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Everything posted by Kristy

  1. Hi Jody, Post-op, I was out of work about 8 weeks, primarily because I wasn't stable enough to go to work sooner. I am glad you are going to NIH! I think you will be well cared for! It is true that many of us cured cushies don't stick around. I quit posting regularly a number of years ago. Life just had me busy, and this is a good thing! I had the microadenoma that was left to grow while the doctors squabbled about me having or not having Cushings over a 5 year period. I ultimately was diagnosed with Cyclical Cushings in 2004. Unfortunately for me, the tumor grew all throughout the gland during this time. Post surgery, the tumor grew back in fragments. For me, radiation using gamma knife was the right choice instead of a second surgery. I've continued to work and I'm working on my MBA. I haven't returned completely to pre-cushings status (I think the weight loss is the hardest), but have major improvements. For me, having my mind back in working order has been the most blessing. Take care, and keep positive for the days ahead! Kristy
  2. I'm doing good Gina. I've had a plateful here lately and have been MIA on the patient boards. I started a new job last December. My daugher graduates college this summer, is marrying, and is moving away! My eldest son is also moving to college this fall. Soon it will be just me and my hubby and my youngest son. I hope the SOM230 ends up being a viable option. In the interim, for me, the keto is doing its job. I am cycling still, but the cycles that bust through the blockade happen every now and again - like I am fine for a month, then a few days of restless sleep and the works, then back to normal. If I don't take my keto (I take 200 3x per day), on time, the same time everyday, my body complains. First I get the facial flushing, then my cheeks feel hot, then I start sweating. Even my youngest notices when "Mommy needs her meds." The drug is helping me and is a good alternative for me at this time. I started seeing Dr. Devin a few months ago. I like her team. I like her. Dr. McCutcheon referred me to her about 4 months ago. My insurance had changed, and the tests I normally would run that were ordered by Dr. Petak couldn't all be done at the new lab that was on my insurance. I was really nervous about seeing her. I was so afraid that all of the problems I had during diagnosis would resurface. On her request, I ordered the medical records post surgery from Dr. Petak and the records from Dr. Ludlam. She reviewed them, didn't make mention of them at all, and was and has been very professional. I think she is one who thinks for herself. I admire that in people. I also notice her staff and her fellow both have good attitudes. I really am doing alot to try to be healthy in the midst of this. My vitamin D tends to drop off into the gutter if I am not careful. I do take vitamins, (specially b-complex) and I try to get some outside sunlight, but it really helped when Dr. Devin suggest I add yogurt into my diet 2x per day. I know... I know... yougurt... blech... but I do like it with a handful of granola, and I do like it with real peaches added, and I do like it with real blueberries added. I also like to slice up bannana real thin and freeze it on a cookie sheet, (after they are frozen, they go well into a ziploc) then add the ice-bananna to it. Anyways, between these changes and 6 weeks of medical therapy, my vitamin D was actually excellent this time! Actually, all of my labs were excellent this time! A few are still outstanding, but I don't expect anything to be an issue. I know that someday, we will have to talk about next steps, but I am hoping to hold the disease steady until I finish up my new construction project. I think as long as I am doing well on the medical therapy and my tumor regrowth remains in control, and my overall health holds, there isn't a problem. I think between both Dr. Devin and Dr. Petak, they will keep a good objective eye on me. I miss everyone and think of you often! Kristy
  3. Sign me up! I've been on keto for over a year now... and if it can stop that little bugger from secreting too much acth...I'm with it. I wish anyways... sigh... k
  4. Nope... just can't seem to find that magic bullet. What I have noticed though, is patients who were suspected of cushings who took avandia and actos, that it did take alot longer to have their cushings diagnosed. Unfortunately, one of the side effects of the medicines was weight gain... so it seems to me that it may have helped biochemically, but when you are trying to tell your doctor that something is terribly wrong... Never mind... you all know where I am going.
  5. The drug is Avandia... and with all of the new warnings about it... I expect they are looking for another way. http://www.fda.gov/bbs/topics/NEWS/2007/NEW01636.html
  6. Interesting - my 1.5t image showed a right tumor, my 3t showed a left tumor, the surgeon found tumor on both sides. Thanks Mary
  7. Well, maybe she has ectopic carcinoid that has a genetic component or even possibly Multiple Endocrine Neoplasia, as this is a form of genetic based cushings.
  8. He has type 1 diabetes too, so when the skin eruptions started many years ago, they attributed it to the diabetes. It wasn't until about a year and a half ago, when my mom started to take him to the endo and got his diabetes straight, that the endo realized something wasn't quite right. His skin eruptions had gotten so bad that they would grow to the size of a fist in weird places - legs, lower arms, and a huge one developed on his neck. The endo did some blood work and told my brother to go to the emergency room. His kidneys were in failure. Fortunately, after about 4 major hospital stays, and being poked and prodded by every kind of doctor, and put on real high dose steriods along with another mess of meds, he is stable for as well as he can be stable. He lost much of his vision in one eye due to the sarcoid. He has it in his lungs, csf, heart, kidneys, eyes, and probably everywhere else. The doctor almost put him on dialysis. His kidney function is right around 25%. His long term prognosis is poor, but we have faith that God isn't done with him yet. Each turn with him is full of joys and and others heartbreak. So much for a man of 35. Through him, I learned taht sarcoid can be very serious and life threatening. When I look at all he has gone through and how many times he sat on death's door, I am very thankful for the time God is giving us to be with him. Cathy, his fight is much worse than mine has ever been, and probably ever will be. I'll keep you in my prayers, Cathy. I will pray for you strength and wisdom for your doctors. Hugs... Kristy
  9. Cathy, it is like causing adrenal blockade induced nelsons in some patients. I figure the same number of patients who get a bla and get nelsons (no radiation done - 30%) would be the same for the keto patient population. I guess if you decided to get a BLA, your endo would probably not be too worried about your nelson's risk. I am on 500mgs of keto. I could probably go higher to make my body happier, but my endo says no way. My brother is on 40 mgs of prednisone to keep his sarcoid in check. He has multisystemic sarcoidosis, and his long term prognosis is poor, but he keeps on ticking... How are you doing?
  10. Yes, this is great news for ectopic Cushings patients!
  11. This drug is already used to treat acromegaly. Tammy noticed alot of improvement on the trial. It is a 15 day trial. If results are promising, this could lead to a medicine approach to treating Cushings. I'd do it... but... I didn't meet the criteria for the protocol. Good luck!
  12. 10-15 new cases of Cushings per million is all Cushings cases, steriod induced, pituitary, adrenal, and cancer. Steriod induced Cushings is predominate. 13% of hormone secreting tumors are ACTH secreting tumors. 15% are GH secreting. The stats for GH secreting tumors that cause acromegaly is about 3 people per million per year, so that means ACTH secreting pituitary tumors that cause Cushings Disease are 1-2 people per million per year. That puts adrenal cushings
  13. For those who are wondering... you can change the skin color at the bottom left of the webpage .
  14. I don't... it isn't new, just 'new and improved' so... I am skeptical. There is more to pituitary tumors than growth. There is a whole issue about the hormone side of the story. You first. :ph34r:
  15. This is actually based on research that came out a few years ago with 11-[beta]-hydroxysteroid dehydrogenase and mice. You can read alot about the research on the web. I don't know if it will help us or not, but I know I was willing to try just about anything - lol. Pseudo cushings, cushings, crazy woman... I had gotten just about to the point where quite frankly, it didn't matter.... I was ill. He knew it too.... he knew it.
  16. His e-mail on his website is returning to sender, so it is ole letter and stamp... I am sending mine!
  17. Maybe Dr. Bost in Beaumont Texas has never REALLY had a cushings patient as a patient? Dr. Brent. Bost 3030 NORTH ST STE 310 BEAUMONT, Texas 77702 k
  18. I don't think it is about us. I think it is about donor fees, funds, grants, symposia, abstracts, speaker fees, and fame, not to mention admiration from friends and colleagues. Sadly, we have a few doctors who have forgotten why they are doctors. My uncle is a doctor - quite a surgeon amongst his colleagues, and he is quick to tell me all of the papers he has spent his lifetime on... and the lectures and the travels.... but I wondered as he once talked with me about his personal accomplishments amongst his colleagues... if he felt the same pride when he put humpy dumpty back together again... if he felt that same glow when he put shattered limbs, flesh, and soul back together again. Mother called me last week to tell me that my uncle was so upset, that he couldn't ski anymore, he tore his retina. I can't ski - too weak. Wonder if he can operate anymore. God thing? I went to a Healthcare Design Conference last week and had a blast listening to the case studies presented by design professionals solving problems in our hospitals and healthcare facilities. These people have the patients, doctors, and hospital staff as primary focus. It was like... here is the problem, and here are our constraints, and this is how we solved it and look at the result Whoo Hoo! The breakouts presented by the academia though... I wonder about those published studies. (Skeptic) But... I have a medical library card... and am glad to use it for you! Just ask! There is always another way
  19. I wear my pin everyday on my work badge!
  20. Here is a new article! The biochemical investigation of Cushing syndrome MARIE SIMARD, M.D. Division of Pediatric Endocrinology, Department of Pediatrics, University of Utah School of Medicine, Salt Lake City, Utah Neurosurg Focus 16 (4):Article 4, 2004, http://www.aans.org/education/journal/neur...pr04/16-4-4.pdf
  21. I was watching TV the other night, and they had an episode where the wife on this sitcom had alot of stress and was loosing hair by the handfuls. She went to the doctor and he checked her out and did testing. Her thyroid was fine. He told her to exercise and lose weight. So... the rest of the story started off on her exercise adventure with her husband... I lost interest pretty quickly (Im not a TV watcher anyways). Nice article... It is nice to get more attention about stress and what stress does to the body in the media. Now if we can get the discussion bumped up just a wee bit higher .
  22. Interesting case about an ectopic ACTH secreting tumor. You will need to register to see this article, but registration is free: http://www.medscape.com/viewarticle/469833 A 42-Year-Old Cushingoid Man With a Bleeding Duodenal Ulcer A man with a 15-year history of heartburn presented to clinic after his symptoms became more frequent and severe. The patient also observed a 20-lb weight gain; increased facial hair; and acne. Here is the summary: Although our patient had a rare tumor, the differential diagnosis illustrates the interesting biologic spectrum of neuroendocrine tumors of the pancreas. These tumors can occur sporadically in patients without a family history. However, one tumor can produce multiple hormones. In this situation, the tumors may mimic the MEN syndromes, prompting a search for second or third tumors. The presence of MEN-1 syndrome should be investigated in all patients with concomitant Zollinger-Ellison syndrome and Cushing's syndrome. Only a full hormonal and anatomic evaluation can clarify the clinical alternatives: one tumor producing multiple hormones vs multiple endocrine tumors. Gastrinomas that produce ACTH are much more biologically aggressive than simple gastrinomas. Therapy is not based on prospective randomized clinical trials but on appreciating the unique combination of hormone production and tumor spread. Treatment decisions first involve symptom control, then a multidisciplinary approach that may include surgical debulking, somatostatin analog therapy, and chemotherapy
  23. Some of the links above are 'dead' or non-existent, so I decided to 'refresh' and add some new; I was also working on a request from a new board member who needed the information. Cushings' Syndrome by Dr. David N. Orth http://www.profmourao.hpg.ig.com.br/36.pdf From the Endocrine Society Up to Date: http://patients.uptodate.com/frames.....disease The Diagnosis and Differential Diagnosis of Cushing?s Syndrome and Pseudo-Cushing?s States http://edrv.endojournals.org/cgi/content/full/19/5/647 Diagnosis and Management of Cushing?s Syndrome: Results of an Italian Multicentre Study http://jcem.endojournals.org/cgi/content/full/84/2/440 Cushing's disease: clinical manifestations and diagnostic evaluation - American Family Physician http://www.aafp.org/afp/20000901/1119.html#al1 Cushings Syndrome by Dr. Goodarzi from UCLA: http://www.endocrinology.med.ucla.edu/cushing's_syndrome.htm National Institutes of Health Cushing Syndrome: http://www.nichd.nih.gov/publications/pubs/cushings.htm Nutrition Information for Patients who have Cushing's (pdf) http://www.cc.nih.gov/ccc/patient_educatio...bs/nutrcush.pdf National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) Cushings Syndrome: http://www.niddk.nih.gov/health/endo/pubs/...gs/cushings.htm National Adrenal Foundation: http://www.medhelp.org/nadf/ ENDOCRINE CARE: Dimitris A. Papanicolaou, Nancy Mullen, Ioannis Kyrou, and Lynnette K. Nieman Nighttime Salivary Cortisol: A Useful Test for the Diagnosis of Cushing?s Syndrome J. Clin. Endocrinol. Metab., Oct 2002; 87: 4515 - 4521. http://jcem.endojournals.org/cgi/reprint/87/10/4515.pdf Psychosomatic Medicine ORIGINAL ARTICLES: Monica N. Starkman, Bruno Giordani, Stanley Berent, M. Anthony Schork, and David E. Schteingart Elevated Cortisol Levels in Cushing?s Disease Are Associated With Cognitive Decrements http://www.psychosomaticmedicine.org/cgi/r...nt/63/6/985.pdf American Journal of Neuroradiology BRAIN: Frank S. Bonelli, John Huston III, Paul C. Carpenter, Dana Erickson, William F. Young, Jr., and Frederic B. Meyer Adrenocorticotropic hormone?dependent Cushing's Syndrome: Sensitivity and Specificity of Inferior Petrosal Sinus Sampling AJNR Am. J. Neuroradiol., Apr 2000; 21: 690 - 696. http://www.ajnr.org/cgi/reprint/21/4/690.pdf Modern Pathology CASE REPORTS: Shigeyuki Tahara, Reiko Kurotani, Yudo Ishii, Naoko Sanno, Akira Teramoto, and R. Yoshiyuki Osamura A Case of Cushing?s Disease Caused by Pituitary Adenoma Producing Adrenocorticotropic Hormone and Growth Hormone Concomitantly: Aberrant Expression of Transcription Factors NeuroD1 and Pit-1 as a Proposed Mechanism Mod. Pathol., Oct 2002; 15: 1102 - 1105. http://modpath.uscapjournals.org/cgi/reprint/15/10/1102.pdf Hypertension COLIN JOHNSTON - A CELEBRATION: Judith A. Whitworth, George J. Mangos, and John J. Kelly Cushing, Cortisol, and Cardiovascular Disease Hypertension, Nov 2000; 36: 912 - 916. http://hyper.ahajournals.org/cgi/reprint/36/5/912.pdf A new website you can also visit is http://www.endotext.org/. If you find any other helpful articles and websites, please add them here!
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