Paging Dr. MIA

So I finally heard back from the doctor, and by heard back from her I really mean the lab called me and left a message saying I needed to schedule an appointment for my "Cortison Stim Test" Which I am figuring out from googling is a Cortisol Stim test, there isn't much info out there, but I did find this from the WiseGeek page,

A cortisol stimulation test, sometimes known as a synacthen test, is used to investigate the production of the hormone cortisol. Cortisol is normally released by the adrenal glands, located on top of the kidneys, in response to a hormone known as ACTH, which is produced by the pituitary gland in the brain. During a cortisol stimulation test, a synthetic copy of ACTH is given by injection, and cortisol levels in the blood are measured before and after the injection to see if they rise as expected. If low cortisol levels are found after the test, this could indicate a problem with the adrenal glands.

There are short and long versions of the cortisol stimulation test. In the short version, cortisol testing involves having a sample of blood taken from a vein to measure cortisol levels. Next, an injection of synthetic ACTH is given, into a muscle or vein. After waiting for around half an hour, a second blood sample is taken and cortisol levels are measured again to see if the adrenal glands responded normally to the injection. The longer version of the test is similar but, instead of taking just the second blood sample, a whole series of samples are taken to assess cortisol levels and adrenal gland function over 24 hours.

So I guess now she thinks I might have Addison's Disease? That's usually why this test is given from what I gather, which is in fact sort of the opposite of Cushing's.

The NIH page describes it as,
"Adrenal insufficiency is an endocrine—or hormonal—disorder that occurs when the adrenal glands do not produce enough of certain hormones. The adrenal glands are located just above the kidneys. Adrenal insufficiency can be primary or secondary."

The symptoms of adrenal insufficiency usually begin gradually. The most common symptoms are

• chronic, worsening fatigue
• muscle weakness
• loss of appetite
• weight loss

Other symptoms can include

• nausea
• vomiting
• diarrhea
• low blood pressure that falls further when standing, causing dizziness or fainting
• irritability and depression
• a craving for salty foods due to salt loss
• hypoglycemia, or low blood glucose
• headache
• sweating
• in women, irregular or absent menstrual periods

Some of those things are similar to Cushing's, except I definitely DO NOT have the weight loss.  I'm frustrated because I feel like the doctor is all over the place. I don't know what would lead her to think I might have Addison's, and how should I know? She's never bothered to call me back.

More tests.

Dr. S's medical assistant called me to let me know "Dr. S wants to run another test." Which test? She doesn't actually know, she mumbled through "It's a serum based test, and err uhh the lab will call you." When? "Sometime soon."

Blood Results/UFC Result

So, in all of this my doctor has proven to have horrible follow through. I found out she got the results last week, reviewed them earlier this week and never had anyone called. I called three times, the first was ignored, the second I got a massive apology and a promise from the receptionist that Dr S's MA would call me back, and the third time? I got a call back from not my doctor's MA who sort of explained the results, but just seemed confused and told me "She wants to do more work, and ordered some tests. I'm not sure which ones, someone will probably call you."

Defeated, I went by today and picked up the results (Oh, and they forgot one of them, and I had to go back and ask again) Anyhow, here they are:


The cortisol results from the dex-suppresant (take at 11pm, blood draw at 8am) were: 0.6 ug/dL LL (I suppressed, so it's a normal result)

 The 24-hr urine test provided these values:
 U Cotrisol Free 9.8 ug/d
 U Collection Volume: 1550 mls
 U Creatinine mg/24hr 992 mg/d
 U Creatinine mg/dL 64 mg/dL
 U Cotrisol Free raw Data 6.31 ug/L
 U Cortisol ug/gm Cr 9.86 ug/g

All seem mostly normal, but I think because I still had symptoms, and so many of the tests come up with false negatives, more tests were ordered (But, I still don't know which ones) I'm thinking of just skipping to the next step and trying to get in to see an endocrinologist, since my doctor in our appointment showed how unfamiliar she was with Cushing's (Not surprising, it is pretty rare)

But overall? Feeling pretty frustrated and discouraged about the lack of communication, and no real answers.

Irritated.

Finally called the doctor yesterday and stayed on the phone till I talked to an actual person (versus an message machine) They were apologetic and assured me the results would be ready tomorrow and there's a note to call me back on my file.

4pm today. Still no call back.

... And still waiting.

Still waiting... Put a call into my doctor to ask her for a timeframe of when I should get results back. Haven't heard back yet.

Below is some more information on Cortisol, that I found when poking around on the internet today.

Hydrocortisone 

(aka: Cortisone) 

Corticoid hormones balance stress response, energy flow, body temperature, water balance, and other essential processes. Two groups, the glucocorticoids and the mineralocorticoids, chemically control some of the most basic actions necessary to protect, nourish, and maintain the body. The gender-neutral corticoids guide these life-sustaining functions in both males and females.

You can go here to play with a 3D version of it. 

(this link also leads to wear the image& information came from)

Waiting Game.

Not surprising, but I didn't hear from the doctor today, which means no results to next week.

Just more waiting! Which,  I am absolutely horrible at.

Blood Draws.

My blood draw this morning seemed to match my grumpy mood. I woke up and didn't eat/drink anything in case it was a fasting draw (Since no one had told me) I got there, and apparently I was supposed to make an appointment, but no one had arranged one and I was given the impression I could just stop by (wrong) So they shipped me over to the hospital lab. But apparently the way the bloodwork was filed made it really confusing, and they also sent over my 24hrUrine lab order, which confused them even more. I finally explained to them what I needed to get done, this of course after I was told I "had" to pee, which tell that to someone who's already done their morning pee 30 minutes ago and had no liquid since the night before.

Luckily it all got sorted out, for the most part. All I really cared about was getting the Cortisol levels taken. I confronted my fear - that I'm still a really hard stick, my veins apparently don't like cooperating. Finally some on my left arm decided to play nice, and she was able to get it done.

And now, we wait.


(image at top from here)