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  1. 2 points
    Presented by Georgios A. Zenonos, MD Assistant Professor of Neurological Surgery Associate Director, Center for Skull Base Surgery University of Pittsburgh Medical Center 200 Lothrop Street, Pittsburgh PA, 15217 Presbyterian Hospital, Suite B400 Register Now! After registering you will receive a confirmation email containing information about joining the Webinar. Date: Wednesday July 1, 2020 Time: 3:00 PM Pacific Daylight Time, 6:00 PM Eastern Daylight Time
  2. 2 points
    Unfortunately a 4:30 pm cortisol test can't be used to diagnose or exclude Cushing's. The only useful blood measurement for cortisol would be a midnight one. You really need to do a 24 hour urinary cortisol test.
  3. 2 points
    Welcome, Ellie. I can't image how hard it would be to get a diagnosis (or not!) during these COVID times. Unfortunately, results from blood tests aren't going to be the answer - just a part of an answer. You need to get UFCs (urine free cortisol) Do you need to get a referral to an endo? They are the best to diagnose Cushing's - if you get one who is familar with testing. That's the important part. Not all endos "believe in Cushing's" which is incredible to me. Unfortunately, there's no real way of speeding a Cushing's diagnosis along. And, I don't think you'd want to (although I did when I was in the diagnosis phase!) You want to be absolutely sure that this is what you have AND the source - pituitary, adrenal, ectopic, steroid-induced... Best of luck to you and please keep us posted.
  4. 1 point
    Thank you so much for sharing your dad's story, Andy. What a sad, difficult one it is. I know when Dr. Cushing was originally testing people for Cushing's disease, he found some of his early patients in the circus (bearded woman, etc) and other patients have been in mental wards before their diagnosis. This disease, especially untreated, can really cause havoc in all aspects of a person's life. I hope you and your family have been able to find some peace since the original article.
  5. 1 point
    Family's Despair over Rare Disease Exclusive By Benjamin Parkes THE family of a Chippenham man who died of a rare hormonal disorder have told of the despair his illness caused before it was diagnosed. An inquest held in Flax Bourton on Tuesday ruled that John Goacher, 51, of Stonelea Close, died of natural causes on May 18 last year, after having surgery at Frenchay Hospital in Bristol. The operation was intended to ease the symptoms of Cushing's Disease, which included obesity, a rounded face, increased fat around the neck and thinning arms and legs. Cushing's is a disorder that floods the body with the cortisol hormone. It affects 10 in every million people each year. Most people affected are between 20 and 50 years old. It gave Mr Goacher high blood pressure, diabetes, muscle weakness and osteoporosis and also reduced his life expectancy to a matter of years if left untreated. But it was the psychological problems set off by the disease that caused the most anxiety. Before Cushing's Disease caused a raft of psychological problems, Mr Goacher was a senior reliability engineer for a top secret Government agency and used to travel to London to advise Government scientists on missile weapons. His wife Linda said: "John's personality completely changed and he did some very strange and destructive things. "We did not get much help or sympathy at first because we did not know that it was Cushing's. "His friends and family thought he was being deliberately troublesome and it put a great deal of stress on our family and friends. "He had violent episodes, smashing down doors and wrecking things, and was eventually sectioned because of his mental problems. "He used to say he felt like he was in a bubble where everything he did inside it seemed to be normal but to everyone outside the bubble he appeared to be losing his mind. "I did some research on the internet and discovered that Cushing's might be at the root of it and after a lot of pressure we finally got John referred." Mr Goacher was eventually diagnosed with a particularly aggressive form of the debilitating disease in February last year. He then had to face the stress of risky surgery to the malfunctioning pituitary gland inside Mr Goacher's skull. The operation performed by consultant neurosurgeon Richard Nelson initially yielded positive results but within days Mr Goacher's health took a turn for the worst. Speaking at the inquest, deputy coroner Anthony Woodburn said: "Without the operation Mr Goacher's life would have come to a distressing end quite quickly. "An infection occurred in his pituitary gland after surgery which cause the massive bleeding and subsequent heart attack that led to his death. "The underlying cause of this was an aggressive form of Cushing's Disease from which all the other problems stemmed." Mrs Goacher said: "I can't help feeling that so much pain could have been avoided if John had been diagnosed earlier." 7:34am Friday 27th April 2007
  6. 1 point
    Hi everybody! I am Andy Goacher (John Goacher's eldest son) The article itself is particularly badly written if I'm honest, so I would like to share my own account.. Dad was a kind, gentle man, incredibly gifted, logical, technical. A senior reliability engineer working rocket and missile systems... "Basically our father is a rocket scientist" me and my brother would joke.. He had been gaining weight and suffering health problems for some time before he got really ill. He ballooned a bit in his final years, but facially and in the abdomen as well as a fatty hump between the shoulders on his back. His legs and arms were always fairly normal looking.. He had a growing increasingly cantankerous in his later years, but nothing that seemed a major psychiatric cause for concern. One day he left for work, as normal, got to work, and collapsed that day while there. He couldn't be woken up by the paramedics, and was hospitalised. When he eventually woke up, it was as if he had suffered some kind of mental breakdown. He was saying strange things, and appeared to be suffering bouts of amnesia as well as paranoia. He escaped his ward I think several times, and at one point failed to recognise my mum. I was away finishing uni at the time, so most of this is how I remember hearing it.. He came home after a short stay in hospital and appeared to make good progress with doctors still thinking it was a mental breakdown or psychotic episode.. Then the truly terrifying bit... As if a very slow second wave hit, he began to show signs that something was wrong. His driving became increasingly scary (yes he was deemed safe to drive) his focus was off, his logic started to go, he began to buy things impulsively, and randomly, then buy the same thing again. He was slowly going baserk. Even when I visited, I knew something was seriously wrong and I was scared of him! We were all scared of him and what he might do next! It was like living with maniac, and he was completely oblivious! He could 100% not see anything wrong with himself, he couldn't even wire a plug properly (and he was a trained electronics engineer for goodness sake! As his wierd behaviour got slowly worse, it became apparent that certain triggers (such as my mum getting cross and saying something he didn't want to hear) would send him into a trance like state. I can only described this as altered consciousness. He would slump or fall, eyes closed, body limp. You could pinch him and get no response, lift his eyelids, slap him on the cheeks, but with no response. This would go on for minutes not seconds until you went to walk away saying something abrupt like 'OKAY WE ARE LEAVING NOW!' Just like that he would snap out of it. He would claim he was never out of it at all, and heard every word (even recounting what you had said during the episode) Of course every time the doctors visited this wouldn't happen at first, but eventually it did, and they were absolutely gobsmacked! He was then sectioned again and taken into psychiatric care where his behaviour continued to get more and more bizarre. He would escape from the Premesis and somehow manage to wander to the shops. We once had to drive up to help search for him.. we found him, with bags full of cracked eggs and other strange items. He grew a beard, began smoking, and continued to have frequent bouts of strange altered consciousness. The doctors were dumbfounded, which is why WE began frantically searching the internet for something, anything like it. We put all his previous symptoms in, and cushings/pituitary disorders kept coming up. The breakthrough was when my mother found a illustrations of a human with Cushing's disease along with a side and front profile of a woman with a severe case. Our mouths fell open... The diagrams were as if someone had sketched my father, and the woman looked like his identical twin! We took this to show the doctors, and that lead to his tests, scans and eventual diagnosis. In the end, with the right medication, we got dad back for a few months before the operation, albeit by now in poor physical health. By the time he went for his op, he could barely walk and I had to push him around in a wheelchair when I visited. He was just too weak to survive the op, and deteriorated afterwards. He died of massive nasal bleed from a major artery rupture. Tragically, the post op test results showed signs of his pituitary hormone levels returning to normal, but it just wasn't meant to be. My dad's demise was just so incredibly strange (even by Cushing's disease standards) with so many questions left unanswered, and perhaps there was something else at play other than just the Cushing's?? We'll never know, and we just try as family to go on remembering him as the brilliant and gifted man he was when he was well. I have typed my personal account up on Father's Day week in the hopes that it may help someone else out there one day.
  7. 1 point
    Dexamethasone, a cheap and widely used steroid, has become the first drug shown to be able to save lives among Covid-19 patients in what scientists hailed as a “major breakthrough”. Results of trials announced on Tuesday showed dexamethasone, which is used to reduce inflammation in other diseases, reduced death rates by around a third among the most severely ill Covid-19 patients admitted to hospital. The results suggest the drug should immediately become standard care in patients with severe cases of the pandemic disease, said the researchers who led the trials. “This is a result that shows that if patients who have Covid-19 and are on ventilators or are on oxygen are given dexamethasone, it will save lives, and it will do so at a remarkably low cost,” said Martin Landray, an Oxford University professor co-leading the trial, known as the RECOVERY trial. “It’s going to be very hard for any drug really to replace this, given that for less than 50 pounds ($63.26), you can treat eight patients and save a life,” he told reporters in an online briefing. His co-lead investigator, Peter Horby, said dexamethasone was “the only drug that’s so far shown to reduce mortality - and it reduces it significantly.” “It is a major breakthrough,” he said. “Dexamethasone is inexpensive, on the shelf, and can be used immediately to save lives worldwide.” There are currently no approved treatments or vaccines for Covid-19, the disease caused by the new coronavirus which has killed more than 431,000 globally. Saving ‘countless lives’ The RECOVERY trial compared outcomes of around 2,100 patients who were randomly assigned to get the steroid, with those of around 4,300 patients who did not get it. The results suggest that one death would be prevented by treatment with dexamethasone among every eight ventilated Covid-19 patients, Landray said, and one death would be prevented among every 25 Covid-19 patients that received the drug and are on oxygen. Among patients with Covid-19 who did not require respiratory support, there was no benefit from treatment with dexamethasone. “The survival benefit is clear and large in those patients who are sick enough to require oxygen treatment, so dexamethasone should now become standard of care in these patients,” Horby said. Nick Cammack, a expert on Covid-19 at the Wellcome Trust global health charity, said the findings would “transform the impact of the Covid-19 pandemic on lives and economies across the world”. “Countless lives will be saved globally,” he said in a statement responding to the results. The RECOVERY trial was launched in April as a randomised clinical trial to test a range of potential treatments for Covid-19, including low-dose dexamethasone and the malaria drug hydoxycholoroquine. The hydroxychloroquine arm was halted earlier this month after Horby and Landray said results showed it was “useless” at treating Covid-19 patients. Global cases of infection with the novel coronavirus have reached over 8 million, according to a Reuters tally, and more than 434,000 people have died after contracting the virus, the first case if which was reported in China in early January. From https://www.cnbc.com/2020/06/16/steroid-dexamethasone-reduces-deaths-from-severe-covid-19-trial.html
  8. 1 point
    Presented by Georgios A. Zenonos, MD Assistant Professor of Neurological Surgery Associate Director, Center for Skull Base Surgery University of Pittsburgh Medical Center 200 Lothrop Street, Pittsburgh PA, 15217 Presbyterian Hospital, Suite B400 Register Now! After registering you will receive a confirmation email containing information about joining the Webinar. Date: Wednesday July 1, 2020 Time: 3:00 PM Pacific Daylight Time, 6:00 PM Eastern Daylight Time
  9. 1 point
    https://doi.org/10.1016/S2213-8587(20)30215-1 Over the past few months, COVID-19, the pandemic disease caused by severe acute respiratory syndrome coronavirus 2, has been associated with a high rate of infection and lethality, especially in patients with comorbidities such as obesity, hypertension, diabetes, and immunodeficiency syndromes.1 These cardiometabolic and immune impairments are common comorbidities of Cushing's syndrome, a condition characterised by excessive exposure to endogenous glucocorticoids. In patients with Cushing's syndrome, the increased cardiovascular risk factors, amplified by the increased thromboembolic risk, and the increased susceptibility to severe infections, are the two leading causes of death.2 In healthy individuals in the early phase of infection, at the physiological level, glucocorticoids exert immunoenhancing effects, priming danger sensor and cytokine receptor expression, thereby sensitising the immune system to external agents.3 However, over time and with sustained high concentrations, the principal effects of glucocorticoids are to produce profound immunosuppression, with depression of innate and adaptive immune responses. Therefore, chronic excessive glucocorticoids might hamper the initial response to external agents and the consequent activation of adaptive responses. Subsequently, a decrease in the number of B-lymphocytes and T-lymphocytes, as well as a reduction in T-helper cell activation might favour opportunistic and intracellular infection. As a result, an increased risk of infection is seen, with an estimated prevalence of 21–51% in patients with Cushing's syndrome.4 Therefore, despite the absence of data on the effects of COVID-19 in patients with Cushing's syndrome, one can make observations related to the compromised immune state in patients with Cushing's syndrome and provide expert advice for patients with a current or past history of Cushing's syndrome. Fever is one of the hallmarks of severe infections and is present in up to around 90% of patients with COVID-19, in addition to cough and dyspnoea.1 However, in active Cushing's syndrome, the low-grade chronic inflammation and the poor immune response might limit febrile response in the early phase of infection.2 Conversely, different symptoms might be enhanced in patients with Cushing's syndrome; for instance, dyspnoea might occur because of a combination of cardiac insufficiency or weakness of respiratory muscles.2 Therefore, during active Cushing's syndrome, physicians should seek different signs and symptoms when suspecting COVID-19, such as cough, together with dysgeusia, anosmia, and diarrhoea, and should be suspicious of any change in health status of their patients with Cushing's syndrome, rather than relying on fever and dyspnoea as typical features. The clinical course of COVID-19 might also be difficult to predict in patients with active Cushing's syndrome. Generally, patients with COVID-19 and a history of obesity, hypertension, or diabetes have a more severe course, leading to increased morbidity and mortality.1 Because these conditions are observed in most patients with active Cushing's syndrome,2 these patients might be at an increased risk of severe course, with progression to acute respiratory distress syndrome (ARDS), when developing COVID-19. However, a key element in the development of ARDS during COVID-19 is the exaggerated cellular response induced by the cytokine increase, leading to massive alveolar–capillary wall damage and a decline in gas exchange.5 Because patients with Cushing's syndrome might not mount a normal cytokine response,4 these patients might parodoxically be less prone to develop severe ARDS with COVID-19. Moreover, Cushing's syndrome and severe COVID-19 are associated with hypercoagulability, such that patients with active Cushing's syndrome might present an increased risk of thromboembolism with COVID-19. Consequently, because low molecular weight heparin seems to be associated with lower mortality and disease severity in patients with COVID-19,6 and because anticoagulation is also recommended in specific conditions in patients with active Cushing's syndrome,7 this treatment is strongly advised in hospitalised patients with Cushing's syndrome who have COVID-19. Furthermore, patients with active Cushing's syndrome are at increased risk of prolonged duration of viral infections, as well as opportunistic infections, particularly atypical bacterial and invasive fungal infections, leading to sepsis and an increased mortality risk,2 and COVID-19 patients are also at increased risk of secondary bacterial or fungal infections during hospitalisation.1 Therefore, in cases of COVID-19 during active Cushing's syndrome, prolonged antiviral treatment and empirical prophylaxis with broad-spectrum antibiotics1, 4 should be considered, especially for hospitalised patients (panel). Panel Risk factors and clinical suggestions for patients with Cushing's syndrome who have COVID-19 Reduction of febrile response and enhancement of dyspnoea Rely on different symptoms and signs suggestive of COVID-19, such as cough, dysgeusia, anosmia, and diarrhoea. Prolonged duration of viral infections and susceptibility to superimposed bacterial and fungal infections Consider prolonged antiviral and broad-spectrum antibiotic treatment. Impairment of glucose metabolism (negative prognostic factor) Optimise glycaemic control and select cortisol-lowering drugs that improve glucose metabolism. Hypertension (negative prognostic factor) Optimise blood pressure control and select cortisol-lowering drugs that improve blood pressure. Thrombosis diathesis (negative prognostic factor) Start antithrombotic prophylaxis, preferably with low-molecular-weight heparin treatment. Surgery represents the first-line treatment for all causes of Cushing's syndrome,8, 9 but during the pandemic a delay might be appropriate to reduce the hospital-associated risk of COVID-19, any post-surgical immunodepression, and thromboembolic risks.10 Because immunosuppression and thromboembolic diathesis are common Cushing's syndrome features,2, 4 during the COVID-19 pandemic, cortisol-lowering medical therapy, including the oral drugs ketoconazole, metyrapone, and the novel osilodrostat, which are usually effective within hours or days, or the parenteral drug etomidate when immediate cortisol control is required, should be temporarily used.9 Nevertheless, an expeditious definitive diagnosis and proper surgical resolution of hypercortisolism should be ensured in patients with malignant forms of Cushing's syndrome, not only to avoid disease progression risk but also for rapidly ameliorating hypercoagulability and immunospuppression;9 however, if diagnostic procedures cannot be easily secured or surgery cannot be done for limitations of hospital resources due to the pandemic, medical therapy should be preferred. Concomitantly, the optimisation of medical treatment for pre-existing comorbidities as well as the choice of cortisol-lowering drugs with potentially positive effects on obesity, hypertension, or diabates are crucial to improve the eventual clinical course of COVID-19. Once patients with Cushing's syndrome are in remission, the risk of infection is substantially decreased, but the comorbidities related to excess glucocorticoids might persist, including obesity, hypertension, and diabetes, together with thromboembolic diathesis.2 Because these are features associated with an increased death risk in patients with COVID-19,1 patients with Cushing's syndrome in remission should be considered a high-risk population and consequently adopt adequate self-protection strategies to minimise contagion risk. In conclusion, COVID-19 might have specific clinical presentation, clinical course, and clinical complications in patients who also have Cushing's syndrome during the active hypercortisolaemic phase, and therefore careful monitoring and specific consideration should be given to this special, susceptible population. Moreover, the use of medical therapy as a bridge treatment while waiting for the pandemic to abate should be considered. RP reports grants and personal fees from Novartis, Strongbridge, HRA Pharma, Ipsen, Shire, and Pfizer; grants from Corcept Therapeutics and IBSA Farmaceutici; and personal fees from Ferring and Italfarmaco. AMI reports non-financial support from Takeda and Ipsen; grants and non-financial support from Shire, Pfizer, and Corcept Therapeutics. BMKB reports grants from Novartis, Strongbridge, and Millendo; and personal fees from Novartis and Strongbridge. AC reports grants and personal fees from Novartis, Ipsen, Shire, and Pfizer; personal fees from Italfarmaco; and grants from Lilly, Merck, and Novo Nordisk. All other authors declare no competing interests. References 1 P Kakodkar, N Kaka, MN Baig A comprehensive literature review on the clinical presentation, and management of the pandemic coronavirus disease 2019 (COVID-19) Cureus, 12 (2020), Article e7560 View Record in ScopusGoogle Scholar 2 R Pivonello, AM Isidori, MC De Martino, J Newell-Price, BMK Biller, A Colao Complications of Cushing's syndrome: state of the art Lancet Diabetes Endocrinol, 4 (2016), pp. 611-629 ArticleDownload PDFView Record in ScopusGoogle Scholar 3 DW Cain, JA Cidlowski Immune regulation by glucocorticoids Nat Rev Immunol, 17 (2017), pp. 233-247 CrossRefView Record in ScopusGoogle Scholar 4 V Hasenmajer, E Sbardella, F Sciarra, M Minnetti, AM Isidori, MA Venneri The immune system in Cushing's syndrome Trends Endocrinol Metab (2020) published online May 6, 2020. DOI:10.1016/j.tem.2020.04.004 Google Scholar 5 Q Ye, B Wang, J Mao The pathogenesis and treatment of the ‘Cytokine Storm’ in COVID-19 J Infect, 80 (2020), pp. 607-613 ArticleDownload PDFView Record in ScopusGoogle Scholar 6 N Tang, H Bai, X Chen, J Gong, D Li, Z Sun Anticoagulant treatment is associated with decreased mortality in severe coronavirus disease 2019 patients with coagulopathy J Thromb Haemost, 18 (2020), pp. 1094-1099 CrossRefView Record in ScopusGoogle Scholar 7 AM Isidori, M Minnetti, E Sbardella, C Graziadio, AB Grossman Mechanisms in endocrinology: the spectrum of haemostatic abnormalities in glucocorticoid excess and defect Eur J Endocrinol, 173 (2015), pp. R101-R113 View Record in ScopusGoogle Scholar 8 LK Nieman, BM Biller, JW Findling, et al.Treatment of Cushing's syndrome: an endocrine society clinical practice guideline J Clin Endocrinol Metab, 100 (2015), pp. 2807-2831 CrossRefView Record in ScopusGoogle Scholar 9 R Pivonello, M De Leo, A Cozzolino, A Colao The treatment of Cushing's disease Endocr Rev, 36 (2015), pp. 385-486 CrossRefView Record in ScopusGoogle Scholar 10 J Newell-Price, L Nieman, M Reincke, A Tabarin Endocrinology in the time of COVID-19: management of Cushing's syndrome Eur J Endocrinol (2020) published online April 1. DOI:10.1530/EJE-20-0352 Google Scholar View Abstract From https://www.thelancet.com/journals/landia/article/PIIS2213-8587(20)30215-1/fulltext
  10. 1 point
    J Clin Endocrinol Metab . 2003 Apr;88(4):1554-8. doi: 10.1210/jc.2002-021518. Francesca Pecori Giraldi 1, Mirella Moro, Francesco Cavagnini, Study Group on the Hypothalamo-Pituitary-Adrenal Axis of the Italian Society of Endocrinology Affiliations PMID: 12679438 DOI: 10.1210/jc.2002-021518 Abstract Cushing's disease (CD) presents a marked female preponderance, but whether this skewed gender distribution has any relevance to the presentation and outcome of CD is not known. The aim of the present study was the comparison of clinical features, biochemical indices of hypercortisolism, and surgical outcome among male and female patients with CD. The study population comprised 280 patients with CD (233 females, 47 males) collected by the Italian multicentre study. Epidemiological data, frequency of clinical signs and symptoms, urinary free cortisol (UFC), plasma ACTH and cortisol levels, responses to dynamic testing, and surgical outcome were compared in female and male patients. Male patients with CD presented at a younger age, compared with females (30.5 +/- 1.93 vs. 37.1 +/- 0.86 yr, P < 0.01), with higher UFC and ACTH levels (434.1 +/- 51.96 vs. 342.1 +/- 21.01% upper limit of the normal range for UFC, P < 0.05; 163.9 +/- 22.92 vs. 117.7 +/- 9.59% upper limit of the normal range for ACTH, P < 0.05). No difference in ACTH and cortisol responses to CRH, gradient at inferior petrosal sinus sampling, and cortisol inhibition after low-dose dexamethasone was recorded between sexes. In contrast, the sensitivity of the high-dose dexamethasone test was significantly lower in male than in female patients. Of particular interest, symptoms indicative of hypercatabolic state were more frequent in male patients; indeed, males presented a higher prevalence of osteoporosis, muscle wasting, striae, and nephrolitiasis. Conversely, no symptom was more frequent in female patients with CD. Patients with myopathy, hypokalemia, and purple striae presented significantly higher UFC levels, compared with patients without these symptoms. Lastly, in male patients, pituitary imaging was more frequently negative and immediate and late surgical outcome less favorable. In conclusion, CD appeared at a younger age and with a more severe clinical presentation in males, compared with females, together with more pronounced elevation of cortisol and ACTH levels. Furthermore, high-dose dexamethasone suppression test and pituitary imaging were less reliable in detecting the adenoma in male patients, further burdening the differential diagnosis with ectopic ACTH secretion. Lastly, the postsurgical course of the disease carried a worse prognosis in males. Altogether, these findings depict a different pattern for CD in males and females. From https://pubmed.ncbi.nlm.nih.gov/12679438/
  11. 1 point
    How sad. He never got to know life after Cushings, either.
  12. 1 point
    Thanks for posting this Robin. The poor unfortunate man and his family - it is dreadful. And so very descriptive - makes you wish you could have been there for him to help.
  13. 1 point
    Boy Oh Boy this one scares the H- E DOUBLE TOOTHPICKS out of me, it hits so close to MY home! Lisa I think I will wear the Xtra gear this week!
  14. 1 point
    Thanks for sharing this story Robin. Kinda tugs on the ol' strings doesn't it.
  15. 1 point
    MK---I think things are much the same way here---the doctor's look for the obvious---and just treat the symptoms---which doesn't always save any of us money...sadly, some pay with their lives---as you've indicated. Healthy people are productive people---that should be what we're aiming for...not trying to save a nickel...
  16. 1 point
    Thanks for sharing this story... although it is so sad!! Especially when we know something could have helped this man so much sooner. Thanks for sharing!! I guess even though these stories are awful to read, they spread awareness... which is exactly what we need... Paige
  17. 1 point
    Man oh man . . . . . when will they ever get it. It is so sad and scary to read of such a tragedy. And to read his symptoms . . . . . boy does that hit home. Thanks for posting Robin. Amy
  18. 1 point
    Wow, What a heart wrenching story. I think we all must have a double dose of empathy when we read about the trials of another cushings patient. I agree that publishing the story will really help raise awareness. It also makes me even more resolved to fight and encourage others to fight diligently to get a diagnosis and treatment plan as soon as possible!!!! Time is not our friend with this disease! Gina
  19. 1 point
    This must be so devastating for his family, but I'm glad they are bringing this disease to public view. It makes me more thankful that I saw a GP who was able to put all my symptoms together & immediately referred me. This is not always the case over here. Most GP's treat symptoms, they do not look for an underlying cause, that's the way it is over here, they are constantly under pressure to reduce the costs to the NHS, so any referral to a specialist has to be for a DAMNED GOOD REASON! For diagnosis they look for the lowest common denominator, this goes for all diseases, the simplest illness is the one they DX. My father was DX'd with asthma at 62, he went on to have a stroke, then passed away suddenly with a heart-attack at 69. It turned out, when he was opened-up, he didn't have asthma at all, his lungs were fine, his arteries were clogged which caused his breathing difficulties, and he could have had an operation to resolve this. My father-in-law died from pneumonia, because when he had a chest x-ray, they said he had a massive cancerous lung tumour which was inoperable, so didn't offer any kind of treatment. When he was opened up, there was no tumour, he also died needlessly. That's just the way it is over here, it varies from region to region though, we call it the Postcode Lottery, it's difficult to see how it will ever change. Melanie XXX
  20. 1 point
    NOT that it would help this family, per se, but my advice would be to SUE SUE SUE SUE SUE -- if only to hold his former doctors responsible for their negligence. If we keep taking a passive approach, then there will NEVER be any accountability to properly test for this disease when the symptoms are right there in front of the noses of so many prior medical professionals! I am not suggesting anything I don't plan to do myself. If my own lawsuit will force this one single repro-endo practice to more aggresively test (or at least refer out) potential Cushing's patients, then it will save lives. Literally!
  21. 1 point
    Robin--- What a heart-breaking experience for the family to have to endure---but how courageous of them to share it with others. One of the passages---"He used to say he felt like he was in a bubble where everything he did inside it seemed to be normal but to everyone outside the bubble he appeared to be losing his mind." really hit me like a ton of bricks---this is the best description of something that happened to me a couple of times... If and when I ever get a diagnosis, I'm sending a copy of this article to my "former" doctors, who did not and could not help me when I was most vulnerable. Thanks for sharing this!
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