Cushing's Symptoms

[Guest Hollys]

After inexplicable weight gain (approx. 35 lbs. in two months) and a constellation of strange symptoms, I turned to the Internet to perhaps find some reasons for my condition. Let me give you some background information for a clearer understanding.

- Ten years ago, I was diagnosed with a genetic form of pancreatitis that my PCP and his cogent coined "Enzyme Negative Recurrent Acute Pancreatitis" associated with astronomical hyperlipidemia and hypertryglyceridemia. I was hospitalized on a liquid diet and horribly debilitating narcotic pain medications numerous times. My doctors were finally able to treat it with a combination of diabetes-focused medications (initially) and a life-long very restrictive diet.

- I am very careful about what I eat, complying with my prescribed diet of no/ extremely little sugar (including alcohol, carbohydrates, etc.).

- I exercise vigorously and regularly, often running 10 to 15 miles at least three times per week, plus daily yoga and moderate running on the treadmill.

- I have a very stressful work environment, one that has caused me serious anxiety attacks and depression.

- Since April 2012, I have experienced profound fatigue and weakness, the weight gain mentioned above, excruciating lower back pain and general malaise, mood swings/anxiety/irritability/deep depression, brain fog & poor memory, swelling in my legs and esp. calves, edema and abdominal bloating, a strange metallic taste that is ever-present, sleep disturbance, and erratic menstration - heavy periods about six months apart. I only list these symptoms because of their severe nature and the fact that they began mostly at the same time.

- My suspicions compelled me to do a little research, and each time I entered my symptoms, Cushing's was the inevitable answer.

 

Having dealt with the medical community's diagnostic myopia repeatedly, I deeply fear bringing my concerns to a doctor. I just know that my bloodwork has misled doctors in the past; when they see that my liver numbers seem "unremarkable" they rush to judgement, concluding I must be a hypochondriac, or faking. It's disheartening, and it makes me constantly question myself. It has cultivated in me a practice of ignoring my own body's messages. However, these most resent symptoms have impeded my ability to perform everyday tasks, my ability to work, my ability to take interest in things I used to enjoy, and my ability to maintain my exercise and sleep regimens.

 

I would appreciate hearing anyone's perspective on my condition. I understand that your opinions do not constitute diagnoses, but if I knew others had similar experiences, and perhaps sought and received treatment, that would give me confidence to pursue treatment myself.

 

I eagerly anticipate your responses, and I appreciate having this forum as a venue to share my observations and concerns!

[ttiffany20191]

Hi Holly! First of all I just wanted to welcome you to the boards. It sounds like your symptoms need to be looked into further. You know your body and if something doesn't feel right then you should listen to it. Maybe you could print off some material ( this site has a lot of great info) and bring up your symptoms. If you don't get anywhere with your pcp, I'd see if you can get into an Endocrinologist. The first steps would be a 24 hour urine. I hope it isn't Cushings but if it is you are in the right place. Feel free to ask questions. When I was first diagnosed I. Knew nothing about Cushings and I asked a lot of questions on the boards. A lot of dr's don't understand this disease so you have to educate your self. Again welcome and feel free to message me if you need someone to talk to. - Tiff

[EyeRishGrl]

Hi Hollys,

 

I had a sudden weight gain, an absent period, and a few other symptoms, which was initially mis-diagnosed as Polycystic Ovary Syndrome. Despite treatment, I continued to gain weight. A year or so later, my father saw a local news health segment which profiled a woman with a rare disease, Cushing's Syndrome. My father called me into the room and said, "I think this is what you have."

 

I went to a new doctor (a PCP), who, without ordering a single urine or blood test, told me that I didn't have Cushing's because "it was too rare." Even though his exam of me revealed very high blood pressure. He bullied me into joining a study on anxiety and depression and a urine test for the study revealed high cortisol levels and he STILL insisted I didn't have Cushing's. He instead referred me to a neurologist for early-onset Parkinson's. The neurologist told me that my PCP was an idiot, and told me to contact an endocrinologist.

 

I had to wait several long months for my endo appointment, and before I got through three of my twelve bullet-points (yes I had them typed out, along with a "before" photo of myself), he said he'd never seen a more textbook case of Cushing's.

 

So, that's my story. My advice to you is to seek out an endrocrinologist (if you're lucky enough to not need referrals for insurance). You might have it, you might not but first you need a doctor who is willing to even consider testing for it.