I’ve been searching every possible alternative explanation. I really hoped I just had a Lipoma but GP was pretty confident no.
I’ve gained about 40lbs in the past year, I bruise easily and I have a Buffalo Hump. Cycle is regular, my mood is good, well ya know pandemic, home schooling, owning a business … Lol I don’t think I’m suffering any unusual stress or anxiety though. I am anxious over the time it’s taking to get any info.
I had blood drawn and an upcoming sono, date TBD, but don’t see my GP for 5 wks!
Can I get blood results over ph and skip right to Endocrinologist if Cortisol is high? Any input of speeding this along?
Can someone please help me? Over the past few years I have gained over 40 lbs, suffer from extreme fatigue, muscle cramps, headaches, just to name a few. I also have a hump between my shoulders. I have gone to see my primary care physician and asked about Cushing’s syndrome and she said that there’s just no way I could have this because it is so rare. I asked for a referral to see a endocrinologist and she finally agreed. After doing some research on this debilitating disease, I am convinced that I am it’s next victim. I am so scared. What can I expect from this endo appointment?
This question came up on the message boards today: Anyone ever used a Rife Machine on Cushings syndrome?
My response:
I don’t think so – this is the first I have heard of a Rife Machine so I looked it up and found this info:
Quote
American scientist Royal Raymond Rife invented the Rife machine. It produces an energy similar to radio waves.
Rife’s machine built on the work of Dr. Albert Abrams. Abrams believed every disease has its own electromagnetic frequency. He suggested doctors could kill diseased or cancerous cells by sending an electrical impulse identical to the cell’s unique electromagnetic frequency. This theory is sometimes called radionics.
Rife machines are Rife’s version of the machines used by Abrams. Some people claim they can help cure cancer and treat other conditions like Lyme disease and AIDS.
I remember someone on the House TV series trying a stunt like this on the episode titled Deception.
At a betting parlor where House happens to be, a woman collapses and House makes sure she gets to the hospital. He thinks she has Cushing’s syndrome while Cameron starts to think she has Münchausen syndrome, a syndrome at which the patient creates the symptoms of a disease, guaranteeing them attention and sympathy.
Rare Case of Woman Manipulating Saliva Tests to Support Cushing’s Diagnosis
Late-night measures of cortisol levels in saliva may not be all that helpful in diagnosing Cushing’s syndrome, a group of physicians discovered upon learning that a difficult to diagnose patient had manipulated the samples.
Although this behavior is extremely rare, the research team from the University of Calgary in Canada, argued that — when a diagnosis becomes difficult — it may be advisable to confirm suspicions using another and more reliable method that can distinguish natural from synthetic glucocorticoids.
The case report described a woman who was admitted to a specialist clinic after two endocrinologists had failed to diagnose what they suspected was cyclic Cushing’s syndrome.
The woman had complained of fatigue and weight gain over the past four years despite weight loss banding surgery, and declined taking steroid medications. The examination did not reveal particular Cushing’s symptoms.
Physicians started an investigation, including overnight dexamethasone suppression tests and late-night salivary cortisol tests, which indicate increased levels of cortisol likely caused by abnormal functioning of the ACTH hormone.
Imaging did not show any suspected lesions in the pituitary and adrenal gland, and all further examinations did not reveal any disease changes that might have contributed to the increased cortisol.
The woman was put on a dopamine agonist. This treatment triggered a loss of eight kilograms (almost 18 lbs) over six months, and the woman said she was satisfied with it. But two late-night cortisol measurement showed continuing high cortisol levels.
When the clinic started using a new type of analysis to measure cortisol, however, findings changed. The new test, which was more sensitive, indicated massively higher doses of cortisol in re-analyzed saliva samples compared to the older results.
The new test could detect synthetic glucosteroids, but could not indicate if synthetic steroids were responsible for the higher levels seen in the retest. So the team used a method called liquid chromatography-tandem mass spectrometry. This technique can identify specific molecules, and revealed that the women had manipulated the samples using prednisone.
The woman’s physician also paid a surprise visit to collect a new saliva sample, which turned out to have normal cortisol levels.
The woman neither denied or confirmed manipulating the samples. And the team was contacted two months later by her new physician, requesting confirmation of her Cushing’s syndrome and details on her case.
The researchers believed the woman most likely has what is known as Munchausen’s syndrome, a mental illness that leads patients to feign physical disease. A 1995 report by the National Institutes of Health showed that 0.7 percent of all people investigated for too high cortisol had this syndrome.
Despite the rarity of this case, the team argued that chemical analysis is a valuable tool for both determining sample manipulation in difficult Cushing’s syndrome cases, or a different potential problem.
They also cautioned against putting too much trust in very elevated late-night cortisol, particularly when the symptoms do not match the cortisol increase.
Diagnosed with a rare disease that only affects between two and ten people per million, Marie Conley used emails to communicate with family, friends, and co-workers to keep them apprised of the diagnosis and prognosis of Cushing’s disease and the many complications she experienced on this journey. Her ironic humor and raw, emotional approach helps bring hope to those touched by this rare and unrelenting disease.
In her mid-thirties, Conley, who strived to keep herself healthy while maintaining the delicate balance of raising a young child, keeping a home, and a demanding career, began to experience a variety of unexplained maladies inconsistent with her life style.Because of the elusive nature of Cushing’s disease, the treatment is a long and complicated process of trial and error.
At this time, there is no cure, largely due to the fact that Cushing’s disease is considered an “orphan disease.” As is her nature, she has decided to “adopt” this “orphan” and is doing everything she can to bring awareness to this disease.Conley’s tenacious spirit and determination would not allow this insidious disease to triumph over her life. Armed with her laptop as the only weapon available in the sterility of the recovery room, the author attacks the keyboard with a vengeance to let friends and family know that in this battle, there is no surrender.
I would love to take one of the surveys mentioned in this news article. My Cushing’s went into “remission” just over 31 years ago but I still feel the effects of having had it.
Pre-Cushing’s I had no problem working a full day, having a piano studio overflowing with students, going out at night, cleaning the house, being a normal mom.
I could do as I chose – if I wanted to go somewhere, or do something, I just did.
Now, I work part-time and my studio is much smaller. Everything I do is to accommodate my nap schedule. I have to plan everything carefully so I can take my meds on time and be ready to sleep.
Even going to regular doctors is harder, explaining why I take cortisone and growth hormone, why I can’t take whatever meds they want to prescribe.
Discussing with a sports medicine doctor why I should (or shouldn’t) have a cortisone shot in my knee. (I went for it September 12! Now I’ll have to explain to my endo.)
Unfortunately, I also haven’t lost all my Cushing’s weight (probably at least partly my own fault LOL) and I still have to shave my chin every day.
I honestly believed that my kidney cancer was due to my taking growth hormone, which I take because of my pituitary tumor. Now, since I’m back on it, I’m not entirely sure – but who knows what else might be growing? Or maybe the different brand is better for me. Who can say?
What about you? How has your life changed due to Cushing’s?
I’m wondering if anyone post surgery is dealing with PTSD, specifically feeling like you are re-experiencing Cushings when you are having anxiety. I’m almost 3 years post surgery and have regular panic attacks where I feel like I am re-living having the disease
Please either respond here or in the comments below.
Note that this particular Cushie Car is gone. The current car is still blue and has the same Cush1e tags. 🙂
Today, I’m thankful for my “Cushie Car”.
Since I started attending Cushing’s events, I’ve always tried to rent a PT Cruiser. There’s just been something about them that I liked.
A couple of years ago, after my son was out of school, I was getting tired of driving the Mom-Carpool-Van everywhere. I think my mom was getting tired of stepping up into it, too. She doesn’t drive anymore, so she relies on whatever vehicle I’m driving to get her to appointments. So, I was delighted when she offered to pay for part of it. She didn’t realize it was going to be bright blue, though. I think she was thinking of navy or something more dignified.
Anyway, I had the car picked out, and the exact color I wanted and set off to the car dealership with my specs. They told me that the Cruiser didn’t come in this shade of blue. I’m sure that they wanted to sell one of the colors they had on the lot.
I got back to them and told them that I found this car online and I could go get it myself. Suddenly the dealership was able to get it for me, too, so I won out. WooHoo.
I’m just loving this car. 🙂
From a Cushing’s get-together in Columbus, OH, 2007, the yellow version 🙂
