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Larry S' Story...

I have been diagnosed, as of about mid August (2004), with Cushing's (cortisol level has been tested in range of 287 to 311) and am currently in the testing process where they are looking for sure at what is causing it.

Tentatively it has been identified as "adrenal related" as (A) tests are not coming back that would confirm it being pituitary and (B) a CT Scan has revealed a 2.1 x 1.8 cm lesion on left adrenal gland. I believe that my endo is disappointed in that he wanted it to be pituitary!

I think that my Cushing's started not too long ago as I do not possess many of the more "typical symptoms"... or I do but much more mildly than "normal" (for Cushing's). For example, the visible signs are very minimal.... some weight gain, some fuller face (but definitely not "moon faced"), NO "buffalo hump", very, very minor "purple stretch marks", etc..... Also, have a very slight increase in blood sugar levels (levels were in the low 90s back around 1996 - 1998 time frame... since June have gone to 105 and then to 117). Blood pressure levels are actually good to very good, etc., etc.

In fact, my "chart" of Cushing's symptoms looks like this:

Upper body obesity (Yes, but not extreme)
Round face (Mild, very slightly)
Increased fat around neck (No)
Buffalo Hump (No)
Thinning arms and legs (Mild - just barely starting)
Fragile and thin skin (Not that has been noticed)
Stretch marks on abdomen, thighs, buttocks, arms, and breasts (very light on lower abdomen/groin areas)
Bone and muscle weakness (bone density is unknown, muscle weakness is mild - just starting)
Severe fatigue (General fatigue with sometimes severe fatigue)
High blood pressure (No - blood pressure generally very good, sometimes actually low)
High blood sugar (N0 - though recent tests have shown levels slowly climbing, still clearly "okay" at 117, up from 105 in June)
Irritability and anxiety (Anxiety - Yes, very strong = see list below)
Reduced sex drive (Yes, extreme reduction in libido / erectile dysfunction problems - even with TRT)

But I have had very, very strong anxiety - prior to getting on some antianxiety medication (antivan) I had pretty much multiple daily panic attacks.

I also have a number of PHYSICAL symptoms that seem to be more related to (clinical) Anxiety than directly to Cushing's.

Things like the following:

Racing Heart (Y - O)
Chest Pain (Y - O)
Palpitations (N)
Difficulty breathing (Y - O)
Headaches (Y - O)
Sweats (Y - O)
Bowel Troubles (Y - sluggish bowels)
Nausea (Y - O)
General Fatigue (Y - sometimes very strong fatugue)
Dizziness (Y - O)
Insomnia (Y - Very strong insomnia. ambien no longer works, on restoril)
Butterflies in the Stomach (Y - O)
Difficulty swallowing (Y - O)
Shaking or shivering (Y - O)
Cold or Cold Intolerance (Y - very intolerant of cold or even cooler temperatures)
Neck & shoulder pain & numbness in face or head (Y - O)
Indigestion, heartburn, constipation and diarrhea (Y - O... constipation)
Symptoms of urinary tract infection (Y - Gets better or worse depending on levels of anxiety!)
Skin rashes and/or flushing / itching / prickly feelings (Y - O)
Strong Tingling / Electric shock feeling anywhere in the body (Y, Frequently; probably 75 - 80% of time)
Creeping or pins and needles sensations in/on the skin (Y - Overall 50% of the time - hands/feet like 80-90%)
Symptoms like 'flu' (Y - O)
Distorted vision (Y - O)
Disturbed hearing - Tinnitus (Y - very strong about 75% of the time)
Hormone problems (Y)
Dramatic decrease or increase in sexual feelings (Y - Decrease of sexual feelings/libido - even on TRT)
Headaches & feelings of having a tight band around head (Y - O)
Pain in the face or jaw that resembles a toothache (N)
Agoraphobia (Y - O)
Constant fear or impending doom (Y, very strong sometimes)
Increased depression & suicidal feelings (Y - Milder depression levels)
Hallucinations (N)
Sudden Panic Attacks (Y - O, especially before going on antivan medication)
Increased feelings of sadness and grief (Y - very strong sometimes, almost overwhelming)
Irritability (N)
Social Nervousness (Y - O)
Hyperactivity (N)
Feelings Like You Are Going Mad Or Losing Control (Y - O, but very strong sometimes)
Feeling Alone And Out Of Place (Y - O, but also very strong sometimes)
Believing That There Is No Hope Of Normality (Y - O)
Increased sensitivity to light, sound, touch, and smell (Y - O)
Social Phobia (Y - O)
Disturbing Dreams And Thoughts (Y - O)
Derealisation and depersonalisation (N)
In addition have extremely cold feet/lower legs probably 75-80 % of the time

BTW, N = "No", Y = "Yes", Y - O = "Yes, Occasionally"

This is so weird, but as you can see, I have many more physical "anxiety symptoms" than I do actual Cushing's symptoms (or at least strong Cushing's symptoms). I have been told that the excessive cortisol levels of Cushing's actually creates anxiety, that it isn't simply a matter of one being anxious because they have this concern, but that there's an actual PHYSICAL CAUSE of anxiety by the Cushings.

Is that true?

I have read numerous stories of individuals with Cushings who have depression, but not much about individuals who have clinical anxiety that is directly attributed to Cushings and the high levels of cortisol.

Also I have developed (just a couple of months ago) very strong "ringing in the ears". My regular doctor shrugs it off as "just getting older". My local endocrinologist (who is doing the current testing) says that he's never heard of this being a symptom of Cushing's - but I tend to believe that I might very well be his first actual Cushing's case! I do note that this is - once again - an anxiety related symptom.

Well, as it turns out - after much advanced testing - my original dx was incorrect (it was based primarily on the concurrent fact that I had very high cortisol levels - at that time almost six times the max - and a tumor was found in the left adrenal gland).

Turns out that the adrenal gland was not only benign, but was also "biologically inactive", and that I do not have regular Cushings of any variety, but instead have Pseudo Cushings.

That said, I would also like to mention that I have been very disappointed at the lack of information that your organization provides about Pseudo Cushing's. Pseudo Cushing's (what an unfortunate choice of names) is every bit as much of a Cushing's disorder as is Cushing's Disease and Cushing's Syndrome. It seems that highly elevated cortisol that is caused by a tumor or a cancer is given much consideration but that highly elevated cortisol caused by anything else is considered an "orphan child" that isn't discussed very much (and yet there are likely as many - if not more - Pseudo Cushing's patients than there are "regular" Cushing's patients.

One of the most difficult forms of Pseudo Cushing's is that caused by severe depression (and / or anxiety) and yet there are some very exciting clinical trials (both already done and going on) - IN THE PSYCHIATRIC FIELD - as relates to the short-term use (4 - 7 days) of RU486 to successfully re-set the HPA Axis of severely depressed persons who have clinically high levels of cortisol (note that I just described what??? yes, that describes Pseudo Cushing's patients!). The RU486 therapy was re-setting the HPA Axis for those individuals and both lowering their cortisol and curing their depression. Yet most Endocrinologists who have diagnosed patients as being "Pseudo Cushings" know nothing about these trials and simply wash their hands of their Pseudo Cushings patients! And yet these same Endos could already be prescribing the RU486 therapy to their Pseudo Cushing's patients!

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