CathyM

Another interesting article in medscape... http://www.medscape.com/viewarticle/565417_1 CathyM

Thanks guys... I printed this out yesterday. Thanks for thinking og me... Cathy

Well, things have been quite good. I don't know if my new puppy has anything to do with it, but she sure does bring som brightness into this dark life of mine. She is a reason to get outside, even if it's only for a short time. I haven't been having the joint pains since I last posted and that alone feels great. I have had energy to do a bit and have tried not to overdo it like I usually do, when I get this way. It's so easy to fool yourself into beliving that you can do everything you used to do, just because you feel good. Anyhow I think I finally started to understand that I need to enjoy these periods instead of using all my energy on housework. I think this part of my cycle is the part that gives me the strength to get thru the next cycle. Anyhow, I am enjoying the fact that my acne has decided to leave me alone for a while. Not having 8 pimples on my face feels good. I only have 1 2 at the moment and it feels like heaven. My mood has been quite good too. No big swings, but my period is due soon, so I am just waiting for those to break loose. See my endo on August 31st, and looking forward to that. I feel like things are just standing still. I have been on sick leave for a year now! I miss work, but most of all I miss being social. I have always been a social person, but nowadays I prefer to stay home for so many reasons. Thats why I am so glad to have the puppy. She makes me get outside a few short times a day. I guess I don't have anything important to say, so I'll just call it a night....

Thank you so much for your prayers!

Well.. I haven't been up to posting. My endo winded up diagnosing me with PCOS. She only did one cortisol test and that was morning cortisol, and that came back on the low end of normal as it always does. Anyhow she said my free testesterone was elevated and that combined with my symptoms were enough for her to diagnose me with PCOS. My gut is telling me this is NOT PCOS. I know I have some of the symtpoms, but my gut won't let go of the Cushings. I know I need to be tested before I can. I did find a great pdf about testing for Cushings that is in norwegian, and is written by specialists. I am going to bring it with me when I see the endo again at the end of this month. She decided to treat my BP, so I am lucky enough to have another appointment with her. I feel like shit at the moment. I wake up with no pain what so ever, but as soon as I sit up in bed, I feel that my body must have been pulling a joke on me. As soon as I plant my feet on the floor I know that it is going to hurt to put pressure on them. And so it does. I don't feel bad at all walking up the stairs or while I make myself a quick breakfast and have a cup of coffee, but as soon as I am done, the muscle pain in my thighs, calves and arms hit me. I know that the next time I try walking up those stairs, I will have a hard time. I will feel like there is no energy left in me to pull myself up. I know that those muscles are going to ache all day long, and when I hang up the laundry that I have to do, I will feel like I just finished an hours work-out. I know that about an hour or two after breakfast I'll have to sleep. I won't be able to sit straight, because I will feel like I've been drugged. I will hardly know how to get myself out of the chair and into bed. I'll fall asleep right away and I'll sleep for a good 3 hours. When I wake up, my eyes will burn and I will feel awful. Later on in the day I will have shooting pains that travel thru my body. My bones and joints will ache. And alot of the time I have to watch out when I walk, since my ankles will give away under me. The pain feels just like a sprained ankle only mine isn't. My fingers will hurt and so will my toes. My right hand will feel swollen and both my legs will be swollen. I'll go to bed at 3 am and sleep until 7 or 8. I will wake up and it will start all over again... unless my cycle decides to change! I am hoping it does soon....

Read it here..... http://www.skullbaseinstitute.com/papers/c...progressive.htm or here: Abstract Patients with Cushing disease are thought to have progressive and unremitting symptoms if left untreated. We report a patient with documented Cushing disease that was untreated for 26 years. A 50-year-old woman presented with a medical history consistent with longstanding Cushing syndrome. A dexamethasone suppression test done 26 years before our evaluation confirmed Cushing syndrome. She was lost to follow up and remained untreated over a 26-year span. During this period, she had episodes of fatigue, weight gain, menstrual irregularity, and hypertension. These episodes were punctuated with periods of transient cessation of her symptoms. She presented to us after worsening of symptoms. Cushing syndrome was suspected and confirmed by elevated urinary-free cortisol and 17-hydroxycorticosteroid. Pituitary magnetic resonance imaging revealed a 4-mm adenoma. A pituitary tumor was identified at transphenoidal surgery, and the patient became hypocortisolemic postoperatively. Cushing disease has generally been thought to be a progressive and unremitting disease. This case illustrates that, in contrast to our current thinking, Cushing disease is not necessarily a progressive disease. Keywords Cushing disease, episodic Cushing disease (The Endocrinologist 2005;15: 343?344) Endogenous overproduction of plasma corticosteroids leads to the signs and symptoms of Cushing syndrome. The etiologies of hypercortisolism include pituitary-dependent adrenal hyperplasia (Cushing disease), adrenal tumor, or a nonpituitary adrenocorticotropic hormone (ACTH)-producing tumor (ectopic Cushing syndrome). The most common of these etiologies is Cushing disease.1,2 Since it was first described, Cushing disease has been thought to be unremitting and progressive if left untreated.3 We describe a patient with documented, untreated Cushing disease for at least 26 years, who challenges this notion of unrelenting hypercortisolism. Case Report A 50-year-old white woman with a medical history of asthma, hypothyroidism, and longstanding hypertension presented with obesity (body mass index . 36 kg/m2), severe fatigue, mild hirsutism, alopecia, scalp acne, round plethoric face, abdominal striae, bruises, buffalo hump, supraclavicular filling, and muscle atrophy. The patient was hospitalized at the age of 24 with uncontrollable hypertension refractory to medical therapy. At that time, she had the physical stigmata of Cushing syndrome, and she reported fatigue and weight gain. Her doctor performed an overnight dexamethasone test, which revealed an 8:00 AM serum cortisol of 33.7 .g/dL (normal, .54). The patient was not told the test results and was lost to follow up. Over the next 26 years, she did not seek or receive further workup or treatment and continued to have episodic fatigue, weight gain, menstrual irregularity, and hypertension. These symptoms were punctuated with episodes of transient cessation of symptoms and a general sense of well-being. During a 3-month period in 2003, the patient had uncontrollable hypertension and weight gain. The symptoms subsided during the following 3 months and her blood pressure fell into the normal range. She lost 2 inches from her waist with no effort. This episode was followed by a return of the cushingoid symptoms, and she again sought medical care. Her new physician suspected a diagnosis of Cushing syndrome and she was referred to us for evaluation. Cushing syndrome was then confirmed by elevated urinary-free cortisol and 17-hydroxycorticosteroid excretion. Pituitary magnetic resonance imaging (MRI) revealed a 4-mm adenoma. Endoscopic pituitary surgery also identified the adenoma. The pathology specimen showed "corticotrope" hyperplasia and cortisol levels fell to the low-normal range postoperatively. Discussion Plotz et al described the natural history of Cushing syndrome in 1952.3 Cushing syndrome was thought to have a 5-year mortality rate of approximately 50%. Patients with hypercortisolism died primarily from infection, cardiovascular disease, and stroke. The treatment options were rudimentary and patients suffered equally from diagnostic and therapeutic complications and progression of the disease. In many cases, the poor outcome did not reflect untreated disease, but rather the complications associated with therapy.3 This mortality has improved as better therapeutic options become available. The notion that, if left untreated, death from Cushing syndrome will occur "sooner rather than latter" has endured. We suspect that, in some patients with Cushing disease, especially those with episodic Cushing disease, the natural history is not as bad as previously thought. Our case report illustrates this point. Some pituitary adenomas are strongly periodic with hypersecretion of ACTH interspersed with near-normal function.5 This seems to allow the patient to recover from symptoms of Cushing syndrome during hypocortisolemic periods. Case reports over the years show that some patients with hypercortisolism exhibited episodicity in their symptoms.5,6 Our patient also exhibited this episodicity. Episodic hormone secretion may also explain why persons who appear cushingoid have seemingly normal biochemical studies that do not confirm the presence of the disease. Testing in a "quiescent" period when ACTH secretion and cortisol secretion are normal may lead to misleading conclusions regarding the diagnosis. Testing for Cushing syndrome should be performed during an active period to detect hypercortisolism. Multiple tests may be required.5,6 This case describes the natural history of a patient with episodic Cushing syndrome. This history tends to contradict the view held by many physicians that "if you had Cushing syndrome for this long, you would have been dead." It is unlikely that the prognosis of untreated Cushing disease will ever be known. Identified disease ethically warrants intervention. All of the studies available examining the "natural history" of Cushing syndrome describe series of patients in whom most were treated or interventions were implemented.2,3,7,8 Episodic Cushing syndrome may encompass a larger segment of the disease than currently thought and may spare the untreated patient from increased morbidity. Nevertheless, this patient had poor quality of life for most of her adult years, which could have been prevented by earlier diagnosis and treatment. References F. TC. The adrenal gland. In: Andreoli TE, Carpenter CCJ, Griggs R, et al., eds. Cecil Essentials of Medicine, 6th ed. Philadelphia: WB Saunders; 2004:603? 614. Lindholm J, Juul S, Jorgensen JOL, et al. Incidence and late prognosis of Cushing?s syndrome: a population-based study. J Clin Endocrinol Metab. 2001;80:117?123. Plotz C, Knowlton A, Ragan C. The natural history of Cushing?s syndrome. Am J Med. 1952;13:597? 614. Stewart PM. The adrenal cortex. In: Larsen P, Kronenberg H, Melmed S, et al., eds. Williams Textbook of Endocrinology. Philadelphia: WB Saunders; 2003. Sakiama R, Ashcraft MW, Van Herle AJ. Cyclical Cushing?s syndrome. Am J Med. 1984;77:944 ?946. Atkinson A, Chestnutt A, Crothers E, et al. Cyclical Cushing?s disease: two distinct rhythms in patients with a basophil adenoma. J Clin Endocrinol Metab. 1985;60:328 ?332. Urbanic RC, George JM. Cushing?s disease?18 years of experience. Medicine. 1981;60:14 ?24. Welbourn RB, Montgomery DAD, Kennedy TL. The natural history of treated Cushing?s syndrome. Br J Surg.

Well, I did my testing last Thursday. I have taken loads of blood tests during my life, but I have never ever had as much trouble drawing as I did this time. The nurse had 17 vials in front of her and she couldn't find one vein! She tried a few times with no luck and ended up calling in another nurse for help. The second nurse had no more luck then the first, when she finally struck blood she only got 3 vails. Then after trying the top of my hand, my wrist, my upper and lower arm, the first nurse noticed a vein on the back of my arm. They got some blood out of that, but then that stopped too. I have no problems drawing blood, but I was in pain at this point. Finally she found another vein on the back of my upper arm that she got the rest from. That very same day the endo called me. I was shocked and thinking "that was quick enough"!! She called because they messed up my potassium test and she needed me to come in again to draw more blood!! I started laughing and told her that I had been there for an hour earlier that day, and that I had no veins left to use. Anyhow, I went back on Mondy and I have been waiting ever since. The nurse said it could take about 2 weeks. And 2 weeks is a long time when you are waiting for them to pass. My body hasn't been retaining as much fluids as it was the week before my tests. Thank goodness. I hate that stiff feeling. My symtpoms have been cyclic and nowadays my ankle hurts me bad. I have a hard time walking and it has started hurting even when I am off it. The pain I get when sitting is in the front tho. My fingers hurt too. I think it has to be tendons that are inflammed. I've been getting the flank pain alot too. Luckly it isn't a real bad pain. I can live with it even tho it worries me and keeps me thinking. Oh well.. not much to report! My girlfriend is getting married tomorrow, so that is at least something to look forward to! Hope you all stay well! Til next time....

Well.. after 10 days off the diuretics, I am retaining enough water to fill my a backyard pool. My feet and lower legs hurt when I walk, making my daily life hell. As if I don't have enough with the fatiuge, back pain and all the other issues. Anyhow - looking on the bright side, there is only 4 days left until I do those tests. I can't wait to do them, just so I can ask how long it will take until they are done. My endo promised me she would call as soon as she got the results. I am only hoping it doesn't take forever. The monday after would be great - thats only 1 week from today! I have been kinda depressed again lately. Having a hard time concetrating and all together using my mind for anything productive. I hear people talk to me, but I don't have the slightest clue how to listen to the words. I know this is what is getting to me. Well, this and the fact that I put on loads of weight after stopping the diuretics. I was walking and now I can't even do that cause of the pain. I just want someone to find out whats wrong so I either have to except the fact that I am sick or so that I can be cured and move on with my life. I pray so hard for that to happen. Sometimes I don't know how much more I can take. Well.. Thanks for reading this anyhow.

I hit the jackpot yesterday. I recived a phonecall from the endo's office. The nurse asked if I could come in on short notice since they had an opening and all of my labs were done. I grabbed the chance and so I saw a lady endo today. She started by telling me all of my labs looked good!! I could feel the tears pushing as soon as she said those words, but somehow I kept it together and told her that the labs might be good but my body isn't. I also told her that some things had happend since she got the referral from my doctor. My PTH is out of range and so is my vitamin D (low) I think she could see that I was upset and she took time to listen. She did tell me that my potassium is low and that is kind of wierd since I am on meds for my BP/edema that withhold potassium. She also told me that my testestorone is normal, but one of the tests that show free serum testestorone was elevated. She also wanted to look into the PTH and low vit D. She did mumble something about malabsorbtion, but she did order alot of tests on my adreanals. So at least she wants to see if whats going on with the blood pressure and pth thing. I am having the following tests in 14 days (she wants me off all medicine except levaxin): Testosteron Androsendion SHBG PTH Ionised calcium 28-OH Vit D 1,25 (OH) Vit D 17-OH Progesteron 17 OH-Pregnenolon DHEA Sulf 11-Deoksicortisol Aldosterone Renin Meranefrin and normentanefrin Insulin C-peptide Iron Ferritin Vit B Folate Calcium total Magnesium Albumin Glucose HbAtC Cholesterol HDL LDL and a few more electolytes I think she is looking into Conns, Adrenocortical hyperplasia and maybe even MEN1? Well at least that is what all my research today has me beliving. I hate not knowing and I hate doctors that think they are god. Not that she is the worst of them, but she didn't do a very good job of telling me what she was looking for. Maybe I am difficult, but I still hate not knowing.