Category: Nichelle

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Analyzing the Symptoms

A Brief Update

There are no more good days. Occasionally, Nichelle will have a few hours when she is able to be somewhat active, but it appears that even days like our 1/2-day MFA trip are now impossible. The pain is more severe, and Nichelle’s general debilitation is both more severe and the episodes last longer. Walking any real distance is nearly impossible, although she did complete a less-than-30-minute trip to Wal*Mart last week, this is exceptional. There are unexplained symptoms, like the tiny purpura spreading through her skin, as well as inexplicably normal test results, such as for free T4 (one of the thyroid hormones) and cortisol.

It’s very frustrating. Our most dedicated doctor admits that this is outside his specialty (neurology), and other doctors seem unwilling to exert the effort to find the cause of these problems. If we were to diagnose based merely upon symptoms, my conclusion would be hypothyroidism on top of fibromyalgia. However, the hormone tests run so far for hypothyroidism have been negative. (But hormone problems are often difficult to diagnose, and may defy test-based diagnosis for years.)

Symptoms such as she is now suffering go back all the way to 1992, although they have been increasing in severity enough to be very troublesome for about the last 7 years, the last two years have been much worse. More detail and history are available by clicking on the fibromyalgia category for our BLOG.

Nichelle has copies now of most of her medical records. We are leaving no stone unturned. The common theme expressed by doctors is, “I dunno.”

On the bright side, the illness did make shopping for Nichelle’s birthday presents easy: DVDs from Amazon.

By the way, if you haven’t read this post about Nichelle, you should!

Symptom Frequency Possible Diagnoses
Severe edema (fluid shift) with weight fluctuations of 5 lbs. in the course of a day. The swelling varies in intensity, especially around the face, but is always bad. Continuing. Cushing’s Syndrome, Hypothyroidism.
Significant weight gain (over 65 pounds) in the past year, despite healthy diet and a significant daily exercise regimen (until last fall, when exercising became impossible). Constant. Weight tends to suddenly shoot up every few weeks. Cushing’s Syndrome, Hypothyroidism, medication interactions (from the tricyclics used to prevent migraines and sleep problems).
Burning sensations, primarily in the hips and back. Many hours each day. Fibromyalgia, hypocalcemia, secondary hyperparathyroidism.
Pain. Moderate to severe pain nearly always. Episodes of severe, stabbing pain on a daily basis. More than one episode per month of pain as severe or more severe than unmedicated childbirth. Daily. Fibromyalgia, migraines, hypocalcemia, myofascial pain syndrome.
Difficulty walking or standing. Constant. Currently able to maintain only a decreasingly short amount of activity at a time. Unknown.
Rapid deterioration of “normal” health over the space of 1/2-hour (normal as defined by the current baseline: still not very good, but able to function with only minor or moderate difficulty). Daily, when basal health is temporarily good enough to demonstrate a decline. Hypothyroidism, fibromyalgia.
Extreme discomfort in having anything touching the skin on her arms. (Skin sensitivity.). Weekly. Unknown.
Pins-and-needles sensations all over, especially the head. Daily. Fibromyalgia, secondary hyperparathyroidism.
Periodic cognitive difficulties. (This is the only symptom that has been less severe than a year ago, we believe because of partly successful treatment of sleep-disturbing migraines.). Several times a week. Hypothyroidism, fibromyalgia, hypocalcemia.
Sudden or prolonged exhaustion. Nearly daily. Hypothyroidism, fibromyalgia.
Painful, unusually strong sensitivity to having anything cold come in contact with skin. Constant. Fibromyalgia.
Feeling very hot or very cold not in conjunction with actual temperature. (Feeling extremely cold often immediately precedes episodes of severe pain.) Night sweats. Daily. Hypothyroidism.
Occasional inability to grip small items, such as table utensils. A few times per month. Unknown.
Inability to raise arms or hold an item such as a cell phone against her ear or face. Constant. Cushing’s syndrome.
Difficulty putting weight on wrists to support. Constant. Possible bone problems, hypocalcemia, secondary hyperparathyroidism.
Hair breakage/brittle hair. Hair loss on arms, legs, and hands. Continuing. Hypothyroidism.
Small spots that look like dark freckles that are appearing all over the skin and slowly multiplying. The ones that are a couple of weeks old are now increasing in size. (I had previously labeled these as purpura, but Dr. Hall told us that purpura describes such spots only when they are caused by platelet problems.) Continuing to increase in number. Unknown.
Severe pain in the bones of her wrists, feet, collarbone, and ribs. Constant. Secondary hyperparathyroidism, possible bone problems, hypocalcemia.
Stretch marks and skin discoloration over an ever-increasing number of areas. Continuing to worsen. Cushing’s Syndrome, may be secondary to the significant edema and weight gain.
Dizziness. Several times a day. Fibromyalgia.
Nausea. Several hours each day. Hypothyroidism, fibromyalgia.
Low body temperature (1 degree or more below normal) most of the time. Constant. One or twice a week temperature approaches (but does not reach) normal. Hypothyroidism.
Low calcium level (hypocalcemia). Current. Vitamin D deficiency, parathyroid problems.
High PTH (Human parathyroid hormone) level. Current. Parathyroid problems, could be secondary to vitamin D deficiency.

The official diagnoses, which have not helped with a treatment or identified the causes (most are merely descriptions of symptoms), for the most part, the following:

  • Fibromyalgia
  • Myofascial pain syndrome
  • Secondary hyperparathyroidism
  • Vitamin D deficiency
  • Hypocalcemia (probably caused by vitamin D deficiency or parathyroid problems)
  • Neurosomatic syndrome
  • Periodic limb movement disorder (believed being successfully prevented with medication)

What We’ve [Mostly] Ruled Out:

Fibromyalgia is, itself, generally diagnosed by ruling out everything for which a definitive clinical test exists. Here are the few other things that have been ruled out:

  • Lupus (this has been repeatedly tested for about the past 10 years; it has always been negative)
  • Heart problems/heart disease
  • Diabetes
  • Sickle cell anemia
  • West Nile virus
  • Lyme disease

In addition, Cushing’s Syndrome seems less likely than hypothyroidism, due to the fact that some classic symptoms of Cushing’s are absent.

This analysis is hardly complete; there are certainly other possible explanations of these symptoms. If you have other suggestions, please let us know. Personally, I think it’s just Munchausen Syndrome. (Or maybe it’s Munchausen Syndrome by Proxy, just like in The Sixth Sense.)

At any rate, keep praying.

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Mostly Mummies: Our MFA Trip

Never visit the Museum of Fine Arts in Boston without being accompanied by Debi Costine. Back on February 27, we got to do just that.

Nichelle spent the three days before the trip in “intense rest,” hoping to be well enough to go with us. (I hadn’t seen her so determined to do anything major since singing in the Christmas program in mid-December.) Thankfully, she was able to go, although by the end I wished I insisted she use a wheelchair for at least part of it. (In the weeks since, her condition has gotten worse, and I don’t think we’d even try such a trip now.)

We also weren’t sure we could convince David to come. He seemed fascinated, several years earlier, by the mummy at the Museum of Science in Boston, but in the interim years, that fascinating had turned to fear. I spent three weeks trying to psych him up, but it was Debi who spoke to David the night before and convinced him that he would be fine. By the end of her call he was eagerly anticipating the trip.

Above: Debi Costine provides an introduction to ancient Egypt.

What a wonderful trip! The kids loved it, John especially favored this museum over the science-centered ones that I typically drag him to.

Outside the Egyptian wing, Debi sat us down, gave us handouts, and introduced us to things to look for in the Egyptian artifacts. Among them was a cartouche—generally an ellipse with a line on one side, that would be marked with one or two sets of hieroglyphs. This would indicate the name of a god or a king. We also learned about the burial and afterlife beliefs of the ancient Egyptians, including the false door that the spirits would use to retrieve food offered to them.

One of the things Debi stressed was the grain of truth that many cultures preserved after the Flood in their understanding of spiritual things. It was very interesting to see how a proper understanding of death and eternity became corrupted over the years.

Above: Pointing out the hieroglyphs adjacent to a cartouche, indicating the name of a god. (Note Debi’s red hair.)

One of the ideas I found fascinating was that the existence of one’s name carved in stone allowed the existence in the afterlife to be perpetuated. In some cases, pharaohs or other leaders who fell out of favor were “eliminated” after death by having the names chiseled out of their places, as well as statues destroyed. One pharaoh ordered his name hieroglyphs to be carved especially deep. I wonder if it occurred to them to carve it someplace and then hide it.

Above: Barley (along with a crude mortar and pestal) dating from up to 6,000 years ago.

When Nichelle and I attended the MFA last year, we were awestruck by the Egyptian artifacts. They project such a feeling of age. It is truly amazing to walk among them. The barley shown above is a small thing, but it’s astounding to find it preserved for five or six millenia.

Above: King Menkaure (Mycerinus) and queen (possibly Khamerernebty II).

I absolutely love this statue of King Menkaure and his queen. This couple is elegantly and lovingly rendered, and it impresses me that the artists were able to perfectly recreate the effects of sheer cloth in a stone statue. Note that they are actually clothed, at least in the custom of the time. The statue is unfinished. (There is no name on it; the king’s kilt pleats are not carved, and the base is unfinished.) There are more photos, a write-up, and an audio piece here at the MFA site. Note the folded napkins in Menkaure’s hands. These were authority symbols. Some later statues had rectangular napkins that look more like blocks of wood.

Above: The Egyptian kings would place these stories about their conquests on the borders of their lands. Debi was able to explain the story carved here in much more detail than the museum plaque next to it.

Above: Check out the cartouches on the base of this statue. These have the hieroglyph pairs we were hunting: a sun with a bird, and a bee with a sedge plant. David just told me, “I was the first one who found that one!”

Above: All the geeks in ancient Egypt used these these snazzy pocket protectors. Seriously, it’s a scribal palette, belonging to “The royal draftsmen of the Lord of the Two Lands, Amenemwia.”

Above: The center of the Egyptian funerary room. That’s a bolt of linen in the left foreground that is over 4,000 years old. Amazing!

The funerary room was astounding. It offered much more than the few things we think of as stereotypical Egyptian art surrounding the funeral rituals. Interestingly, the Egyptians were quite reluctant to change the formulae of their rituals, even over the centurals. So, even when the custom of removing the organs and storing them in jars had changed, faux jars were still placed in the burial chamber.

Above: These ceremonial eyes were painted on the sides of coffins to allow the body entombed within to see out.

Above: Debi noticed something about this mummy mask that she had never seen before: It has a beard. This mask (dating from the time around Joseph’s life) may show the result of a Hebrew influence, as the Egyptians didn’t wear real beards, perhaps as a result of Joseph’s revelation of his origin and rise to power.

Above: You’ve read the Old Testament many times, but always wondered what Baal looked like. Now you know! (This one is missing his weapon or thunderbolt. Maybe it was a child’s action figure. It’s about the same size. “Hey, kids! Collect all the Canaanite deities!”)

Above: This Hittite stamp-cylinder seal was impressive, as were the other seals and commercial artifacts, including a set of balance weights and numerous cuneform tablets.

Outside of the Egyptian area, was one of the things we were all really looking forward to seeing: A fragment of a plate (probably smashed by the forces of Alexander the Great) from one of Xerxes four palaces. Debi likes to encourage her students to imagine that Queen Esther herself may have touched it.

Above: Fragment of a Royal Plate
Southwest Iran (probably from Perseopolis, Palace of Xerxes), 485–464 B.C. Diorite. Queen Esther just might have used it. (My photo is blurry, so I’ve linked the image to a better one at the MFA.)

By the time we got to the few more modern things we looked at (much of the 1st century A.D. art, especially from Corinth, is, shall we say, inappropriate for children), they just couldn’t compare to the marvel of the ancient Eyptyian work. They all seemed so … recent.

Above: This painting contains owls hidden within it. I was terrible at finding them, but the kids did well, and really enjoyed the task. This photo isn’t perfect, but I couldn’t find the painting this evening when I searched the online MFA database—even though I found it a few weeks ago.

I’ll also include what is one of my absolute favorite paintings in the MFA. When I first saw it, during my company’s “Winter Thaw” event, I was struck by how beautiful it was. The color is amazing, and it seems photographic in its realism. It really stands out.

Above: Portrait of a Young Woman, possibly Countess Worontzoff, by Marie Louise Elisabeth Vigée‑Le Brun. French, 1755–1842.

And David, the little weasel, announced that his favorite part had been the mummies.

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Another Dead End: Endocrinologist II

Nichelle heard back from the most recent endocrinologist’s office. Here are his notes:

  • No further assessment
  • Fasting plasma glucose at some point in the future, not running any more tests.
  • Maybe another fasting glucose—talk to the PCP about that
  • Can find nothing from an endocrine standpoint

However, the office is checking on a referral to an endocrinologist in Boston.

This is really, really frustrating. Hypothyroidism on top of fibromyalgia explains nearly all of Nichelle’s symptoms. Every doctor except the endocrinologists Nichelle has seen seems to think this exhibits as a clearly endocrinological problem.

I’m going for a walk.

Later news:

Nichelle has been referred to a specialist in Boston. The endocrinologist did agree to the referral, and will be following up on the results. This is some progress.

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Another Appointment … Rheumatologist II

Today I had my appointment with the new rheumatologist. He’s requesting all records from three different doctors. I was given a new pain med and taken off one that I was recently given by the ER doctor (although I’ve only taken it once). I will have a follow-up appointment in four weeks.

He has no explanation for several of my symptoms, but states the other problems that I’m having is fibromyalgia. Here’s a great site to find out more about fibromyalgia: http://www.fibromyalgia-symptoms.org.

The doctor today, too, agrees that the other problems that I’m having are endocrine. I am also waiting to hear back from the new endocrinologist. He wanted to go over my tests results from the first endocrinologist, who claimed that I didn’t have an endocrine problem!

I have been checking my temperature for several days now and the highest it’s been is 98.0 and the lowest was 96.3. The typical range in 97.2 to 97.7.

Next week I have an appointment at the pain management clinic.

Waiting, praying, hurting, and crying, but through it all we know God is ultimately in control and already knows the outcome. Thank you for your continued encouragement and prayers.

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Endocrinologist II: Not Much to Tell (Yet)

Nichelle was very impressed with the endocrinologist she visited today. She described him “as thorough as Dr. Rescigno,” which is a huge compliment.

Dr. Bhaghayath took an interest in everything Nichelle brought in (unlike the last two doctors she has seen), including things that seemed “off-topic,” such as the bone scan results. He was amazed by the photos showing the water retention. He reviewed our symptom list, and commented that Nichelle had “a lot of things going on.” He wanted to know if Nichelle had a family history of thyroid problems. (Getting a family medical history for either one of us is a rather amusing undertaking.)

Nichelle did ask him to confirm any connection between the vitamin D deficiency and the serious symptoms she is now experiencing. As we expected, he said they were “totally separate,” but Nichelle wanted a second opinion.

Unfortunately, some critical records were not sent over, despite the fact that Nichelle checked on them this morning. His concern is that (just as Beth has suggested), critical endocrinology tests were missed, and only the cursory levels were measured, especially for thyroid function.

He’s going to examine the records, after Nichelle kicks some butt to get them sent over, and call Nichelle back. (This appears to be a failure in the medical records department, rather than the doctor’s office, for a change.)

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Paging Dr. House …

This is the kind of doctor we need.

Nichelle asked me to post some notes from today’s somewhat discouraging doctor’s visit. This was an apointment with a new doctor, who, we hoped, based on recommendations and screening, would listen carefully to the symptoms and be determined to find a solution. Instead, we are being asked to visit specialists in fields we have already visited, and have little to be encouraged about.

Here’s what was observed at the appointment:

  • Nichelle is now 5′ 6″ tall—two inches taller than the last time she was measured (some years ago; one doesn’t expect to get taller after the age of 25 or so). (Note: We don’t have a good benchmark for when this growth occurred; we’re trying to find out.)
  • Today she had a 101.2° fever, and was unaware of it. (When’s the last time you ran a slight fever and felt no different than any other time?)
  • Her blood pressure was slightly elevated.
  • Her weight has reached a new high.

Her new doctor wants her to see another rheumatologist, and another endocrinologist, and work with a pain management center (Southern New Hampshire Medical Center has one).

He believes the hair loss is an endocrinological problem. (Our endocrinologist who is treating Nichelle for vitamin D deficiency had no explanation for this particular symptom.)

The new doctor concluded that successful pain management would allow exercise, and that would lead to weight loss, despite the fact that the onset of these latest, ever-worsening symptoms that struck last fall occurred—contrary to typical fibromyalgia—during a long period of significant daily exercise combined with careful diet, which, incidentally, did not produce any weight loss.

Nichelle really feels like yet another doctor is not truly listening to her. I’m not completely convinced that’s the case, because he did immediately recommend two specialists and the pain clinic, so it’s not like he’s saying nothing’s wrong—it’s just that we can already discount one of his conclusions and he’s not really willing to listen to that (yet). The biggest problem is we have a neurologist who has a marvelous doctor-patient manner, and just projects a vast amount of caring, even when he is hearing about symptoms he can’t correct in his speciality. Nichelle called him yesterday, because he wanted to be kept informed of her overall medical issues—that’s not very common in a specialist. So, just about every doctor we’ve ever had seems inadequate in comparison.

I wanted to quote Job 10:2–3, 8 for this post, but Nichelle wouldn’t let me, so I’ll go with some verses from Psalm 30 instead, although when I heard these this morning (especially verse 2) they made me cry:

1I will extol Thee, O LORD; for Thou hast lifted me up, and hast not made my foes to rejoice over me. 2O LORD my God, I cried unto Thee, and Thou hast healed me.

10Hear, O LORD, and have mercy upon me: LORD, be Thou my helper. 11Thou hast turned for me my mourning into dancing: Thou hast put off my sackcloth, and girded me with gladness; 12To the end that my glory may sing praise to Thee, and not be silent. O LORD my God, I will give thanks unto Thee for ever.

Psalm 30:1–2, 10–12

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A Friday Night Date with My Wife: E.R. Live!

Friday night Nichelle and I determined we hadn’t been out together in a while, so when I got back from the Museum of Science with the Quinlans, we decided to go someplace somewhat exclusive and very fancy, that we’d never tried before.

We were impressed with the curbside service—a staff member actually came out to the door and showed us in, which is a level of service far above that to which we are accustomed.

Once inside, we disocovered there would be quite a wait—this place is popular—so we settled down to wait a bit in the lounge. We were impressed by the obvious expense that had gone into the venue. Millions of dollars had been spent on making this place stand out from its competition, and everything looked beautiful, even though some parts were still being renovated.

We were at the renovated (but still expanding) Southern New Hampshire Medical Center‘s emergency department.

Nichelle had been in severe pain from Thursday afternoon on, and by Friday evening it had gotten unmanageable.

After a brief wait (only about 4 hours)—next time Nichelle will need to be either bleeding profusely or pregnant to ensure rapid attention—they got Nichelle checked in, and administered a couple of different drugs by IV, the second of which actually helped. She was still having severe, stabbing pain in her ribs every 5 to 10 minutes, but most of the other pain was significantly reduced.

At 5:00 a.m., she’d been released, and we took a trip through our favorite drive-through: Brook’s Pharmacy, and watched the sky brighten with dawn. How romantic!

This morning Nichelle is feeling much better. The grip of the pain seems to have lessened, and she’s able to move around again without difficulty. She even made me a breakfast sandwich (when I finally got out of bed around 11:30), and played a few rounds of Burnout 3: Takedown with Isaac, David, and I, which she hasn’t done in months!

This brings me to an interesting, if merely anecdotal, observation about the pain she constantly suffers, which varies in severity. It would seem, based on how much better she was this morning, that the medication delivered by IV interfered with a feedback loop that was keeping the pain severe and inceasing it in severity. In short, stopping the pain temporarily led to stopping the pain for a much longer period. Fascinating.

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Another Dead End

Nichelle just finished with her second endocrinology appointment. She was carefully prepared, and her questions were answered frankly and accurately.

The one test that continues is for vitamin D deficiency. This is a fairly common problem, and could be lowering the calcium absorption, which can lead to bone pain.

However, that explains almost none of the symptoms Nichelle has.

The endocrinologist told her that, after having two clearly normal 24-hour free cortisol tests, Cushing’s Syndome is definitely not the problem.

Nichelle explained that her health has been cyclically poor for the past seven years (with some symptoms apparent even earlier), but that the past year has been dramatically worse. She asked him what explanation he can offer for her apparently-endocrine-related symptoms: Severe swelling/fluid retention that continues to worsen, as well as the pain and other symptoms described.

He has absolutely no explanation for the symptoms. When Nichelle asked if an endocrinology specialist or clinic in Boston might help with a diagnosis, he suggested Nichelle go back to her primary care physician for more exploration, and recommended against seeing another endocrinologist.

So, these are the symptoms for which we have no treatment possibilities at present:

  • Severe edema (fluid shift) with weight fluctuations of 5 lbs. in the course of a day.
  • Significant weight gain (over 65 pounds) in the past year, despite healthy diet and a significant daily exercise regimen (until last fall, when exercising became impossible).
  • Constant burning sensations, especially in the hips.
  • Pain. Moderate pain nearly always. Episodes of severe, stabbing pain on a daily basis. More than one episode per month of pain as severe or more severe than unmedicated childbirth. Stabbing, burning pains in collar bone and ribs.
  • Difficulty walking or standing.
  • Rapid deterioration of “normal” health over the space of 1/2-hour (normal as defined by the current baseline: still not very good, but able to function with only minor or moderate difficulty).
  • Extreme discomfort in having anything touching the skin on her arms.
  • Pins-and-needles sensations all over, especially the head.
  • Periodic cognitive difficulties. (This is the only symptom that has been less severe than a year ago, we believe because of partly successful treatment of sleep-disturbing migraine pain.)
  • Sudden or prolonged exaustion.
  • Severe sensitivity to having anything cold come in contact with her.
  • Feeling very hot or very cold not in conjunction with actual temperature. (Feeling extremely cold often immediately precedes episodes of severe pain.)
  • Occasional inability to grip small items, such as table utensils.
  • Inability to raise arms or hold an item such as a cell phone against her ear or face.
  • Difficulty putting weight on wrists to support.
  • Hair loss on the head, arms, legs, and hands.
  • Purpura—small spots that look like dark freckles that are appearing all over the skin and slowly multiplying. The ones that are a couple of weeks old are now increasing in size.
  • Severe pain in the bones of her wrists and feet, and in her collarbone.
  • Stretch marks and skin discoloration over an ever-increasing number of areas.
  • Dizziness
  • Nausea
  • Low body temperature (1 degree or more below normal) most of the time.

At this point, I can only thank the many of you who are following this for your continued prayer, encouragement, and support.

The Lord provides strength beyond our human means. This doesn’t mean we (and especially me) are not profoundly affected by Nichelle’s illness. I’ve noticed my “highs” have gotten a bit lower, and I do spend a short time each week—usually on the weekend—crying from “significant sorrow/frustration,” (probably because I am at home more and less busy while at home) but I am not in despair, nor am I depressed, and this doesn’t affect my ability to enjoy life or enjoy God and His many blessings. Most of the time I feel what I can only describe as a “dull ache.” But, God gives Nichelle and I patience and hope when there is no human hope.

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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.)

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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.”