Home

Margaret D (MargaretD), Pituitary Bio

7 Comments

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!

HOME | Contents | Adrenal Crisis! | Abbreviations | Glossary | Forums | Donate | Bios | Add Your Bio

Sonja D (Kiwi), Ectopic Bio

1 Comment

Diagnosed in 2003 with a Carcinoid Lung Tumour which was surgically removed in May 2003.

After a number of years of “not feeling myself” and consulting with the family doctor, it wasn’t until I showed him hair growth on my face and asked him if we had completed all and every test possible related to hormones.

Two tests to do; one was cortisol and the other testesterone.  Results were in the next day, showing cortisol levels four times the normal range.  Bingo!  it was like I had won the lottery.

A flurry of additional tests were conducted, a visit to an Internal Medicine Specialist and finally a referral to the Endocrinologists at the University Hospital.  On meeting the endocrinologist her first words were: “It’s very nice to meet you.  I’m very excited you were able to come in today’.  Is she nuts, I thought.  Since when is a doctor “excited” to meet a patient?  This was the beginning of a most wonderful patient/doctor relationship and it continues today along with the full team of endocrins at this hospital.

It was confirmed I had Ectopic Cushing’s Syndrome in February 2011.  My health deteriorated rapidly with no sign of any tumour which was likely the cause of the extremely elevated ACTH and Cortisol levels.   A Bilateral Adrenalectomy was performed in May 2011 and in November 2011 the elusive lung tumour was sighted in the same location as the one removed in 2003.  It has not grown in the last six months so it is being left “undisturbed” at this stage.

%d bloggers like this: