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.”