I am desperate for answers!!

[KVMama]

Hello,
For 5 years- I have been told that I have a Rathkes Cyst,Pars cyst, a benign adenoma, TWO adenomas,one tumor and a partially empty sella!YES- I have been told all these things. I am searching for an answer as to what could be causing my issues. I have had lots of imaging- CT scans and MRIs in 2002, 2004 and 2007 and everything was reported as normal until an MRI in 2009). I'm 36.  I am 5'6 and 135 pounds.  I do have issues with fasting blood sugars so I do ketogenic diet to keep weight down- otherwise I would I gain weight easily. Anyway- My issues are severely debilitating daytime (afternoon) exhaustion!It occurs almost daily between the hours of noon and 5.I am a stay at him mom- I am unable to care for my kids.I do have random bouts of insomnia which do occur frequently. However, even on the nights where I do sleep all night I still wake up very tired! I have been told recently that I have Hypopituitarism- and possibly Sheehan's from a hemorrhage and severe drop in blood pressure last March from giving birth.  I have Growth Hormone Deficiency.  I have had Hashimoto's for almost 17 years and I do take a lot of thyroid meds to keep it stabilized- however I do now have Central Hypothyroidism (suppressed TSH). Recently, a midnight lab for cortisol came back at 7.3 ug/dL.I am now being worked up for Cyclic Cushings.  My midnight lab serums besides the 7.3 that were done randomly were: 1.5, 8.5, 2.3 and then two consecutive nights 6.6 and 4.1.I also completed two urine 10 hour tests (10pm-8am) that were high.  I did a few 24 hour tests that were normal. Additionally, My ACTH has never been higher than 11.I did have a normal CT of the adrenals.

I am not sure what to think right now-- but I know I cannot keep going on the way I have with the insane debilitating daytime exhaustion (even coffee and Adderall do nothing!)(and horrid insomnia) I am really hoping that you can guide me in a good direction. What are your thoughts?
Thank you so very much!
Dawn

[Daniel M Prevedello, MD]

Thank you all. I have been in contact with KVMama using private emails.
Thank you

[horselip]

The Pituitary Network Association publishes many resources for people with pituitary problems. They have compiled credible journal articles and other studies and have several papers re psychiatric issues and pituitary probs.
   As an aside to the PNA they had a campaign many years ago that was    
   something like sex is a nine letter word P I T U I T A R Y :) it's spokesperson
   was Paris Hilton. ha ha
So seriously I hope that someone can steer you to a good neuro-endo who can try to figure out your mess. I've got partially empty sella, had a Rathke's, might have a prolactinoma etc...so i feel for you.
Horsily

[Roadrunner1415]

All things aside, I think this is off-topic. This thread is intended to discuss Dawn's tumors. Perhaps another post should be opened for these other concerns.

[KVMama]

I would be very interested to know what studies you are referring to?

[rumpled]

It is her mom that has the borderline personality disorder.

There are papers on the emotional disorders and psychiatric issues surrounding pituitary disorders. You have to wonder if her mother has an underlying undiagnosed issue that is contributing to her personality issue. Most with pituitary issues are diagnosed with depression, anxiety or bipolar even.

[KVMama]

I'm really sorry that you are going through all that. As far as medical issues- you don't state any except Borderline Personality Disorder which is a psychiatric issue- NOT a pituitary issue.

[rumpled]

I am so sorry for your situation.

Sadly, most pit centers will not take you without at least some baseline testing showing you have a pituitary or hormonal sourced issue. Do you have copies of you past tests that show a hormonal imbalance? Some places do take on cases such as yours - and if you fit into a protocol and are sponsored by a doctor,  you can go to NIH for free.

I just don't know if you can be diagnosed in one go as a layman.

[hurdlelife7]

Hello,

I am 24. Im going through very very similar things except not all the tests done. I grew up in a broken home going back and forth eventually with my mom who is agood person over all but an unofficial diagnosis of Borderline Personality disorder. Not trying to tell you my life story but long story short I have been the parent/adult my whole life (give or take a small amount). I worked my way up in everything I did and never made a huge fuss about my random small issues because its not about me I went to school for teaching, coaching, pychology, wellness etc. Basically the last 10 yrs of increasingly worse health/wellness, my extremely perfectionist/humanistic/overachieving/lies from improper external sources, innate feel to save mother and didnt know ny better then to believe my family, collegeues etc when the rare occurrence its im right the hundreds in majority are wrong was instrumental for me reaching out.

But all the odds are against me. I had to drop out of college after 3 years, I have no money, absolutely no one believes me or actually reasons, and im about 95% debilitated.  If I could just get to one professionally/facility I could trust that they wouldnt quit until its answered id be able to breath. I quit a couple of my part time jobs...but cant all...but the working...insomnia...etc etc is all literally killing me.

I know I only have enough resources for 1 more dr visit. But I cant afford the misdiagnosis, miserableness all this brings. Any advice would be appreciated!

[rumpled]

I would find a pituitary center and a neuro-endo.  Go see one of the endo's associated with Dr P so he can yank whatever out!

[Roadrunner1415]

Dr. Prevedello,

Dawn is one of my friends I'm referring to you about her pituitary cyst/ adenoma. We discussed it and are wondering if it's causing her symptoms.

(She's just like me though--too sexy for Cushing's! HA!)

Please take good care!

Allison