And It's About Time There Was Some Support For Cushing's!
Been very ill for many years now. Has always come and gone and now since last April it is here to stay. I have all the symptoms, moon face, buffalo hump, weight gain, acne but also very dry skin, nausea, depression, hair places it should not grow, fatigue, and much more.
I am going for testing at OHSU Jan 13, 2005. I will finally have answers, I just know it.
I have now been told I have a suddle case of cushings and have a pituitary tumor on the right side displacing the pituitary to the left. I have been sick for many years but it has been constant for the past year. I have a tumor that seems to be cyclic. When it turns on I have major energy, when it turns off I get very achy, nausea, and very tired. I have many of the signs of cushings, red face, round belly, hirsutism, buffalo hump, acne, depression, anxiety, hypertension, unusual bruising, and highs and lows of energy.
I am being treated at OHSU. Much more testing to come.
I am now offically diagnosed. I am having pituitary surgery March 23, 2006.
All 3 pregnancy’s where complicated making me wonder if my tumor was around back then, maybe off most of the time.
1st pregnancy 1988 pre-term labor 27 week’s stopped but on bed rest and had pre-eclampsia at the end, daughter born 2 weeks early.
2nd pregnancy1991 pre-term labor again, stopped again, daughter born 2 weeks early.
3rd pregnancy 1994 pre-term labor again, stopped, gestational diabetes, son born 3 weeks early and I got toxemia after my son was born, was told this is very rare. I should have known RARE would be a word I would hear a lot in my future.
1997-1999 Depression and severe anxiety with panic attacks…Diagnosis of Fibromyalgia.
1999- First occurrence of unknown mystery illness. Hypertension, fatigue, flushing, swelling of face, hives, and much more that lasted several months.
2000-Weight 130 and went to 180 by 2005… sick on and off with mystery illness.
April 2004-Severe nausea and vomiting, extreme fatigue, weight gain, headaches, dizziness, hypertension, tachycardia, muscle and bone pain, malor rash, other rashes, IBS, occasional unexplained low grade fevers, anxiety and depression much worse, increased hersuitism, almost constant mouth sores, memory loss, cognitive difficulties, loss of coordination, syncope, excessive energy spurts, insomnia.
**Off work for 3 months April-June due to symptoms…Saw PCP, Gastroenterologist, Rheumatologist and Cardiologist… diagnosis Peptic ulcer/Chronis Gastritis and Chronic pain Syndrome and Tachycardia/Hypertension. Abdominal/Pelvic Cat scan done and fatty liver noted. High Cholesterol and Triglycerides discovered.
Nov-2004 My Psychiatrist was the first to mention Cushing’s or a Pheochromocytoma; he felt all my symptoms where due to endocrinology. He did not want to see me again until I was seen at OHSU. I have never seen him again due to insurance change. I really need to thank him.
Dec-2004 10# weight gain in 1 week with severe abdominal distention….another Cat scan done, lymph nodes around vena cava where enlarged.
Jan-2005 Went to OHSU for diagnosis….First saw an endocrinologist that was not experienced with Cushing’s; she felt my symptoms where not due to my endocrine system. Boy was she wrong.
Feb-2005 Went to the Pituitary Unit at OHSU and saw Dr.Ludlam, he believed that I had Cushing’s but we needed to prove it. MRI saw adenoma on right side displacing pituitary to the left. Lot’s of testing done. Did not prove it yet. Dr believes I am Cyclic.
April-2005 Peripheral vision test done by local optometrist, showed some peripheral loss in left eye.
May 2005-Lot’s more Cushing’s testing, PICC line in all month. Major dizziness, passed out and fell this month. Diagnosed with Type 2 Diabetes but cannot treat due to extreme highs and lows, trying to control glucose with diet. I have very high and low Cortisol days. I am very cyclic.
June/July 2005-Three TIA’s… left sided weakness and numbness. Saw Neurologist that sent me to Neurologist at OHSU. Found three new white matter lesions seen on my brain MRI.
August 2005-Had to leave my beloved job teaching Medical Assistants due to symptoms. I had one more TIA.
Sep-2005 Neurologist ran several tests and came to the conclusion that if in fact we could prove Cushing’s, all of my symptoms where due to this disease. I stopped all medications by choice.
Nov-2005 I went back for extensive testing at OHSU with Dr.Ludlam and sure enough the numbers started proving my case. Very high midnight serum Cortisol’s among other high tests.
Jan/Feb 2006-PICC line in and extensive Cushing’s testing done with CSS in Feb. CSS showed left sided gradient strongly. Cortisol numbers have proven my case, finally…. I had a midnight serum cortisol of 34.1 The Midnight Salivaries, Midnight Serum Cortisol’s, UFC’s and CSS positive for Cushing’s disease.
March 23, 2006 I finally had Pituitary surgery at OHSU, they found the tumor on the left side and removed the whole left half of my Pituitary gland. I was in the hospital for 6-days due to complications of Diabetes Insipitus and Adrenal Insuffiency.
April-2006 Seen in the ER 3 times. Hospitalized for 4 days again due to complications, Blood cultures showed infection. I am on very high doses of Hydrocortisone and also taking DDAVP for the Diabetes Insipitus.
April 24, 2006- I am finally getting better somewhat…..This has been one heck of a roller coaster ride. I am now on Hydrocortisone 40/40/30. I am told we won’t know if I am cured for 3-6 month’s. But….it’s looking pretty good for a CURE.
May 11, 2006-Weaned down to HC 30/20/20 This has been one heck of a ride.
June 5, 2006- Off HC, stimulated my Cortisol to 24 on the ACTH stim test.
August, 2006- Not Cured, testing again!!!
October 12, 2006- Second Pituitary surgery, did not work, most of my pituitary gland removed.
November 7, 2006- BLA scheduled...soon to be cured of Cushing's.
