Home

Kelly Jo, Pituitary Bio

3 Comments

I was first diagnosed with Cushings Disease in the fall of 2007 after having broke my hip (just by stumping my toe – no fall) and then deleveloping a PE which landed me in the ICU for 5 days.  And I thank God that these things happend to me because I was rushed to Parkland / UTSW and it was there that the dr started questioning why a 39 year old woman would break her hip in the manner that I did.  No other dr questioned this (I had even broked 2 ribs and was told that I must have been laying on the couch funny – WHAT?!?!).

I had been told for years by my dr that I was just obese and needed to diet – IT WAS EASY, he said.  (This is the same dr after he found out was I was diagnosed with said – I could have treated you for that Endo is my speciality.  Again – WHAT?!?!?)

It took the drs at UTSW about 5 / 10 minutes to look at me and say “We think you have Cushings”.  I had never heard of this before and can remember just asking can it be cured?  And being told about 70 to 80% of the time.

They still had to test me and that took a few months.  They all came back with results that I had Cushings and they found a tumor on my pituitary.

I had to wait a few months before I could have surgery due to I was on blood thinner to treat my PE / blood clots.  I had my first surgery in February 2008.  Drs said it went well and I should start seeing things go back to normal and that I should also start feeling better.  Well I never really did and it came back and I had another surgery January 2011.

And now they think it’s back yet again!  I’m mentally and physically done with this disease!  I just want them to take everything out of me that would make this horrible disease stay away!  I’m very emotional right now and feel completely lost and alone.

I have a great husband (can’t tell you how great he has been) and family that has stood by me the entire time and will always be there for me but as I’m sure a lot of you know sometimes you just want to ‘not be’.

With this go around I’m really struggling.  The first time I was almost cheerful cause I finaly knew why I felt so bad and worthless (I had had this disease for probably 10 years before I was diagnosed).  The second time, I was a little more bummed about it and this time I’m more depressed than I’ve ever been.  I know I’ll get thru this (again) but I’m tired of having to deal with it.

And I know I’m rambling but I’m feeling the need to let this all out.  I could go on and on but I think most of you know how I feel.

Thanks for having this site and for allowing me a place to go to vent.

Good luck to us all!

Kelly Jo

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

Marian (MaidM), Adrenal Bio

Leave a comment

Hi!

I have provided a timeline of my Cushing’s related tests and symptoms.

Symptoms since 1994

Diagonsed: August 2012

Surgery:  August 2012

 

Other Key Dates/Symptoms:

1993-2009:  NIght sweats, heart palpitations, difficult losing weight, anxiety

 

2010:

+Kaiser Acupuncturist  checked DHEA levels.  Lowest she had ever seen.

+Referred to Kaiser endocrinologist (Dr. Lee)

+ACTH Very low

+Cortisol moderately high

+Abdomen CT showed 2 cm growth (Mis-read as possible cancer by radiologist)

+MRI showed possible small brain adenoma

+Referred to NIH

+Labs normal

+Reviewed MRI/ CT.  CT showed 2 cm adenoma (benign) and no brain adenoma.  (They said Kaiser overead the MRI and were sure about the CT not showing any cancerous characteristics)

+Initial diagnosis: Psuedo Cushing’s and revised to Cyclical Cushings

 

2012

+Increased symptoms.  Weight gain, hump, fluid retention, moon face, fatigue, irritability

+NIH follow up showed high cortisol (confirmed 2X), low DHEA, low ACTH

+Suppression test confirmed Cushing’s Syndrome

+Bone scan showed 25% bone density loss in 3 years.

+Diagnosis: “Sub Clinical” Cushing’s Syndrome (borderline…I don’t  “look” like Cushiing’s unless you compare before and after photos.

+Repeat CT confirmed benign 2 cm adenoma (no growth)

+Surgery scheduled for Aug 27, 2012.  Re-scheduled for Aug 29, 2012.

 

Hope this helps!

Feel free to contact me,

MaidM

%d bloggers like this: