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.
I don’t get what they’re saying:
What does that mean? They don’t want to see Nichelle anymore?
But then they talk about other possible tests. So do they want to see her or not?
How does this fit in with “no further assessment?” Does this mean they think she should do this test, but they don’t want to be the office to do it for her?
I know you’re frustrated, and UNDERSTANDABLY SO, but when you get a minute, could you please ellaborate?
Thanks!
I love you guys so much! I’m sorry you’re going through this.
These are pretty much just the endocrinologists’ notes, as read by the office staff.
I think the bottom line here is he’s saying that he doesn’t find any endocrine issues, and, other than some glucose testing, there’s nothing else of which he can think.
This is funny.
The specialist to whom Nichelle’s endocrinologist referred her is a reproductive endocrinologist. However, if Nichelle’s endocrinologist II will fax over the records, endocrinologist III will take a look, and either take the case or refer to [an as yet unknown] endocrinologist IV.
Yesterday was a really bad day for Nichelle. The edema in her face was the worst either of us has ever seen. One of the observations for Cushing’s Sydrome is that the earlobes cannot be seen from the front of the patient’s face due to the swelling. Yesterday, no part of Nichelle’s ear was visible from the front. Nichelle took pictures.
She was so worn and spacey that I almost came home from work after talking with her. Evening brought a slight relief from those symptoms, with an intense increase in pain.
Endocrinologist III has agreed to see Nichelle, but doesn’t have an opening until June. The receptionist (this lady is amazing) is going to talk with the doctor and see if Nichelle can get in earlier.
I’m glad he referred you to an endocrinologist in Boston—obviously this is not an obvious problem and most MDs don’t want to deal with it.
You are constantly in my prayers throughout the day, Nichelle!
You’d think from reading our BLOG over the past few weeks the only thing going on in our life is Nichelle’s illness, but stay tuned for a really cool post about our trip to the MFA with BMT!
You are always in my prayers, if I can be of any assistance, let me know!! I love you guys!!!
Nichelle spoke with Dr. Hall (Endocrinologist III) today, while trying to get an appointment sooner than June. Nichelle’s body temperature is very low today (around 96.5), and she has been falling into deep sleeps all morning. She’s also been in very significant pain.
Based on her experience of deterioration over the past month, June seems to be a very long time away. Dr. Hall is going to try to work something out to see Nichelle sooner.