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Pattie's Story...

Hi there,

I have been recently diagnosed (October 2001) with Cushing's Disease. My pituitary is at fault and it is not drug-induced.

I have been ill with the symptoms for over 2 years and had been put off by the doctors as just another anxious woman (40+).

In September I lost a dear friend who had the "head in the sand" attitude about her health. Unfortunately, it was too late when the diagnosis came in. I refused to let this illness get me so I pushed back.

I saw an Internal Medicine specialist in October and she had me diagnosed (literally), that appointment. She ordered the 24 hour Urine Test and my cortisol level showed to be 3.5 times the norm.

Since then, I have been under the care of an Endocrinologist and have had all the tests (Dexamethasone (2 types)/VVDPA Test with a drug called ACTHREL (Corticoretin Ovine Triflutate) which apparently needs Health Canada clearance).

To add to my woes, I had a kidney stone attack last week and after 18 hours in two separate hospitals, I found out that the CT scan showed at least 3 more waiting.

I have just had a visit with my endo and we are now scheduling the Petrosal Sinus Sampling Test. He wants to be absolutely certain that we will be doing the Transsphenoidal surgery for the right reasons i.e.: no ectopic sites. The adrenals have been ruled out and MRI showed a growth on the pituitary which is slightly bulging.

I'm a little apprehensive about this test but I also don't want pit surgery and not be "cured".

I am so glad that I found this site and it was with the great help of the people on an Addison's patient forum. I know that Cushing's is rare and now I can talk to others that are undergoing the same thing.

I am excited to be part of this group and any help you can give me will be forever remembered and appreciated.

I am currently having trouble trying to keep my blood pressure in check (200+/100+) and have been on Diltiazam since Nov. I was previously on Altace but my endo has now prescribed Triamterene, which apparently suppresses the cortisol to some extent to reduce my bp.

My Cushing's is not drug-induced and there is no family history of this. I am at a loss as to why it has happened to me.

I apologize if this is lengthy but this is new to me. Thank you for listening.