CindyRPT

Sounds like a winner. I'll keep ya'll posted! Ha! Cindy 1 Robin 0

I'll throw my hat in here. I'm supposed to have sinus surgery sometime soon, since a CSF leak was ruled out. Yeah!. But once I get all over that, I'd be happy to do an interview if you'd have me. Do you mind a Kentucky southern accent? I like to say "ya'll" a lot. I'll keep you updated when I have my surgery scheduled & will be ready to go post-op. Great program you have going here. It's so wonderful to hear everyone's unique story! Hugs, Cindy

Nice find, girl. Very easy to read. I believe I'll print this one out & have my Mom read this since she has been wanting something to read about Cushing's and everything was so complicated, explaining the HPA axis and such... I knew it would be total Greek to her. Thanks for sharing your find. Hugs, Cindy P.S. I do have to agree, the 80% is a bit too optimistic!

Wow! I am so proud of you! You did a fantastic job explaining Cushing's & I loved the visuals they used to explain how Cushing's work. That was a top notch news story!! I'm sure that there were some folks watching and called their docs the next day! You look beautiful and so happy. Thanks for spreading the word!! Hugs, Cindy P.S. Betcha' gave your Dad a big smooch for helping you figure out what was possibly wrong with you. Kudos to Dad!!!

I have been wondering about her and how she has been. Bless her heart. She endured so much pain for so long, but she did help raise awareness about pituitary tumors and was able to make a good living at it. May she now rest in peace.

Yep, I tried Phen-Fen too back in 1996. Loved the stuff. I was absolutely amazed how easy it was to lose weight on it. I NEVER had an appetite. At that time I didn't have much to lose so I was on it only for 3 months. I actually got pregnant and had to stop anyway. (Was feeling pretty frisky after regaining my figure!) It worried me about the health of my child, but he was OK thankfully. After I had my son, I wanted to get back on it to just lose the baby weight. Right about that time was when they discovered it caused PPH, so I never used it again. So sad to hear a story about someone who not only has Cushing's, but has also developed PPH due to these meds. Being on it for 5 years seems insane! It does sound to me that she was dealing with Cushing's weight gain & the doc was attempting to battle it with Phen-Fen. But as we all know, it's a losing battle against Cushie weight gain! Thanks for sharing this interesting story Mary. Hugs, Cindy

Robin, I found your article fascinating! Of course having hyperplasia, it is a concern of mine. I did find it particularly interesting that estrogen excess can be a cause of hyperplasia, and especially the fact that it can sometimes be reversed! Wow! I started looking up some info on path reports because some of the terminology I am not familiar with. (I was just looking for the words "positive for ACTH staining") So I looked up some histology info. It shows some great slides of what normal tissue looks like, vs hyperplasia (expanded acini) and adnenoma tissue. Also Violet, I found some info on Crooke's cells. Rare & related to cyclical Cushing's. Interesting. Check it out. Hugs, Cindy P.S. Hope you feel better soon Robin. Thanks for sharing this info. Even when you don't feel well, you always put yourself out there to help us. You're a gem! HYPERPLASIA Hyperplasia is an increase in the number of cells of an organ or tissue in response to a stimulus. Any cell population within the pituitary gland can undergo hyperplasia. This process can be physiological or pathological (3;95;96) and when prolonged may progress to adenoma formation (97-102). Somatotroph hyperplasia is seen in patients with ectopic production of GH-releasing hormone (GRH) by pheochromocytomas, endocrine tumors of lung, pancreas or other elements of the dispersed endocrine system (97;103;104). Rarely, it may be associated with a gangliocytoma of the hypothalamus (105). Mammosomatotroph hyperplasia is the characteristic pituitary lesion in McCune-Albright syndrome (106;107); rarely, it may be due to GRH excess or it may be idiopathic (108). Lactotroph hyperplasia is physiologic during pregnancy or other conditions of estrogen excess, but pathological idiopathic lactotroph hyperplasia is a rare cause of hyperprolactinemia (109;110). Corticotroph hyperplasia is a cause of Cushing's disease that may be associated with a corticotroph adenoma (98-100). In rare patients, it is attributed to ectopic or eutopic excess of corticotropin-releasing hormone (CRH). It is also physiological in patients with untreated Addison's disease. Thyrotroph hyperplasia develops in patients with prolonged primary hypothyroidism(111-113). Gonadotroph hyperplasia is seen in patients with prolonged primary hypogonadism (101;102). Radiologic evaluation of patents with hyperplasia usually reveals diffuse sellar enlargement without enhancing normal tissue on contrast administration. Hyperplasia is usually reversible if the underlying condition is appropriately treated. However, in patients with idiopathic hyperplasia, the underlying stimulus is not known. Patients with lactotroph hyperplasia can be treated with dopaminergic agonists. Those with Cushing's syndrome may require total hypophysectomy to achieve clinical control. The key to distinguishing adenohypophysial hyperplasia from adenoma lies in the reticulin stain (Figure 14). Hyperplasia is characterized by expanded acini with an intact reticulin framework whereas adenomas have breakdown of the reticulin fiber network. Immunohistochemistry shows predominance of the hyperplastic cell type with other hormone-containing cells interspersed. Ultrastructural examination is not a reliable method to distinguish hyperplasia from adenoma, however, it was the method used to describe the cell enlargement that defines "thyroidectomy" cells (Figure 15) in patients with primary hypothyroidism, and "gonadectomy" cells in patients with primary hypogonadism. In both situations, the target cells develop abundant vacuolated cytoplasm that is occupied almost entirely by dilated rough endoplasmic reticulum with secretory material. Figure 14. The reticulin stain is the most valuable tool to distinguish normal acinar architecture (a) from the expanded acini of hyperplasia ( and to confirm total breakdown of the reticulin fiber network in adenomas ©. Crooke's cell adenomas are rare tumors that exhibit Crooke's hyaline change (142;143). Usually, Crooke's hyalinization is restricted to nontumorous corticotrophs, but rarely this marker of feedback suppression by glucocorticoids is seen in adenomas. These tumors can be associated with Cushing's disease, but it is generally an unusual form of the disease, such as cyclical Cushing's. The tumor cells can exhibit marked cytologic and nuclear atypia (Figure 21). The perinuclear ring of pale hyaline material represents the accumulation of low molecular weight cytokeratin filaments that are intermediate filaments on electron microscopy (144). The cells exhibit a rim of peripheral positivity when stained with PAS, and this is due to immunohistochemically detectable ACTH in secretory granules located either at the periphery of the cell or in the perinuclear region.

Oh yeah! I love my Vitamin D!!! After I started taking it, I could tell a marked difference not only in my physical but also my mental well being!!

Thanks for all the kind & uplifting messages!! I loved reading them all! I was so excited about it, I just had to share. When I e-mailed Dr McC back to telll him that I would be happy to help him with his report, I LITERALLY had goose bumps! Collaberating with the great Dr McC is definitely a gift amongst all the trials & tribulations I have (and continue to) deal with. If it weren't for this board & all of you guys helping me through this process, I wouldn't have ever known about Dr McC. And for that, I thank you. And it is my hope that with each one of us who have our cases published, it will help another Cushie get diagnosed & treated sooner. If a person has strange symtpoms like I did (ptosis, vertical diplopia, IH with hyperplasia, etc...) then maybe this case study can clarify the etiology. Being a cyclic Cushie complicated everything. I had the symptoms, then they would go away, then they would come back. Dr McC has figured this all out now and I'm looking forward to seeing a case study focusing on the rise & fall of symptoms and associated morbidities with a person who has cyclic Cushing's. I think cyclic Cushing's is still misunderstood and many doctors need to be educated about it. It seems to me that there are many of us that are cyclic. And I think about all those that went so long before they got the treatment they needed after going from doctor to doctor. You know, I cried when I read about Natalie's death. I didn't know Natalie personally, but it really hit home (and hard!) We had our BLA surgeries only 3 days apart and as I lay my head down to sleep last night, I wondered...."Will I wake up?" I was having a bad day yesterday & had to take extra hyro. Could this happen to me? It saddened me so, to hear of a young, vibrant, loving individual....a wife, a mother, and a friend to so many, lose her battle to this dreaded disease. With each one of us that have been diagnosed, maybe we should talk to our doctors & see if they would like to publish a case study. The more reputable studies that are out there, the more resources there will be for patients & doctors. Maybe we shoud start a grass roots effort to get more publications out there about us. We are all zebras here & some are "uber" zebras!! It's just been something on my mind that I had to share. Thanks for listening. Rest in peace dear Natalie. Hugs, Cindy

Dr McC is the most amazing doctor on earth! I sent him an e-mail and within 10 minutes , he e-mailed me back! Unbelievable! He gave me some great advice regarding my case and he he told me that he wants to publish a case study about me in one of the NeuroSurgical Journals! Wow, I'm going to be published!! Hey SusanM & Melanie, I get to be like you guys!! I guess it is one perk we get for going through all this carp, huh! Here's my e-mail I sent him & just below is Dr. McC's reply. Here's his reply.....

Good ol' Harvey has made such a difference in my life, that's for sure! I am so grateful. I have tried to educate my friends & family about this disease as much as I can, but what really amazes me is how many people in the medical field do not know about Cushing's. Over the past year, I have been to many different doctors, and have been asked "What is Cushing's". I had blood drawn just last week & the phlebotomist asked "What is Cushing's?". I had a bone density test, the tech was asking me what Cushing's was. I had a CT scan last week, the X-Ray technician asked "What is Cushing's?". I even had a nurse ask me "What exactly is Cushing's?" I am amazed!!! So, I have made it my goal, in honor of Cushing's Awareness Day, to educate as many people as I can. It's a shame that people in the MEDICAL FIELD don't know what it is! So, every doctor's appointment, every lab, any contact I have with medical personnel....even the receptionists.....I am going to tell them about Cushing's. No telling how many people in the medical field don't really know what Cushing's is, but are too embarassed to ask because they are in the medical field and they realize they SHOULD know what it is. It's embarassing to admit not knowing about a certain disease. The great thing that happened last week ....when I told the X-Ray tech about Cushing's, she said she had a friend that sounded just like that. She actually asked how to spell it (they always want to spell it like Cushion's) and she wrote it down. I hope her friend gets the help she needs. So, that's my mission. HAPPY CUSHING'S AWARENESS DAY YA'll!!! Hugs, Cindy