Posted by H.H. on June 1, 2001, at 22:05:43
In reply to Re: Jennifer - endocrine test » Noa, posted by Jennifer on July 2, 2000, at 4:55:23
Jennifer,
I just found this site and am dealing with Cushing's syndrome/disease right now. I was hoping you'd be able to tell me what has happened with your scenario within the last 12 months? I am scheduled for pituitary surgery in about a week and a half. They are going ahead with surgery because they feel confident that all of my diagnostic tests were consistent in pointing to a pituitary tumor as the source. However, my MRI did not reveal said tumor. I was told by my Doctors that in 50% or more cases, the tumor doesn't show up on the MRI. I was wondering if you've had resolution to your Cushing's? Did you have surgery? Anything you can tell me would help a great deal.H.H.
> Noa,
> Seems like we're going down the same path. I'm going to check out the web site Scott suggested (thanks Scott!). I've had time to research all of this while they were narrowing things down. The insulin resistance came up negative for me, as well as PCOS (polycystic ovarian syndrome), thyroid was negative, etc. These urine tests are for Cushing's...it seems the most likely at this point. The ortho threw in some tests for arthritis and immune diseases, but most of that was ruled out long ago.
> Hypercortisol causes many "not fun" things, of which you may have been experiencing. I have had a large weight gain this last year...purple straie (stripes) on my abdomen - not from weight gain...thin ankles and wrists...back, rib, and joint pain, bone fractures, swelling of the feet, thick toenails, vision changes, difficulty sleeping, acne, etc, etc. It seems that all of these are due to the high cortisol.
> Now please tell me that the lab gave you a "hat" to urinate in! If they didn't, I know why things are a mess! The "hat" is a small bucket with a rim that goes under the toilet seat...you can pour the urine from the rim, right into the jug. As far as keeping it in the fridge, you don't have to. I keep a little bucket in the bathroom and put ice in the bottom. This lasts 12 hours, so I refill it before bed. The next day I put ice in a plastic bag, put the jug on top, and take it in. I'm getting good at this now, except with the last one the lab didn't pick it up in time, so they had to freeze it, and I won't get the results for another week. I have 2 more to go as far as I know. The endo said I may have to do up to 8! Guess there is such a thing as "cyclic hypercortisolism", which we are checking on also. I'm sure I won't have to do that many if my bone scan or density comes up with funky results. That should be enough to warrant the scan to find the tumor.
> So your doc has not explained much of this? Hypercortisol can be caused by 4 things. #1 is stress, depression, anxiety, panic attacks - all raise your cortisol level. #2 is the most common - a pituitary tumor, usually benign, that produces too much ACTH which is the hormone that tells the adrenal glands to make cortisol. #3 is an adrenal tumor that makes too much cortisol, and #4 is a cancerous tumor somewhere else in the body that is secreting ACTH and so the adrenals make cortisol. The most common site of cancers like this is in the lungs. Usually a small oat cell cancer. Diagnosis of Cushing's needs to be made based on lab tests...not on looking for a tumor. 50% of the population has a non-functioning tumor of the adrenal or pituitary gland. Nobody wants to go through surgery to remove a benign, non-secreting tumor! Once the diagnosis has been made via lab tests, and physical symptoms, then you do a scan to locate the lesion. Adrenal and pituitary tumors need to be removed. They remove the pituitary tumor by going through your sinuses in the back of your nose. Some people have sinus problems following surgery. If they don't take off enough, the symptoms may lessen, but remain. If they take off too much, you can go the opposite direction and develop Addison's disease (hypocortisolism). The only time I have ever seen this was in a cat! The best thing you can do is to find the very best surgeon that specializes in pituitary surgeries.
> Hope some of this info helps. Keep me posted on your progress. I've felt so crappy, and been so busy with all the medical stuff, that I only check in here every few days. Don't worry if I don't reply right away...I'm just off doing medical tests! Love Jennifer
poster:H.H.
thread:38608
URL: http://www.dr-bob.org/babble/20010530/msgs/65118.html