I’ve just been diagnosed with CS and am due for an op in a few weeks time. I’m looking for info on recovery.
May 30, 2016
May 26, 2016
Golden Oldies, Pituitary, Pituitary Surgery, Steroid-Induced, Thyroid, Treatments antidepressant, Bell's Palsy, cyclical, depression, Golden Oldie, panic attack, pituitary, Prednisone, steroids, thyroid, transsphenoidal, weight, Weight Watchers Leave a comment
From Monday, February 2, 2009
Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.
I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.
In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.
Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.
Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.
I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.
Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.
Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.
Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.
I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.
Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.
My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss
In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.
If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.
May 24, 2016
May 22, 2016
I’ve just been diagnosed with Madelung’s Disease.
I am a 52 year old female, who doesn’t drink alcohol. Not typical of this illness.
At first I was so relieved that I didn’t have some type of cancer that spread into my lymph nodes. I am still thankful this isn’t really life threatening.
I know it may be a difficult journey.
May 19, 2016
From Friday, March 6, 2009
About 2 and a half to 3 yrs ago, i was being treated for a condition called Reflex Sympathetic distrophy.
While they were treating me, they were injecting me with steriods. And from that symptoms started showing up that had nothing to do with my rsd condition like; the red moon face, the obesity, the irregular periods, and the striae marks.
Due to the VA ruining all the tests they did, about 6 months later i was rushed to the hospital near death, when the doctors at the hospital did the tests they discovered that i had cushing’s syndrome and that i was lucky to be alive.
I am now cured of cushing’s however i still the striae marks all over my body and am still somewhat fat. I am afraid i could get sick again and am very self concious about my body.
May 15, 2016
just found this sight looking for answers to a long list of problems and diagnosis.
I have battled years long of severe stress and well am trying to find out what happenned and how to get well again. I have menapausal estrogen issues not answered shoulder impingement problems and one dr suggested I had phase 3 exhaustion which led me to study on adrenials.
blood work has been done whichis showing elivated red blood cell counts my thyroid levels appear within the normal range but 30 yearrs ago i was treated for hyperthyroidism which even then i suspected was not the right gland. Im wondering if this elivated red blood count is yet another indicaation of this adrenial issue as dr after dr finds this that and the other and treats each as such.
im just learning about this condition an dwhere it appears i am fitting into it but what test will show if it is or isnt? its all very confusing.
i am 51 now and as i have said the last 5 years of my life have had supreme stress and conditions that have just led to exhaustion mental and memory failures pysical problems that obviously didnt happen overnight and now the red blood count in the picture……does that fit in here somewhere?