Original Bio:
My story spands over 20 years and may sound familiar to many with Cushings who read this. The first clue came when I was diagnosed at 19 yrs old with a thyroid tumor. The tumor turned out to be both solid and cystic… Cushings is a cystic disease.
Shortly after my thyroid surgery, I developed difficulties with having regular menstrual cycle. I was diagnosed with PCOS… Cushings is a cystic disease.
In the following years, I went up and down with my weight until I finally was 80lbs over and unable to lose any; I slowly lost my hair; I developed stretch marks in my abdomen and chest area; and I developed hypertension, diabetes, and bad cholesterol problems at a young age. I went to my doctor for help and was told I just needed to lose weight.
My symptoms kept getting worse with time.
In July of 2003 changed jobs and was hired by Dr Johnny Delashaw, Neurosurgeon @OHSU. This was a day of blessings in more way than one. Accepting this position brought changes to my professional career and BIG changes to my life.
As part of my job, Dr Delashaw asked me to work with the Pituitary Diseases Clinic and Dr Bill Ludlam. I was more than happy and very enthusiastic as my professional background is in Internal Medicine.
In the beginning, I was interviewing patients to get them ready for surgery and I would also see them for their 2 week post-ops. Soon after that, I got involved in conducting endocrine testing with Dr Ludlam. This was my information gathering stage.
Not long after that, I came to the realization that I may have Cushings and the thought scared me. It took me a month or so to gather enough courage to talk to Dr Ludlam and discuss my fears. (If anyone out there knows Dr L, you know how funny my last statement is since he is the most kind and caring of doctors). He LISTENED to me and did not make me feel like a fraud. I felt legitimate.
We ran the tests and did the MRI and – BOOM – I had a very large pituitary tumor and high cortisol levels. I was surprised but then not surprised.
I have undergone 2 pituitary surgeries with the second one resulting in a complete hypophysectomy. Despite no pituitary, I continued to have symptoms along with high levels of ACTH and cortisol and eventually had a BLA in Sept 2004.
I struggled through withdrawals after my BLA but like a trooper, I returned to work within a month. Thank God I worked for Dr Delashaw who was very understanding. I was doing well for a few months but then in March 2005 I started to have symptoms again. Recent tests show ectopic cortisol production so now I’m waiting to go through the work-up to find the ectopic tissue.
I believe, as well as my doctors, that I’ve had Cushings for at least 20 years if not more. This disease has caused me to develop other conditions that increase my mortality and morbidity. Ironically, as I was going through Physician Assistant school… I jokingly (halfway) thought I had Cushings Disease as we studied it in class. I should have pursued it more but people with Cushings understand how this disease plays with one’s mind.
I am not sure when or if I will get over this disease, but I can tell you….
I am grateful… I am blessed… but most of all, I am hopeful…
Update December 12, 2013:
It’s been 10 years now since I had my “cure” for Cushings. I am one of those rare people who have had both a complete hypophysectomy and bilateral adrenalectomy. I have had my ups and downs over the years but can honestly say I am in a good place now both physically and mentally.
I just wanted people to know that I am back in the Pacific Northwest working at Swedish Neuroscience Institute with Dr. Johnny Delshaw again – the team is back! Please don’t hesitate to ask me questions. As a healthcare provider and patient, I can be honest with what to expect and I will do what I can to help you through it.
Many thanks to my family and friends who have put up with me and helped me while I rediscovered myself after Cushings. God Bless to all!
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Dec 16, 2013 @ 19:22:02
I as well will be forever grateful to Dr. Delashaw and Dr. Flesarui at OHSU. What a awesome group of professionals they are!
Jan 10, 2014 @ 00:36:00
Hello, I was up late reading through cushings websites because I strongly believe I have cushings I’m sure of it. I’m a 20 year old guy and I’ve been sick going on three years now. I’ve been to multiple doctors many have said I’m crazy I finally went to see dr.friedman he believes I have it and were in the process of doing testing. I’ve had one previous high test but the reason for this comment is I’ve got two mris and both are abnormal and friedman says he sees tumors but I need a surgeon to read and evaluate the mri and I’ve tried a few doctors and they haven’t got back in touch or say there’s nothing there. I was wondering if I could send my discs and reports to the neurosurgeon you work for some way? I just want to get back to being normal and feeling like myself please let me know if that would be possible thank you.
Feb 26, 2014 @ 23:52:28
Came across this while googling “Cushings”. I guess I am trying to pass time. I have had so many health issues for so many years. I have been misdiagnosed with everything from depression to fibromyalgia. After another bout with an ongoing infection (elevated white blood count) that antibiotics wouldnt help, suddenly having high blood pressure, retaining fluid, etc, my Dr referred me to an endocrinologist. Dr Horine mentioned Cushings, but in the same breath said he wasn’t too concerned, but wanted to get a 24 urine catch just in case. My cortisol level was over 3 times the high norm range. My ACTH level was on the high norm range, but not over. I was given the 1 mg Dex suppression test. Results wete normal. Another 24 hr urine test a month after the first revealed even higher cortisol. I did the 3 night swab, which also came back abnormal. Dr Horine called me after hours the day he got those results and informed me I had a pituitary tumor and ordered an MRI. He explained I would need surgery and needed the MRI to show how big and if tumor had spread. I’m confused. How does he know I have a tumor without the MRI? He muttered something about ACTH levels, but I was in shock and not really sure what was said. I do remember asking if he was 100%. He said he was in the high 90% sure. I had my MRI yesterday morning. Tomorrow at 11 am will be the 48 hours I was given as a time frame to get my results. I can’t sleep worse than my “normal” sleeping habits. We all know what that’s like. I must admit, I feel relieved to have a diagnosis. Im not sure how to post a new post on here, as I’m using my phone. If anyone wants to talk or whatever, feel free to email me tonya_n_ark@yahoo.com. Thanks for starting this!
Mar 10, 2014 @ 09:53:16
Could u please contact me via email? I am a nurse and got certified in ultrasound. My story sounds very much like yours and it started more than 20 years ago.the difference is I have yet to find anyone to help me while my health continues to get worse and now my son started showing symptoms around 3 or 4 years ago. I really could use some advice if you have the time. You have shown that there is a chance even if it has been years since this started to finally find the truth. Thank you for your bio and giving those of us who have suffered for so long hope.
Mar 20, 2014 @ 23:08:23
Hey Margaret, I came across this after doing a Google search of Dr. Delashaw (I was bored lol). I’m glad to hear you are doing well and working with Dr. Delashaw again. I missed seeing you in clinic! If you see this, please tell Dr. Delashaw hi for me.
Jun 07, 2014 @ 14:34:01
Hi Margaret,
I am not sure if you remember me at OHSU. I had my pit surgeries the same days as you and lost whole pituitary and then had adrenalectomy. I now have diabetes, NASH and heart failure of unknown reason. I have very low energy and as the years go by my body is very tired and it takes me a long time to recover from procedures and things. Also I take a diuretic for heart failure then I get dry and have a crisis.
I would love to get in touch with you and see how you are coping with no pit or adrenals. Also would like to know if you have other health problems now and how you cope. I feel very alone on this journey and the docs are not always helpful. Who do you see in Washington for your endo? I desparately need a new one. Flesireau will not see me.
Nov 07, 2014 @ 08:25:49
After u have gone threw all of this was you able to lose the weight u gained?? I just got diagnosed with cushings n have to have pituitary surgery!! I’m scared n freaking out n have so many questions??