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.)

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.”

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.

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.)


(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

Thanksgiving, 2005: For What Am I Most Thankful?

For which of God’s gifts are we most thankful? Such questions we typically ask ourselves every year, which is an important part of the celebration of our Thanksgiving national holiday.

For me, the answer was easy.

“Whoso findeth a wife findeth a good thing, and obtaineth favour of the LORD.” (Proverbs 18:22)

My wife, Nichelle, is the most important human in my life. (I described her as the most important person in my life, but David corrected me with, “Dad, Jesus is supposed to be the most important person in your life.”) She is, as one might guess, the one for whom I thank God more often than anything else.

11“The heart of her husband doth safely trust in her, so that he shall have no need of spoil. 12She will do him good and not evil all the days of her life.” (Proverbs 31:11–12)

How much she means to me was made even clearer about three weeks ago. Since last spring, Nichelle had been steadily improving after a long period of being nearly incapacitated by symptoms relating to fibromyalgia. See the posts entitled “What’s Wrong with Nichelle?” and “The Twins are Back,” for a more complete history. But three weeks ago, over the course of a couple of days, Nichelle went from virtually symptom-free to nearly completely debilitated. First, I was angry; then for days I was heartbroken at all that seemed about to be lost.

As Nichelle had regained her strength since last spring, she put into action the things she’d hoped to do. She learned to paint. She learned to sew. She prototyped an absolutely stunning tabletop fountain, hoping to market them and other crafts via ebay. She tackled computer projects for me (a field that had always scared her), rejoined the choir at church, and got back onto the special music schedule. Not bad for a single summer!

When her symptoms had become so severe last winter, I had to start planning and operating my life without her at my side. I never liked it. We might spend weeks looking forward to an activity, and do everything possible to rest up and prepare for it, only to determine on the day of the activity that Nichelle would not be physically able to attend. There were times when the exaustion hit that she would fall asleep in mid-sentence, even when she was doing the talking. A “brain fog” would reduce her normally sharp mind to one that couldn’t record a doctor’s appointment correctly.

17“She girdeth her loins with strength, and strengtheneth her arms. 25Strength and honour are her clothing; and she shall rejoice in time to come.” (Proverbs 31:17, 25)

My wife has incredible strength. Few people know the challenges she has overcome in her life (and, unfortunately, I cannot disclose the most significant ones here; even I was not aware of the extent of a few of them until relatively recently—suffice it to say my wife has had significant trauma inflicted by a number of people in her life). Reading our posts on fibromyalgia will give you some clue to the challenges of everyday life, especially in the past year. Even when every day is a battle, she is almost never discouraged.

Other people use negative things that have happened to them or harm that has come to them as an excuse for failure or their own evil. Nichelle, without a trace of anger, uses them as an example on how not to live, and confidently pursues whatever God has planned for her.

Someone asked me recently what there was about Nichelle that attracted me to her. I distinctly remember the first time I saw her. She walked by in church, and I thought, “Wow!” She was beatiful, but there was much more. Even then her strength of character, devotion to the Lord, and compassion for others were evident. We spent a couple of years working in church ministries together, and the more I got to know her, the more I wished she would go out with me. (I tried for about a year and a half, but couldn’t get her to even notice me.) There were other things, too. She laughed at my jokes! She made every experience we shared more enjoyable. She made denim look classy.

When she moved out of her parents’ house to live with our close friends the Flints, they told her, “I hope you like Doug Wilcox, because he’s over here all the time.” Then I finally got her to notice me. Not many months later we were engaged, and married a [very long] year after that.

“Her husband is known in the gates, when he sitteth among the elders of the land.” (Proverbs 31:23)

She holds our lives together and held me together ten years ago, during the six month period my as-yet-untreated anxiety disorder probably crossed the border to nervous breakdown. I cannot imagine how I might have fared without her undying support. Whatever good I may accomplish in my own life, she will share equally in the credit.

“She stretcheth out her hand to the poor; yea, she reacheth forth her hands to the needy.” (Proverbs 31:20)

Compassion has driven her life. She is a perfect counterpoint to my empathetically-challenged soul, knowing the grace that God has bestowed upon our lives, the glorious change of His second birth, and always wanting to share that with others.

13“She seeketh wool, and flax, and worketh willingly with her hands. 14She is like the merchants’ ships; she bringeth her food from afar. 15She riseth also while it is yet night, and giveth meat to her household, and a portion to her maidens. 16She considereth a field, and buyeth it: with the fruit of her hands she planteth a vineyard. 27She looketh well to the ways of her household, and eateth not the bread of idleness.” (Proverbs 31:13–16, 27)

Nichelle is an excellent parent, and manages a complex, frenetic household with surprising aplomb. (My experiences in just doing the grocery shopping for her convince me that I am best left in the world of computers.) She can tolerate playing “Candyland” or “Chutes and Ladders” with the kids without rolling her eyes, while devastating me when it comes to Scrabble. She teaches the children in dozens of ways throughout the day, and looks after their welfare using her super Mom powers and 360-degree vision.

“Give her of the fruit of her hands; and let her own works praise her in the gates.” (Proverbs 31:31)

There are so many other things to list! I see the evidence of her help every day. She picks out my clothes, cuts my hair, provides my meals, manages my appointments, and sees to it that I don’t stay up all night playing Civ IV. She is a constant encouragment to me spiritually and emotionally. She continually demonstrates to me the power of prayer, and is a model of unwavering faith.

“She openeth her mouth with wisdom; and in her tongue is the law of kindness.” (Proverbs 31:26)

Few would believe this, but we almost never argue. I’d like to claim that this is due to my own nurturing spirit, but it is more due to her spirit of cooperation. (Also, I have learned over the years, that if we do disagree about something, I am almost never the one who is correct.)

I love the shared jokes and common exchanges we have. Some are just so memorable. Years ago, I commented, “You know, I’m not saying you are, but if you wanted to be a nag, you’d be a good one.” She responded, “Well, I wouldn’t have to nag you if you’d do something the first ten times I ask you to.” We still laugh about that exchange. Others are just plain sappy, like how we often IM: LYMZ, our abbreviation for I love you moresey. (Hey, I warned you it was sappy.)

She’s made me a better, more complete, and well-rounded person. With her, I get to be the super hero little boys dream of becoming. Always, I bask in her love and affection.

Our children are gorgeous, too, thanks to her genetic input.

25“Husbands, love your wives, even as Christ also loved the church, and gave himself for it; 28So ought men to love their wives as their own bodies.” (Ephesians 5:25, 28a)

If only all God’s commands were this easy to follow!

28“Her children arise up, and call her blessed; her husband also, and he praiseth her. 29Many daughters have done virtuously, but thou excellest them all. 30Favour is deceitful, and beauty is vain: but a woman that feareth the LORD, she shall be praised.” (Proverbs 31:28–30)

“How beautiful and how delightful you are, My love, with all your charms!” (Song of Solomon 7:6, NASB)

(Mmmmmmmmmmm. I could go on about those charms, but I’ll keep this post appropriate for children.)

Nichelle, I love you.

The Twins Are Back: What’s Wrong with Nichelle, Continued

After being without any fibromyalgia symptoms since late May, “The Twins”—Pain and Agony—are back with Nichelle.

She has had some minor pain this week, possibly connected to the return of cold weather, but we were hoping (and praying) that it would not be as severe as before.

Today she had severe pain in her feet, head, and arms. At one point, she wasn’t able to manipulate the wheel on her sewing machine.

Disappointing … discouraging.

See the entry named What’s Wrong with Nichelle for some background on Nichelle with the disease, and Pain for more information and discussion. (Or view all posts categorized as related to fibromyalgia.)

What’s Wrong with Nichelle?

Other than Fibromyalgia, that’s something we’re still trying to figure out.

Today we visit with the neurologist, who may choose to have Nichelle undergo an MRI. We had blood work done last week, but still need to discuss the results.

Nichelle has had debilitating exhuastion, strange feelings in her limbs, and stabbing pains in her head that spread throughout her body. Put everything together and you get a lot of time spent on the couch or in bed, but she never seems to get enough rest.

Can you believe it? She actually wants me to help out around the house. Sheesh.

I think she's just lazy.

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