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  1. A simple test that measures free cortisol levels in saliva at midnight — called a midnight salivary cortisol test — showed good diagnostic performance for Cushing’s syndrome among a Chinese population, according to a recent study. The test was better than the standard urine free cortisol levels and may be an alternative for people with end-stage kidney disease, in whom measuring cortisol in urine is challenging. The study, “Midnight salivary cortisol for the diagnosis of Cushing’s syndrome in a Chinese population,” was published in Singapore Medical Journal. Cushing’s syndrome, defined by excess cortisol levels, is normally diagnosed by measuring the amount of cortisol in bodily fluids. Traditionally, urine free cortisol has been the test of choice, but this method is subject to complications ranging from improper collection to metabolic differences, and its use is limited in people with poor kidney function. Midnight salivary cortisol is a test that takes into account the normal fluctuation of cortisol levels in bodily fluids. Cortisol peaks in the morning and declines throughout the day, reaching its lowest levels at midnight. In Cushing’s patients, however, this variation ceases to exist and cortisol remains elevated throughout the day. Midnight salivary cortisol was first proposed in the 1980s as a noninvasive way to measure cortisol levels, but its efficacy and cutoff value for Cushing’s disease in the Chinese population remained unclear. Researchers examined midnight salivary cortisol, urine free cortisol, and midnight serum cortisol in Chinese patients suspected of having Cushing’s syndrome and in healthy volunteers. These measurements were then combined with imaging studies to make a diagnosis. Overall, the study included 29 patients with Cushing’s disease, and 19 patients with Cushing’s syndrome — 15 caused by an adrenal mass and four caused by an ACTH-producing tumor outside the pituitary. Also, 13 patients excluded from the suspected Cushing’s group were used as controls and 21 healthy volunteers were considered the “normal” group. The team found that the mean midnight salivary cortisol was significantly higher in the Cushing’s group compared to both control and normal subjects. Urine free cortisol and midnight serum cortisol were also significantly higher than those found in the control group, but not the normal group. The optimal cutoff value of midnight salivary cortisol for diagnosing Cushing’s was 1.7 ng/mL, which had a sensitivity of 98% — only 2% are false negatives — and a specificity of 100% — no false positives. While midnight salivary cortisol levels correlated with urine free cortisol and midnight serum cortisol — suggesting that all of them can be useful diagnostic markers for Cushing’s — the accuracy of midnight salivary cortisol was better than the other two measures. Notably, in one patient with a benign adrenal mass and impaired kidney function, urine free cortisol failed to reach the necessary threshold for a Cushing’s diagnosis, but midnight salivary and serum cortisol levels both confirmed the diagnosis, highlighting how midnight salivary cortisol could be a preferable diagnostic method over urine free cortisol. “MSC is a simple and non-invasive tool that does not require hospitalization. Our results confirmed the accuracy and reliability of [midnight salivary cortisol] as a diagnostic test for [Cushing’s syndrome] for the Chinese population,” the investigators said. The team also noted that its study is limited: the sample size was quite small, and Cushing’s patients tended to be older than controls, which may have skewed the results. Larger studies will be needed to validate these results in the future. From https://cushingsdiseasenews.com/2019/01/10/midnight-salivary-cortisol-test-helps-diagnose-cushings-chinese-study-shows/
  2. Patients with subclinical hypercortisolism, i.e., without symptoms of cortisol overproduction, and adrenal incidentalomas recover their hypothalamic-pituitary-adrenal (HPA) axis function after surgery faster than those with Cushing’s syndrome (CS), according to a study. Moreover, the researchers found that an HPA function analysis conducted immediately after the surgical removal of adrenal incidentalomas — adrenal tumors discovered by chance in imaging tests — could identify patients in need of glucocorticoid replacement before discharge. Using this approach, they found that most subclinical patients did not require treatment with hydrocortisone, a glucocorticoid taken to compensate for low levels of cortisol in the body, after surgery. The study, “Alterations in hypothalamic-pituitary-adrenal function immediately after resection of adrenal adenomas in patients with Cushing’s syndrome and others with incidentalomas and subclinical hypercortisolism,” was published in Endocrine. The HPA axis is the body’s central stress response system. The hypothalamus releases corticotropin-releasing hormone (CRH) that acts on the pituitary gland to release adrenocorticotropic hormone (ACTH), leading the adrenal gland to produce cortisol. As the body’s defense mechanism to avoid excessive cortisol secretion, high cortisol levels alert the hypothalamus to stop producing CRH and the pituitary gland to stop making ACTH. Therefore, in diseases associated with chronically elevated cortisol levels, such as Cushing’s syndrome and adrenal incidentalomas, there’s suppression of the HPA axis. After an adrenalectomy, which is the surgical removal of one or both adrenal glands, patients often have low cortisol levels (hypocortisolism) and require glucocorticoid replacement therapy. “Most studies addressing the peri-operative management of patients with adrenal hypercortisolism have reported that irrespective of how mild the hypercortisolism was, such patients were given glucocorticoids before, during and after adrenalectomy,” the researchers wrote. Evidence also shows that, after surgery, glucocorticoid therapy is administered for months before attempting to test for recovery of HPA function. For the past 30 years, researchers at the University Hospitals Cleveland Medical Center have withheld glucocorticoid therapy in the postoperative management of patients with ACTH-secreting pituitary adenomas until there’s proof of hypocortisolism. “The approach offered us the opportunity to examine peri-operative hormonal alterations and demonstrate their importance in predicting need for replacement therapy, as well as future recurrences,” they said. In this prospective observational study, the investigators extended their approach to patients with subclinical hypercortisolism. “The primary goal of the study was to examine rapid alteration in HPA function in patients with presumably suppressed axis and appreciate the modulating impact of surgical stress in that setting,” they wrote. Collected data was used to decide whether to start glucocorticoid therapy. The analysis included 14 patients with Cushing’s syndrome and 19 individuals with subclinical hypercortisolism and an adrenal incidentaloma. All participants had undergone surgical removal of a cortisol-secreting adrenal tumor. “None of the patients received exogenous glucocorticoids during the year preceding their evaluation nor were they taking medications or had other illnesses that could influence HPA function or serum cortisol measurements,” the researchers noted. Glucocorticoid therapy was not administered before or during surgery. To evaluate HPA function, the clinical team took blood samples before and at one, two, four, six, and eight hours after the adrenalectomy to determine levels of plasma ACTH, serum cortisol, and dehydroepiandrosterone sulfate (DHEA-S) — a hormone produced by the adrenal glands. Pre-surgery assessment of both groups showed that patients with an incidentaloma plus subclinical hypercortisolism had larger adrenal masses, higher ACTH, and DHEA-S levels, but less serum cortisol after adrenal function suppression testing with dexamethasone. Dexamethasone is a man-made version of cortisol that, in a normal setting, makes the body produce less cortisol. But in patients with a suppressed HPA axis, cortisol levels remain high. After the adrenalectomy, the ACTH concentrations in both groups of patients increased. This was found to be negatively correlated with pre-operative dexamethasone-suppressed cortisol levels. Investigators reported that “serum DHEA-S levels in patients with Cushing’s syndrome declined further after adrenalectomy and were undetectable by the 8th postoperative hour,” while incidentaloma patients’ DHEA-S concentrations remained unchanged for the eight-hour postoperative period. Eight hours after surgery, all Cushing’s syndrome patients had serum cortisol levels of less than 2 ug/dL, indicating suppressed HPA function. As a result, all of these patients required glucocorticoid therapy for several months to make up for HPA axis suppression. “The decline in serum cortisol levels was slower and less steep [in the incidentaloma group] when compared to that observed in patients with Cushing’s syndrome. At the 6th–8th postoperative hours only 5/19 patients [26%] with subclinical hypercortisolism had serum cortisol levels at ≤3ug/dL and these 5 were started on hydrocortisone therapy,” the researchers wrote. Replacement therapy in the subclinical hypercortisolism group was continued for up to four weeks. Results suggest that patients with an incidentaloma plus subclinical hypercortisolism did not have an entirely suppressed HPA axis, as they were able to recover its function much faster than the CS group after surgical stress. From https://cushingsdiseasenews.com/2018/10/11/most-subclinical-cushings-patients-dont-need-glucocorticoids-post-surgery-study/?utm_source=Cushing%27s+Disease+News&utm_campaign=a881a1593b-RSS_WEEKLY_EMAIL_CAMPAIGN&utm_medium=email&utm_term=0_ad0d802c5b-a881a1593b-72451321
  3. A patient with depression developed Cushing’s syndrome (CS) because of a rare ACTH-secreting small cell cancer of the prostate, a case study reports. The case report, “An unusual cause of depression in an older man: Cushing’s syndrome resulting from metastatic small cell cancer of the prostate,” was published in the “Lesson of the Month” section of Clinical Medicine. Ectopic CS is a condition caused by an adrenocorticotropic hormone (ACTH)-secreting tumor outside the pituitary or adrenal glands. The excess ACTH then acts on the adrenal glands, causing them to produce too much cortisol. Small cell cancer is more common in older men, those in their 60s or 70s. Sources of ectopic ACTH synthesis arising in the pelvis are rare; nonetheless, ACTH overproduction has been linked to tumors in the gonads and genitourinary organs, including the prostate. Still, evidence suggests there are less than 30 published cases reporting ectopic CS caused by prostate cancer. Researchers from the Southern Adelaide Local Health Network and the Royal Adelaide Hospital in Australia described the case of an 84-year-old man who complained of fatigue, back pain, and lack of appetite. Blood tests revealed mildly elevated prostate-specific antigen (PSA) and creatinine levels, which could indicate the presence of prostate cancer and impaired kidney function, respectively. The patient had a history of locally invasive prostate cancer even though he didn’t experience any symptoms of this disease. Ultrasound examination showed an enlarged prostate plus obstructed ureters — the tubes that carry urine from the kidney to the bladder. To remove the obstruction, doctors inserted a thin tube into both ureters and restored urine flow. After the procedure, the man had low levels of calcium, a depressed mood, and back pain, all of which compromised his recovery. Imaging of his back showed no obvious reason for his complaints, and he was discharged. Eight days later, the patient went to the emergency room of a large public hospital because of back pain radiating to his left buttock. The man also had mild proximal weakness on both sides. He was thinner, and had low levels of calcium, high blood pressure and serum bicarbonate levels, plus elevated blood sugar. In addition, his depression was much worse. A psychiatrist prescribed him an antidepressant called mirtazapine, and regular follow-up showed that his mood did improve with therapy. A computed tomography (CT) scan revealed a 10.5 cm tumor on the prostate and metastasis on the lungs and liver. Further testing showed high serum cortisol and ACTH levels, consistent with a diagnosis of Cushing’s syndrome. But researchers could not identify the ACTH source, and three weeks later, the patient died of a generalized bacterial infection, despite treatment with broad-spectrum antibiotics. An autopsy revealed that the cancer had spread to the pelvic sidewalls and to one of the adrenal glands. Tissue analysis revealed that the patient had two types of cancer: acinar adenocarcinoma and small cell neuroendocrine carcinoma — which could explain the excess ACTH. Cause of death was bronchopneumonia, a severe inflammation of the lungs, triggered by an invasive fungal infection. Investigators believe there are things to be learned from this case, saying, “Neither the visceral metastases nor aggressive growth of the pelvic mass noted on imaging were typical of prostatic adenocarcinoma. [Plus], an incomplete diagnosis at death was the precipitant for a post-mortem examination. The autopsy findings were beneficial to the patient’s family and treating team. The case was discussed at a regular teaching meeting at a large tertiary hospital and, thus, was beneficial to a wide medical audience.” Although a rare cause of ectopic ACTH synthesis, small cell prostate cancer should be considered in men presenting with Cushing’s syndrome, especially in those with a “mystery” source of ACTH overproduction. “This case highlights the importance of multidisciplinary evaluation of clinical cases both [before and after death], and is a fine example of how autopsy findings can be used to benefit a wide audience,” the researchers concluded. https://cushingsdiseasenews.com/2018/10/16/rare-prostate-cancer-prostate-associated-cushings-syndrome-case-report/
  4. I think I knew this already but it's still hard to read in print Functional remission did not occur in most patients with Cushing syndrome who were considered to be in biochemical and clinical remission, according to a study published in Endocrine. This was evidenced by their quality of life, which remained impaired in all domains. The term “functional remission” is a psychiatric concept that is defined as an “association of clinical remission and a recovery of social, professional, and personal levels of functioning.” In this observational study, investigators sought to determine the specific weight of psychological (anxiety and mood, coping, self-esteem) determinants of quality of life in patients with Cushing syndrome who were considered to be in clinical remission. The cohort included 63 patients with hypercortisolism currently in remission who completed self-administered questionnaires that included quality of life (WHOQoL-BREF and Cushing QoL), depression, anxiety, self-esteem, body image, and coping scales. At a median of 3 years since remission, participants had a significantly lower quality of life and body satisfaction score compared with the general population and patients with chronic diseases. Of the cohort, 39 patients (61.9%) reported having low or very low self-esteem, while 16 (25.4%) had high or very high self-esteem. Depression and anxiety were seen in nearly half of the patients and they were more depressed than the general population. In addition, 42.9% of patients still needed working arrangements, while 19% had a disability or cessation of work. Investigators wrote, “This impaired quality of life is strongly correlated to neurocognitive damage, and especially depression, a condition that is frequently confounded with the poor general condition owing to the decreased levels of cortisol. A psychiatric consultation should thus be systematically advised, and [selective serotonin reuptake inhibitor] therapy should be discussed.” Reference Vermalle M, Alessandrini M, Graillon T, et al. Lack of functional remission in Cushing's Syndrome [published online July 17, 2018]. Endocrine. doi:10.1007/s12020-018-1664-7 From https://www.endocrinologyadvisor.com/general-endocrinology/functional-remission-quality-of-life-cushings-syndrome/article/788501/
  5. MaryO

    In Memory: Thomas F. Zachman

    Thomas “Tommy” F. Zachman, of Windsor, formerly of Toledo, Ohio, died suddenly and unexpectedly at University Hospital in Denver on June 3, 2010, complications of Cushing’s Syndrome. Read more at https://cushingsbios.com/2015/06/03/in-memory-thomas-f-zachman-1950-2010-2/
  6. Well I am having problems for the last week. I am having pains in my joints and muscles again, like when I was weaning off the hydro. In the morning it is a little better but the evenings are getting untolerable. Tried to call my PC this morning but have not been able to get through to her. I want to order salivary test, morning cortisol draw and thyroid tests. I'm so tired of all this, and my weight loss has stopped. How discouraging. Going to post on the forum see if I can get any advice. Hanging in there, Renata
  7. Marisa

    April 29 2010 - 11 weeks post op

    Well once again its been a while since I posted. Now I am feeling better. Not there yet but definately better. I still have some aches especially in the morning when I get up. My right arm feels like I have carpral tunnel, my two fingers keep falling asleep. I sleep at night with an arm brace and take it off in the daytime. I believe it is getting better. I also have tennis elbow, and that started acting up, but I know not to pick up heavy things until the pain subsides. I stopped taking ibuprofen, because it too was an anti inflammatory and I did want my body to heal on its own. So far so good. My legs started swelling and my bp started to rise. I spoke with the mother of that has a cushings daughter and she said when she took any type of antacid prescription it made her bp rise also. I have taken Aciphex for about almost a year. In the beginning Aciphex was the only prescription that would make my lower legs swell minimally and I had forgotten that. So I stopped taking the Aciphex about three weeks ago, and my bp is normally 127/78!!!! I was so happy, and no swelling in the legs. It had been so high the doctors gave me two types of high blood pressure medicine none of which I ever took. I still have a relatively high pulse, it is usually in the high 90s, but there is stress in my life right now so I attribute it to that. My blood sugar used to be in the low 200s, I am insulin resistant. Once again they wanted me on Metformin, and I wanted to try to tackle each of these problems one by one, as I did the blood pressure. Well I found out that by not eating I was not losing weight. I never ate much before the surgery, and now I do not still. So from the advice of a diabetic dietician, I started to eat small snacks, high fiber, throughout the day. I still need to eat more and more often but I am working my way there. Everytime I snack healthily throughout the day, the scales start to go down...so far I have lost 12 lbs. I try to eat high fiber, good fats, and protein. It seems to be working if I can keep up the eating. I am starting to get small pangs of hunger, and that is when I eat a small snack. I am lactose intolerant, gluten is bad for me, as well as casein. I do not drink milk, or eat bread...yet! I am hoping one day I will be able to eat those again. I take aloe juice for my stomach ulcers, and so far so good. (no prescription antacid for me) I had to endure the rebound effect for stopping the Aciphex, but I just loaded up on Sugar Free Tums, and still have them handy just in case. I ended up having an aversion to most foods as the pains from eating them were horrific. So I opted to not eat much at all and pre surgery was gaining weight...a cushie symptom. However, back to my blood sugar levels...as stated previously, they were in the low 200s, it went to the 170s for a while, then to 140s, yesterday morning I tested it again and it was 135!!! So I must be doing something right. And I will continue to snack, and eat, and hopefully lose the weight and get my vitals in order...and WITHOUT MEDICINE!!! This is just an update from me....oh, but I am still taking Lorezapam on occasion for stress, (I mentioned lots of stress in my life) and I hope to one day stop taking that too. I am so happy to have had the surgery, and my hope is for all cushies out there to get the dx they deserve and get their "repair" so they will no longer have Cushings! Renata
  8. Marisa

    March 29th 2010 - 7 weeks post op

    Well as you can tell it's been a while since I have blogged. I went through withdrawals from weaning off hydro and the body aches and pains were very painful. I have found ibuprofen helps. On March 17th I had the ACTH stim test and the next day my endo called and said my right adrenal was working, and I could stop taking the hydro. I had weaned down to 5mg a day. Even now though I get pains in my body still....especially in the evenings. If it gets bad I take ibuprofen again! So far so good. I have begun to lose weight, however so slowly. Only 4 lbs so far. 60 more to go. Oh well someday I will get there. It still hurts to type at the computer, and walk, from what I have been told, it takes a very long time for the body to 'adjust' to not having the loads of steroids running through it. I can testify to that one. Others who have been through a unilateral adrenalectomy have told me the same things. It just takes time. Well so far 7 weeks have passed, and I used to wonder what it would be like on the 'other side of cushings' well I'm here. So there has been time going by. Sleeping is okay, some nights are good, some not so good. But definately better than before surgery. Around July I plan on getting a saliva test done to check my cortisol levels throughout the day and night. That is one test that showed high mignight levels pre surgery for me. I keep forgetting to take my picture now, and then I can have an 'after' picture like everyone else. Note to self: must take this picture...ugh! Well just wanted to update. Renata
  9. Marisa

    Monday 22, Feb 2010

    Best night so far last night. took lorazepam and ibprofen and slept the most i have so far. Had a 2 and half hour nap today also. Wonderful feeling to sleep. so i guess i am ready and possibly on my way UP...? Just had to share the good news.
  10. Marisa

    Sunday Feb 21, 2010

    Well i am taking 20mg hydro in the AM and 15 hydro in the evening now. So far so good. taking ibuprofen for stiffness and soreness, and lorazepam to rest. I was taking some hydrocodone for pain but honestly, it makes me feel worse than why i am taking it. Ibuprofen does just fine. I still get dried out alot, needs lots to drink. My bp is great, and pulse is now staying under 100. Still having issues with blood sugar but will work on that next. I slept well last night, despite the soreness from turning over. And had an hour nap today. Much better. Even though when I woke up this morning I was feeling so bad wondered if hubby should take me back to the hospital? Endured the day and it actually was not as bad as it initially started. I am to go back to work March 1st. I hope this week proves to be a magical week and I feel like gangbustgers to go back ..... i really have no choice in this, I must go back or lose a weeks vacation in march, and lose my company paying my health insurance for march. Feb paycheck is already going to be short by a week and half. So you see my problem. Gotta get better FAST. Have an appt with endo on Thursday. We shall see what they have to say. I am 12 days post of but my left side of my chest/lung feels sore alot. especially when I take a deep breath. is this normal? i did have a left adrenalectomy. Anyone have any input please let me know. Thank you. Renata
  11. Marisa

    Thursday 18th Feb 2010

    Well last night was a terror. I could not sleep all night, and had pains that I guess were from not enough hydro. Although I did keep check on my bp and it was fine. today i took lorazepam and had a couple of naps. Trying to keep from getting sore....sometimes I wonder if I am healing or not? Is it my not being patient again???? Going crazy here..
  12. Marisa

    Feb 17, 2010

    Well so far so good I think. I did notice something special today! From the cushings I had a very red neck and chest, like a v-shape, before I knew it was cushings I thought it was a sunburn. Well guess what!!! It's gone! My skin is all the same color now. I was so shocked and happy. Yes I know it is one little symptom of cushings but its gone. I have lots of pains in my muscles in my chest, from coughing and possibly picking up stuff I should not. But I had this prior to surgery but its worse now. Feels that no matter what I pick up I pull those muscles. I know in time that will get better also. I plan on going back to work March 1st, and hope that I will be able to without a problem. It was a week ago Tuesday I had my surgery and now I can say I think everyday is getting better. Like I have said before, I do not have much patience with myself, but I am trying to learn No more cushings! Thats the main thing and I sure everyday things will be better and better! Just wanted to share this with everyone Renata
  13. Marisa

    Post Op 02-14-2010

    I'm back. Glad the surgery is behind me. The surgeon looked like he was so happy to know he did a good job. ? He was proud of himself. Was in intensive care from 2-9 to 2-11 then moved that evening to a regular room, then the surgeon comes in late that night and asks if I want to go home. Yes of course. So I was out three hours later. NO wheelchair either, I had to walk to the car right out of the hospital. Today is Sunday, last night I started having a fever, I know I have to stress dose and did so but was worrying I did not do it right. Guess I did as I am still here. My BP has been great, heart rate high until today I decided to eat quite a bit of salty chips until I could taste salt again, and my rate when to right under 100. Before this it was never under 100 but in the teens to lower 20s. I have pain today, cant sleep, wish I could. Last time I took pain meds was Thursday morning before they removed the morphine drip thing. After that I guess I had so much in my system still I was not in need of any. I am anemic, and have an appt with pcp tomorrow to get some blood work done. Been eating iron rich foods. Cant do much else. I am going from cold to hot and uncomfortable. I break the fever with ibuprofen before it gets too high, and I only have to double my steroid dose. So far so good. Fevers were last night and today. This evening I am clammy sweaty, warm but no fever. Incision area and left kidney area hurting some, guess I will get some pain medicine tomorrow. Right now I am taking normal dose morning 20mg hydro and between 3-4pm 5mg hydro. (this is normally when with fever I double that if the fever is within a certain range) I will update tomorrow after Dr. visit. I have to learn patience, I am 52 now and I guess do not heal as fast I remember But I think I am doing pretty good. Just wish I could sleep. Renata
  14. Marisa

    unilateral adrenalectomy

    Update on Renata Hi, I'm Renata's sister. She wanted me to let everyone know that her surgery went well.
  15. Marisa

    Got a pre op date

    They called me back, and schedule another pre op for Feb 8th. So I go there and stay there until the next day for surgery. I hope that nothing spoils it this time. I kept them up to date on what changes were happening to me and they never said anything. I hope the high and low bp wont affect things and the ekg, I had last time they didnt like so they gave me an echo, and I am guessing everything is fine to go. At least it was back then. Hopefully it will be again.
  16. Marisa

    Monday morning woes....

    Well thought about it this past weekend about my pre op I had done on Dec 17th. Surgery originally scheduled for Jan 6th, but was messed up by the hospital oversight in no putting my name on the list for surgery that day. I had to go back home. New date for surgery is Feb 9th, next Tuesday....so I call the surgeons office and ask if the date of Dec 17th pre op was ok for a Feb 9th surgery. OH NO she says, certainly not. Well why didnt anyone reschedule me?????? Did they forget I exist???? Such morons. So she says she will try to get info today regarding another pre op and call me back this morning. Do I think she will? I have no idea. Each day passing is closer to the date ...i just dont want that to screw it up again..... I cant take it anymore. So she also says "maybe they will do a bedside pre op" hmmmm, i dont think so because my pre op last time they didnt like my ekg and i had to have an ultrasound, and had to be called back from half way home to go back and have it done that day. Ducks in a row???? I dont think so. If we do not keep track of everything this is what happens. I thought I was being overly cautious, guess its good to be that way. I like being a preventer, so that I can make sure things go right ahead of time by avoiding things or making sure they get done. My sign on should have been The Preventer!!!!! Im mad, I want to roid out, and rage ....but I stay calm while speaking with them because being sweet get us further...but I hate being sweet in this situation, can we say BRING ON MORE STRESS PLEASE?????
  17. When I got home yesterday from work, I had a message on my phone from the surgeons assistant. First of all over a week ago I emailed the asst. with info on my crazy bp and blood sugar number...I had a few questions and never got a reply. This past Wednesday I called and asked to speak to the same assistant I email and they gave her my message which was: I wanted to know what the medic alert bracelet is supposed to say. Next I wanted to know where to obtain the emergency kit with hydro, or when will I get one. Those are the only two questions I had. My message machine at home had this reply. She stated who she was (remember too they know I work and have both a work phone and cell, but they call my house where I am not) then she proceeded to say "they do not have a prescription for the bracelets one normally orders them from the internet." Okay I know this, and of course did not get my answer. Now for the answer about the emergency kit with hydro, she says "you wont need any hydro after the surgery because you are not a bilateral adrenalectomy" okay this scares me a lot. I have no confidence in who is doing anything. And to leave a message like that without talking to me to make sure of what my questions were....need I say more. I dont know what to do as the day gets closer..... Cushings and too much cortisol, now worry more and more....how comforting.
  18. Marisa


    Well it's Friday today. I have one more week of work to go and a Monday before my surgery. Friday's are the most difficult, as all week I never get the sleep I need, and this morning I had a bad sinus headache. Had to stand in the hottest shower I could tolerate and make my headache go away. The changes in temperature here in Florida this year is so varied, everyone is having allergies and sinus problems as well as upper respiratory infections. I go around and spray our offices in our department, door knobs, keyboards, phones, light switches, just to try to keep the germs at bay. I am so tired today, and had that 'woozy' feeling on the way to work. Took bp and it was 154/94, not bad for me right now, and my blood sugar was 206. Only drank coffee with no sugar. The woozy feeling also makes me have a feeling of fear in my chest, so here it is Ativan/Lorazepam time again. With the palpitations and weird doom feeling that is the only way I can make it through the day. I wish so much I could stay home until my surgery but life does not let me, as I have not much time off built up to take off for my surgery. I will actually be taking leave without pay for about a week and a few days. (This is if I am able to go back to work March 1st, which is my goal, surgery is Feb 9th) I am hurting today, back of my neck, and head. I cant wait to post after the surgery and hopefully be able to tell you what is NOT hurting and all the positive things. Every time I get a congestion headache, or allergy sinus problem, the back of my neck where the skull is on both sides of my backbone, aches something fierce. At home I apply heat and it helps a lot. Today I am still reading about how to dose after surgery. Nervous about it and reading Gracie's postings and how confident she is about her BLA and her meds, gives me confidence but I just worry still. I will have one adrenal left, she is so poised and confident with both gone and is so positive in her postings. She should hire herself out as an assistant to all adrenal patients! post surgery. I take lots of vitamin C because I read it helps lower cortisol. But I still cannot get a good night's sleep! Waiting for after the surgery for that. My son is coming home this weekend, and he is the one I worry about cushings. His stretch marks, and lack of healthy sleep pattern make me concerned. A mother's love never goes on vacation, and I worry about him until I can get him tested. What a long trip that will be.
  19. Marisa


    I have to go to work everyday because I have to build up my time for time off for my surgery. I will still have to take Family Leave Medical Act for my time off as it will be without pay. But I will still have a job to come back to. Mondays are bad enough, but I have gained a bit of strength during the weekend when I get to take a little nap in the daytime. Nights are horrible as the cortisol levels are so high I wake up every hour on the hour or half hour, and get no rest. By the time Thursday gets here, I am utterly exhausted and then I think all day I have to come in tomorrow. Its killing me. I have one more week to do this and one more day then my surgery date. Can I make it? Sometimes I wonder if i will or not. I am foggy brained, look horrible, co workers can tell what type of night i had due to the way i walk and talk. Slowly, and sometime I dont say anything at all. Eyes half closed, body does not want to function, and my heart palpitations keep doing their thing, so I take ativan and the fatigue gets worse. Sometimes dizzy spells, and woozy spells....and I cannot even function. I begged to go home one day for fear I would pass out at work. Think? Concentrate? what is that? Did i used to know how to accomplish those two things? Relax is not in my vocabulary either, I guess after the surgery it will be a learned task. I hope I succeed. I am now concerned about having to get my emergency kit before I go to surgery, but from whom do I get it? And I read that I should have hydro and florinef (if needed) filled before my surgery. Also the emergency bracelet...but what should i have it say? I want to be prepared but really am at a loss. Like I need someone to tell me what to do since right now I dont seem to be able to think for myself. Any lists for me please let me know. Thank you in advance, Renata