On FaceBook at https://www.facebook.com/permalink.php?story_fbid=10150169902158954&id=286088733953
#4 franski 2011-04-20 11:47
Would also love some info on the drug Miototane?
Please respond here or on his original questions at http://cushie.info/index.php?option=com_content&view=article&id=393:discussiondebate-topics&catid=4:about-us&Itemid=79#comment-24 Thanks!
#3 franski 2011-04-20 11:47
could use a lil help folks.Live in the wilds of N.Y state and can't seem to get treatment for my cushings.I'm lost with this and at the end of my rope.My doctor has confirmed the disease but has also told me he really doesn't know much about it.and the one endo who does is not taking new patients.wth!
Has anyone had experience with or know about Cyclical Cushing's? I am at a peak of frustration because I have had to get labs done over and over again with varying cortisol level results. I am eager to move on to treatment and feel that this is holding me back or that the medical field knows little about the possibility of cortisol cycles. I am desperate to hear about any experiences with this....Please reply at https://www.facebook.com/permalink.php?story_fbid=10150164376813954&id=286088733953
Nina writes: I was diagnosed with Cushing's in March of 2008. Doctor's removed a tumor and my right adrenal gland. I'm no longer on steriods. Feel much better however I think I might have adhd. Has anyone who has had Cushing's had ADHD? I'm a 55 year old female. Any import or comments would be appreciated. Thank you.Reply at http://cushie.info/index.php?option=com_content&view=article&id=238:dr-robert-lamberts-popular-doctorblogger&catid=34:interview-archives&Itemid=70#comment-22
Can you help this person who is discouraged getting a diagnosis? http://www.empowher....e#comment-83435My name is Kim an I am 32yrs. old, I am currently being tested for Cushings Syndrome. I am experiencing all symptoms from weight-gain, buffalo hump, thinning limbs,moon-face, you name it. I am very depressed an spend most of my time at home due to my physical features which kills my self-esteem. Reading similar story's of what I'm going through has help me to better understand what to expect with this syndrome. I many questions, if anyone could help me, I would appreciate the support.
Italian Journal of Pediatrics 2011, 37:15doi:10.1186/1824-7288-37-15
|Published:||7 April 2011|
Objective and Importance: despite recent progress in imaging, it is still difficult to distinguish between pituitary adenoma and hyperplasia, even using Magnetic Resonance Imaging (MRI) with gadolinium injection. We describe an example of reactive pituitary hyperplasia from primary hypothyroidism that mimicked a pituitary macroadenoma in a child.
Clinical Presentation: a 10 year old boy presented with headache and statural growth arrest. MRI revealed an intrasellar and suprasellar pituitary mass. Endocrine evaluation revealed primary hypothyroidism.
Intervention: the patient was started on levothyroxine with resolution of the mass effect.
Conclusion: primary hypothyroidism should be considered in the differential diagnosis of solid mass lesions of the pituitary gland. Examination of thyroid function in patients with sellar and suprasellar masses revealed by MRI may avoid unnecessary operations which can cause irreversible complications.
Many of you only know one person with Cushing’s. It is difficult to understand or keep up with ‘your person’ as s/he seeks treatment. You have probably never known someone with Cushing’s before, right? You do know, however, that ‘your person’ talks about Cushing’s a lot or is pretty darned passionate about their Cushie friends. We lean on and help others even as we struggle to find our way through complicated testing, surgery (-ies), and hopefully, cures.You see, for us, we know MANY people with Cushing’s through cushings-help.com website. Cushing’s is a house guest who ruins our lives and won’t leave us alone. We Cushies all find it incredibly frustrating to have hit the many walls. We see it every day: patients insulted, dismissed, and defeated. When it happens to us, we are often rendered speechless. When we see our fellow Cushies meet the same poor medical treatment, we become incensed. Ultimately, we know our bodies best, and we are found to be correct. We know when we have a disease as devastating as Cushing’s. For Cushing’s Awareness Day, we compiled this list of Cushing’s patients from all over the world who are fighting Cushing’s and seek treatment and a cure through multiple surgical procedures and even radiation. A glossary of terms is located at the bottom of the list. Every patient wants to be understood, supported, and cared for. We want you to know that we are one of many who suffer from this ‘rare’ albeit rarely diagnosed disease. Today, the Cushing community stands before you, asking you to recognize us for the struggles we face and for you to be the most supportive and caring friend or family member you can be to ‘your person.’ (NOTE: This is only a sample collected through a short time on the Cushing’s messages boards. There are many, many more patients like us).
MaryO'Note: Thanks for doing all this work, Melissa! You did a fantastic job and the numbers are really telling.Since you said we could copy it, I'm going to put it on http://www.cushie.info if you don't mind. If anyone on this list has a bio on the website, and you'd give your permission, I'd like to link your bio to your stats on this list. Thanks!
April 8th is Cushing's Awareness Day. Please wear your Cushing's ribbons, t-shirts, awareness bracelets or Cushing's colors (blue and yellow) and hand out Robin's wonderful Awareness Cards to get a discussion going with anyone who will listen. And don't just raise awareness on April 8. Any day is a good day to raise awareness.