Monday, June 7, 2010

Back in Business!

Blogspot is finally up and running again!! Yay!!

I started my first 24 hour UFC this morning to test the levels of cortisol. UFC stands for Urinary Free Cortisol. It measures those not bound to any other proteins, which would be free to wreak havoc on a poor souls body!

Cortisol is a steroid hormone produced by the adrenal glands that has many life altering roles in the body. Without it would be imminent death. Too much of it, however, causes just as many physical problems and can also eventually lead to death from some of it's many "symptoms". I refer to symptoms in such a manner because in the medical world those very symptoms are also stand alone diagnoses, such as diabetes, hypertension, obesity and many more. You put all of these together and you just have another fat person, right? Not always. As is the case with Cushing's Disease/Syndrome.

The pituitary gland is the master gland. It produces many of the hormones, or prerequisites to the hormones that sustain us. It's location: straight back behind the eyes nestled up next to the brain.

The tiniest of tumors in the pituitary gland can produce to much of the prerequisite ACTH. This hormone signals the adrenal glands (located on the top of each kidney) to release the appropriate amounts of cortisol to help battle stress, illnesses, control blood sugar, metabolism and gastric secretions for digestion, regulate electrolytes as well as many other affects in the body.

Cushing's Disease results from a tumor in the pituitary gland or an ectopic tumor (tumor found elsewhere as in the lungs) causing to much ACTH which in turn causes to much cortisol release from the adrenal glands.
Cushing's Syndrome results from a tumor or other defect of the adrenal glands themselves causing release of to much cortisol.
Also Hypercortisolism can come in the form of long term steroid use like that in people with asthma or Lupus.

Unfortunately diagnosing Cushing's is not often cut and dry and requires numerous tests of blood, urine and saliva. It seems cortisol is a hormone of habit and has a very specific pattern called the Circadian Rhythm. With this rhythm the cortisol levels will be most in the morning, 8 am, with a half decrease by 4 pm and should be close to zero by midnight when the body is resting. With Cushing's people lose this rhythm and levels do not always decrease to the "norms". A person may have multiple urine tests turn out normal and have several midnight tests turn out abnormal. The other issue is that with Cyclical Cushing's the person experiences excess in cortisol levels in cycles. They may go days between cycles or weeks or even months and if it is not caught at just the right time during the cycle the lab work will appear normal, while the patient suffers quietly.

This post is getting incredibly long isn't it? I will go into more details at a later date.

So the big question: What does it look/feel like?
Symptoms commonly associated with Cushing's are:

-obesity primarily located at the abdomen
-a buffalo hump (fatty hump) on the back of the neck
-rounding of the face referred to as Moonface
-fat distributed around the neck/under the chin
-striae (stretchmarks) that are often pink, red or purple
-reddened face

-thinning hair, oily or dry hair/skin
-hirsuitism (excess hair on face, arms, legs, chest)
-insomnia, depression, anxiety
-high blood sugar, high blood pressure
-heart arrhythmia
-flank pain, joint and muscle pain
-proximal muscle weakness (larger muscles closer to the trunk like the thighs, upper arms, abdominal)
-infections/poor wound healing
-brown discolorations of the skin (with an excess in ACTH)
-blurry/double vision and pain behind the eyes (mostly with pituitary tumors)
-menstrual irregularities
-reduced libido...sorry fella...

Pictures are worth a thousand words, but in this case are way to embarrassing to post, so if you are morbidly curious beyond the drawings, just google image or bing image Cushing's Disease and you will see examples of many of the symptoms listed. When I am feeling a little more dangerous I might post some examples of how I fit that mold. But, not feeling to particularly dangerous tonight... =)

One of the reasons diagnosis can be so difficult is that not every person will experience all of the symptoms. With so many of the symptoms being caused by other diseases or just plain unhealthy lifestyles, many suffer at the hands of Cushing's for years without diagnosis or treatment.

Unfortunately people suffer great embarrassment or shame at the hands of physicians when they are told over and over that "it's all in their head" or they just need to lose weight. The problem there is that attempts at weight loss are minimally affective or a total failure, not on the part of the person, but as a result of the excess cortisol. How ironic that it really is "in their heads" the docs just aren't listening. The elusive pituitary tumor typically does not show itself on an MRI. It takes a more specific pituitary MRI or IPSS sampling (Inferior Petrosal Sinus Sampling).

There is so much information and so little time to bore you with it, but that is the starters. If my lab results come back abnormal, or maybe even if they don't, I will do another post on treatment and recovery. It seems from all I have read about other's experiences that surgery and recovery are just as brutal as getting a diagnosis. The cortisol has bathed the body for so long that coming off of such high levels can be likened to an addict going through withdraws.

My most wonderful doctor is in the process of referring me to a specialist here in Dallas that deals primarily with pituitary disorders and Cushing's, so I am hopeful. God is my ultimate Physician and whichever way He sends me, I will take it gracefully (trying not to groan so loudly...) and I will use it to help whomever and however I can.

And with that, I need to tinkle and the big orange jug awaits... TMI I know, sorry!

A disclaimer reminder: I am not a doctor!! Nor am I an expert in any manner regarding any medical information I give. I am simply a person struggling to regain my health back. Please seek the advice of a medical doctor and do not attempt self-diagnosis based on my entries. I research this information in the same way anyone could. Once again: To err is human, and well I am very much human. This is purely for information sake on my daily struggles.

1 comment:

  1. Hi Trisha. I found this post today, and I am wondering if you were ever diagnosed with Cushing's? If I can help in any way, please find me over on my blog,

    Hope you are feeling much better these days.