offering to the snow gods, carefully placed yesterday morning.

Above right: The same scene less than 24 hours later.

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Naomi’s Stories

NaNi is indeed a delight. She’s started to put together stories. Last night she said, “See Uncle Phil. Rocket ship. Knock, knock, knock.” (You want to visit Uncle Phil, and you’ll take a rocket ship to get to his house, and knock on the door?) “Yes!”

She’s always been fascinated with her clothes that have pockets. Just before bed she had her hands in her pockets, and sighed, “No money.” I laughed. “Two pockets,” she announced. She’s learning how to identify quantities.

Earlier tonight the little weasel was trying to get into my pocket. Are you trying to get my wallet? “Yes, Daddy.” “Why?” She jumped up and down with glee: “Credit cards!” Sometimes she’s too smart.

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Caption this Photo (of Naomi)!

We took this picture during David’s seventh birthday party. Nichelle’s suggested caption is below. Can any of you beat it?

“What do you mean I’ve had too much sugar?”

Now, let me go reserve a therapist for NaNi.