On April 8th, people from around the world unite in support of Cushing’s Disease Awareness Day.
In this animated video, learn more about Cushing’s disease, including the mechanism of disease, clinical manifestations, symptoms and diagnosis challenges.
Filed under: adrenal, Cushing, Cushing's, Diagnostic Testing, pituitary, Treatments | Tagged: Cushing's Awareness Day, diagnosis, symptoms, video | Leave a comment »
On Becoming Empowered. Adapted from my blog post Participatory Medicine
This is kind of a “cheat” post since it’s a compilation of other posts, web pages, message board posts and some original thoughts. I wrote it to submit to Robin’s Grand Rounds, hosted on her blog.
For all of my early life, I was the good, compliant, patient. I took whatever pills the doctor prescribed, did whatever tests h/she (most always a he) wrote for. Believed that whatever he said was the absolute truth. He had been to med school. He knew what was wrong with me even though he didn’t live in my body 24/7 and experience what I did.
I know a lot of people are still like this. Their doctor is like a god to them. He can do no wrong – even if they don’t feel any better after treatment, even if they feel worse. “But the doctor said…”
Anyway, I digress.
All this changed for me in 1983.
At first I noticed I’d stopped having my periods and, of course, I thought I was pregnant. I went to my Gynecologist who had no explanation. Lots of women lose their periods for a variety of reasons so no one thought that this was really significant.
Then I got really tired, overly tired. I would take my son to a half hour Choir rehearsal and could not stay awake for the whole time. I would lie down in the back of the van, set an alarm and sleep for the 30 minutes.
A whole raft of other symptoms started appearing – I grew a beard (Hirsuitism), gained weight even though I was on Weight Watchers and working out at the gym nearly every day, lost my period, everything hurt, got what is called a “moon face” and a “buffalo hump” on the back of my neck. I also got stretch marks. I was very depressed but it’s hard to say if that was because of the hormone imbalance or because I felt so bad and no one would listen to me.
I came across a little article in the Ladies Home Journal magazine which said “If you have these symptoms…ask your doctor about Cushing’s”. After that, I started reading everything I could on Cushing’s and asking my doctors. Due to all my reading at the library and medical books I bought, I was sure I had Cushing’s but no one would believe me. Doctors would say that Cushing’s Disease is too rare, that I was making this up and that I couldn’t have it.
I asked doctors for three years – PCP, gynecologist, neurologist, podiatrist – all said the now-famous refrain. It’s too rare. You couldn’t have Cushing’s. I kept persisting in my reading, making copies of library texts even when I didn’t understand them, keeping notes. I just knew that someone, somewhere would “discover” that I had Cushing’s.
My husband was on the doctors’ sides. He was sure it was all in my mind (as opposed to all in my head!) and he told me to just think “happy thoughts” and it would all go away.
A Neurologist gave me Xanax. Since he couldn’t see my tumor with his Magnetic Resonance Imaging (MRI) machine there was “no possibility” that it existed. Boy was he wrong!
Later in 1986 I started bruising incredibly easily. I could touch my skin and get a bruise. On New Year’s Day of 1987 I started bleeding under the skin. My husband made circles around the outside perimeter each hour with a marker, like the rings of a tree. When I went to my Internist the next day he was shocked at the size. He now thought I had a blood disorder so he sent me to a Hematologist/Oncologist.
Fortunately, the Hematologist/Oncologist ran a twenty-four hour urine test and really looked at me. Both he and his partner recognized that I had Cushing’s. Of course, he was sure that he did the diagnosis. No matter that I had been pursuing this with other doctors for 3 years.
It was not yet determined if it was Cushing’s Disease (Pituitary) or Syndrome (Adrenal). However, he couldn’t help me any further so the Hematologist referred me to an Endocrinologist.
The Endocrinologist, of course, didn’t trust the other tests I had had done so I was back to square one. He ran his own multitude of tests. He had to draw blood at certain times like 9 AM. and 5 PM. There was a dexamethasone suppression test where I took a pill at 10 p.m. and gave blood at 9 am the next day. I collected gallons of urine in BIG boxes (Fun in the fridge!). Those were from 6 a.m. to 6 a.m. to be delivered to his office by 9 a.m. same day. I was always worried that I’d be stopped in rush hour and the police would ask about what was in that big container. I think I did those for a week. He also did standard neurological tests and asked lots of questions.
When the endo confirmed that I had Cushing’s in 1987 he sent me to a local hospital where they repeated all those same tests for another week and decided that it was not my adrenal gland (Cushing’s Syndrome) creating the problem. The doctors and nurses had no idea what to do with me, so they put me on the brain cancer ward.
When I left this hospital after a week, we didn’t know any more than we had before.
As luck would have it, NIH (National Institutes of Health, Bethesda, Maryland) was doing a clinical trial of Cushing’s. I live in the same area as NIH so it was not too inconvenient but very scary at first to think of being tested there. At that time I only had a choice of NIH, Mayo Clinic and a place in Quebec to do this then-rare pituitary surgery called a Transsphenoidal Resection. I chose NIH – closest and free. After I was interviewed by the Doctors there, I got a letter that I had been accepted into the clinical trial. The first time I was there was for 6 weeks as an inpatient. More of the same tests.
There were about 12 of us there and it was nice not to be alone with this mystery disease. Many of these Cushies (mostly women) were getting bald, couldn’t walk, having strokes, had diabetes. One was blind, one had a heart attack while I was there. Towards the end of my testing period, I was looking forward to the surgery just to get this whole mess over with. While I was at NIH, I was gaining about a pound a day!
The MRI still showed nothing, so they did a Petrosal Sinus Sampling Test. That scared me more than the prospect of surgery. (This test carries the risk of stroke and uncontrollable bleeding from the incision points.) Catheters were fed from my groin area to my pituitary gland and dye was injected. I could watch the whole procedure on monitors. I could not move during this test or for several hours afterwards to prevent uncontrolable bleeding from a major artery. The test did show where the tumor probably was located. Also done were more sophisticated dexamethasone suppression tests where drugs were administered by IV and blood was drawn every hour (they put a heplock in my arm so they don’t have to keep sticking me). I got to go home for a weekend and then went back for the surgery – the Transsphenoidal Resection. I fully expected to die during surgery (and didn’t care if I did) so I signed my will and wrote last letters to those I wanted to say goodbye to. During the time I was home just before surgery, a college classmate of mine (I didn’t know her) did die at NIH of a Cushing’s-related problem. I’m so glad I didn’t find out until a couple months later!
November 3, 1987, the surgeon, Dr. Ed Oldfield, cut the gum above my front teeth under my upper lip so there is no scar. He used tiny tools and microscopes. My tumor was removed successfully. In some cases (not mine) the surgeon uses a plug of fat from the abdomen to help seal the cut. Afterwards, I was in intensive care overnight and went to a neurology ward for a few days until I could walk without being dizzy. I had some major headaches for a day or two but they gave me drugs (morphine) for those. Also, I had cotton plugs in my nostrils. It was a big day when they came out. I had diabetes insipidus (DI) for a little while, but that went away by itself – thank goodness!
I had to use a foam product called “Toothies” to brush my teeth without hitting the incision. Before they let me go home, I had to learn to give myself an injection in my thigh. They sent me home with a supply of injectible cortisone in case my level ever fell too low (it didn’t). I was weaned gradually off cortisone pills (scary). I now take no medications. I had to get a Medic Alert bracelet. I will always need to tell medical staff when I have any kind of procedure – the effects of my excess cortisone will remain forever.
I went back to the NIH for several follow-up visits of a week each where they did all the blood and urine testing again. After a few years NIH set me free. Now I go to my “outside” endocrinologist every year for the dexamethasone suppression test, 24-hour urine and regular blood testing.
As I get further away from my surgery, I have less and less chance that my tumor will grow back. I have never lost all the weight I gained and I still have the hair on my chin but most of my other symptoms are gone. I am still and always tired and need a nap most days. I do not, however, still need to take whole days off just to sleep.
I consider myself very lucky that I was treated before I got as bad as some of the others on my floor at NIH but think it is crazy that these symptoms are not taken seriously by doctors.
My story goes on and if you’re interested some is on this blog and some is here:
Forbes Magazine | MaryO’s bio | Cushing’s and Cancer Blog | Guest Speakers | Interview Archive 1/3/08 | Cushing’s Awareness Day Testimonial Archive |
Because of this experience in getting a Cushing’s diagnosis – and later, a prescription for growth hormone – I was concerned that there were probably other people not being diagnosed with Cushing’s. When I searched online for Cushing’s, all the sites that came up were for dogs and horses with Cushing’s. Not what I was looking for!
In July of 2000, I was talking with my dear friend Alice, who ran a wonderful menopause site, Power Surge, wondering why there weren’t many support groups online (OR off!) for Cushing’s. This thought percolated through my mind for a few hours and I realized that maybe this was my calling. Maybe I should be the one to start a network of support for other “Cushies” to help them empower themselves.
I wanted to educate others about the awful disease that took doctors years of my life to diagnose and treat – even after I gave them the information to diagnose me. I didn’t want anyone else to suffer for years like I did. I wanted doctors to pay more attention to Cushing’s disease.
The first website (http://www.cushings-help.com) went “live” July 21, 2000. It was just a single page of information. The message boards began September 30, 2000 with a simple message board which then led to a larger one, and a larger. Today, in 2016, we have over 12 thousand members and many others on Facebook. Some “rare disease”!
The message boards are now very active and we have weekly online text chats, weekly live interviews, local meetings, conferences, email newsletters, a clothing exchange, a Cushing’s Awareness Day Forum, podcasts, phone support and much more. Because I wanted to spread the word to others not on “the boards” we have extended out to social networking sites – twitter groups, facebook groups, interviews, websites, chat groups, LinkedIn, Tumblr, Pinterest and much, much more.
People are becoming more empowered and participating in their own diagnoses, testing and treatment. This have changed a lot since 1983!
When I had my Cushing’s nearly 30 years ago, I never thought that I would meet another Cushing’s patient in real life or online. Back then, I’d never even been aware that there was anything like an “online”. I’m so glad that people struggling with Cushing’s today don’t have to suffer anymore thinking that they’re the only one who deals with this.
Because of my work on the websites – and, believe me it is a ton of work! – I have had the honor of meeting over a hundred other Cushies personally at local meetings, conferences, at NIH (the National Institutes of Health in Bethesda, MD where I had my final diagnosis and surgery). It occurred to me once that this is probably more than most endocrinologists will ever see in their entire career. I’ve also talked to countless others on the phone. Amazing for a “rare” disease!
I don’t know what pushed me in 1983, how I got the confidence and self-empowerment to challenge these doctors and their non-diagnoses over the years. I’m glad that I didn’t suffer any longer than I did and I’m glad that I have a role in helping others to find the medical help that they need.
What do *YOU* think? How are you becoming empowered?
Filed under: Clinical trials, Cushing's, Diagnostic Testing, pituitary, Rare Diseases, symptoms, Treatments | Tagged: awareness, buffalo hump, Cancer, Cushing's, Cushing's Awareness Challenge 2016, Cushing's Help, Dr. Edward Oldfield, Facebook, hirsuitism, Ladies Home Journal, LinkedIn, MaryO, message boards, moon face, MRI, NIH, Petrosal Sinus Sampling, pituitary, surgery, transsphenoidal, Tumblr, tumor, Twitter, website, weight | Leave a comment »
Alder BioPharmaceuticals, Inc. (“Alder”) (NASDAQ:ALDR), today announced that preclinical data on ALD1613, its anti-adrenocorticotropic hormone (ACTH) antibody for the treatment of congenital adrenal hyperplasia (CAH) and Cushing’s disease, were presented today by Andrew L. Feldhaus, Ph.D., in a poster presentation at ENDO 2016, the Endocrine Society’s 98th Annual Meeting in Boston, Mass. The presentation entitled “A Novel Anti-ACTH Antibody (ALD1613) Neutralizes ACTH Activity and Reduces Glucocorticoids in Rats and Nonhuman Primates” was presented as a late-breaking abstract.
Key Points:
Quote:
Randall C. Schatzman, Ph.D., President and Chief Executive Officer of Alder, said, “Existing therapeutic options for patients with congenital adrenal hyperplasia and Cushing’s disease comprise treatments that provide limited disease control and involve significant side effects. We believe these limitations indicate a clear need for new therapies such as ALD1613, which targets ACTH to diminish the overproduction of cortisol. The data presented today demonstrate the capacity of ALD1613 to reduce corticosteroid levels in preclinical settings. We intend to use these studies as part of an IND filing that we plan to submit to the FDA in the second half of 2016.”
Filed under: Clinical trials, Cushing's, Treatments | Tagged: ACTH, adrenal, ALD1613, CAH, Congenital adrenal hyperplasia, corticosterone, cortisol, Cushing's Disease, drugs, medications, meds, plasma corticosterone, treatments | Leave a comment »
Children with Cushing syndrome may be at higher risk for suicide as well as for depression, anxiety and other mental health conditions long after their disease has been successfully treated, according to a study by researchers at the National Institutes of Health.
Cushing syndrome results from high levels of the hormone cortisol. Long-term complications of the syndrome include obesity, diabetes, bone fractures, high blood pressure, kidney stones and serious infections. Cushing’s syndrome may be caused by tumors of the adrenal glands or other parts of the body that produce excess cortisol. It also may be caused by a pituitary tumor that stimulates the adrenal glands to produce high cortisol levels. Treatment usually involves stopping excess cortisol production by removing the tumor.
“Our results indicate that physicians who care for young people with Cushing syndrome should screen their patients for depression-related mental illness after the underlying disease has been successfully treated,” said the study’s senior author, Constantine Stratakis, D(med)Sci, director of the Division of Intramural Research at NIH’s Eunice Kennedy Shriver National Institute of Child Health and Human Development. “Patients may not tell their doctors that they’re feeling depressed, so it’s a good idea for physicians to screen their patients proactively for depression and related conditions.”
Cushing syndrome may affect both adults and children. A recent study estimated that in the United States, there are 8 cases of Cushing syndrome per 1 million people per year.
The researchers published their findings in the journal Pediatrics. They reviewed the case histories of all children and youth treated for Cushing syndrome at NIH from 2003 to 2014, a total of 149 patients. The researchers found that, months after treatment, 9 children (roughly 6 percent) had thoughts of suicide and experienced outbursts of anger and rage, depression, irritability and anxiety. Of these, 7 experienced symptoms within 7 months of their treatment.
Two others began experiencing symptoms at least 48 months after treatment.
The authors noted that children with Cushing syndrome often develop compulsive behaviors and tend to become over-achievers in school. After treatment, however, they then become depressed and anxious. This is in direct contrast to adults with Cushing syndrome, who tend to become depressed and anxious before treatment and gradually overcome these symptoms after treatment.
The authors stated that health care providers might try to prepare children with Cushing syndrome before they undergo treatment, letting them know that their mood may change after surgery and may not improve for months or years. Similarly, providers should consider screening their patients periodically for suicide risk in the years following their treatment.
Filed under: adrenal, Cushing's, pituitary, symptoms, Treatments | Tagged: adrenal, anxiety, blood pressure, bone fractures, children, cortisol, Cushing Syndrome, depression, diabetes, Dr. Constantine Stratakis, infection, kidney stones, National Institutes of Health, NIH, obesity, pituitary, suicide, tumor | Leave a comment »
The patient had discovered his condition by chance in Quetta last year.
A team of city-based surgeons has performed a sophisticated surgery on a young Pakistani national to remove a pituitary tumour.
Bakhtiyar Khan, a 30-year-old Pakistani national from the Talli village in Sibi, Balochistan, underwent the surgery here a few days ago.
The surgery was performed by Dr. T.N. Janakiraman, skull base surgeon and managing director, Royal Pearl Hospital and Research Institute, Dr. Uday Chanukya, Dr. Prayatna Kumar, skull base surgeons, and Dr. Balamurugan, anaesthesiologist.
The tumour, in the cavernous sinus — a large collection of thin-walled veins creating a cavity bordered by the temporal bone of the skull and the sphenoid bone in the head, was removed through endoscopic surgery.
“Normally surgeons go through the skull and brain to excise the tumour with the help of surgical microscopic glasses. But this doesn’t ensure the removal of the entire tumour, which is why radiation is recommended after the operation,” Dr. Janakiraman told The Hindu .
“In Bakhtiyar’s case, the tumour had gone into the cavernous sinus. We used his nasal cavity as the entry point, and brought the tumour out through the nose as well. This is a scar-less keyhole surgery that ensures complete excision and doesn’t require us to make a new opening in the skull,” he added.
Dr. Janakiraman, who was trained in the procedure by internationally renowned neurosurgeon Dr. Amin Kassam in the U.S. 10 years ago, has been doing the procedure for the past nine years in Tiruchi.
For the patient’s elder brother, Sardar Khan, the experience has been both exhausting yet exhilarating. A file clerk at the local health centre in Sibi, the Khan brothers had taken their father, who is paralysed, to a doctor in Quetta last year, when the physician there suggested that it was Mr. Bakhtiyar who needed medical attention urgently. “None of us knew that he was unwell,” recounted Mr. Sardar. “We were advised by neurosurgeon Dr. Asghar Khan to seek help in India immediately. I couldn’t believe that I, who had never left my village to see even Lahore or Karachi, had to go to India.”
In a process that took three to six months, Mr. Sardar convinced Mr. Bakhtiyar and his other siblings (they are eight brothers and two sisters) to get ready to meet Dr. Janakiraman, besides applying for passports and organising visas.
The brothers took the Samjhauta Express from Wagah to Delhi on January 31. The Tamil Nadu Sampark Kranti Express brought them to Tiruchi after a 46-hour journey. As a humanitarian gesture, the hospital has waived all fees (in the range of Rs. 1 to 3 lakhs), except the cost of medicines.
“I’m feeling much better now, and my eyesight has improved,” said Mr. Bakhtiyar Khan. After a few days of observation and a final MRI scan, he will be free to travel back home with his brother.
Said a gratified Mr. Sardar: “I haven’t seen much of India, or even of Tiruchi, but to me, Dr. Janakiraman and his team are India. I’d like to thank all my new friends in India for taking such good care of me and my brother.”
Filed under: pituitary, Treatments | Tagged: cavernous sinus cavity, Dr. Amin Kassam, endoscopic, pituitary surgery, pituitary tumor, surgeon | Leave a comment »
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