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desertrose34
@desertrose34

Posts: 1
Joined: Dec 17, 2018

Cushing's Disease? Lots of problems, Many years now. Please help

Posted by @desertrose34, Dec 17, 2018

Hello Community,
I have just joined the discussions board. I have had health problems for 20 years now and really need help with my endocrine situation. Can I start at the beginning? 20 years ago I was extremely healthy, active, thin, energetic, was in the military, ran twice a day. Somehow it has all changed. I am a bloated shell of the woman I was back then. Completely different. I am having problems getting diagnoses and treatment.
1998 Sexual assault with strangulation. Some issues after this. My hair grew lank and fell out some within the next month. Anxiety/depression started. Dysphagia.
2000 I left the military. I had a very fast weight gain of about 25 or 30 lbs within 6 months due to stopping my running regimen. Still felt fairly good though. Just had a larger waistline. Labs show cholesterol very high though I eat moderately healthy.
2004 Had less energy, but health still fair to good. Did notice hormonal problems start. Was shocked to find long hairs growing where us girls shouldn't get hair like that
2006 Abdominal pain, more hormonal problems, heavy periods. Was in the ER, they did a transvaginal ultrasound, large cyst on ovary, was diagnosed PCOS. But no treatment, no followup. Had labs done, told them my hormones were not right. They tested estrogen and testosterone and those were completely normal. Was also in ER for dizziness.
2008 More changes. My weight had stayed at about 40 lbs over my healthy weight for years now. No amount of dieting or exercise could change my weight. My hair texture had slowly changed over the years. From sleek, smooth and straight blonde, to dry, thin, breakable, frizzy, whispy and darker. My skin changed, it was now very thin, dry and cracked. If I bump a doorway or anything, my hand or arms will bleed. The bottom of my feet have deep cracks that I cannot heal. My facial appearance changed. My chin was square, my face puffy, my eyelids droop, features are coarsened. I feel very worn out. I have problems getting out of bed or out of the chair. Exhaustion. Had a massive grand mal seizure, was in the hospital. No explanation for it. I begin to be extremely heat intolerant. If it is more than 90 degrees I am sick, sick, sick
2010 Many more health problems cropping up including worsened hormonal issues. My scalp is always heavy with wax, even if I wash my hair daily. Hair is sparse and looks fried out. Face is round. Body proportions are "off". I am very round in the middle and shoulders but thin in arms and legs. Begin to be sick when I try to eat. Fatigue. Dizziness. Trouble driving because I get very dizzy. Arthritis in hip from old injury
2011 I try to get care from different doctors. My hormonal complaints fall on dead ears. Abdominal pain. Very heavy periods to the point of getting iron deficient anemia. Trouble concentrating. Trouble sleeping. I crave salt in a bad way. When I fall asleep, I sleep walk to the kitchen and wake up eating salty chips or just out of the salt shaker. Aches and pains. Diagnosed fibromyalgia.
2014 There is a new weight loss clinic and I go with high hopes. I am 40 lbs overweight, all in the middle, like a 6 month pregnant body. I tell them my issues, they just keep telling me I need portion control. I tell them I eat way less than 1200 calories a day. I get nowhere at the weight loss clinic. More reproductive problems. Extreme fatigue. Am diagnosed "borderline" type 2 diabetes, and insulin resistance. I am put on metformin and my a1c drops
2016 It is summer and I feel extremely bad. I go to a walkin clinic with severe dizziness and am given motion sickness pills and kicked out. Then a few days later, my kidneys fail. I have to have emergency surgery and a stent put in. A few months later I have another seizure, and drop a tray of glasses, and am cut up. Still trying to work, but barely. Severe emotional issues. Severe exhaustion. I do fairly okay early in the morning, but by noon or a little later I am completely wiped out. I get weird problems… like muscle tics or mini-seizures, I lose sensation in my arms or legs, me legs give out, I fall now, I am clumsy. I break a toe, I break a finger during falls. Doctors try to medicate me, but strangely, I am very sensitive to meds now. If I get a flu shot, or an antibiotic, it doesnt matter, I cant tell what side effects I might have from a med. I get very sick from an antibiotic and back in ER
2017 I am in and out of the emergency room and urgent care clinics. in November, I begin getting terrible pain in my lower left abdomen. This pain goes on non-stop for months until in May of 2018 I finally have surgery and a large fibroid removed, the left ovary with the large cyst removed, and have an ablation done to stop the heavy bleeding. Sept 2017, chest pain, and left shoulder pain. Cardiology visits. Potassium is low. I stop working when palpitations, chest pain, and exhaustion become too much.
2018 After all these years of hormonal problems, I am finally tested for Cushings / cortisol. It is hard to get endocrine care in my small town. The Dr even recommends I go somewhere else. Cortisol tests at 80mcg/ 24 hr. Way more than the standard of 0-50mcg. The hospital is sick and tired of me going in there. They even make fun of me if I try to walk in the door. I look up Cushing's disease and have every symptom. I wonder why I was never tested or diagnosed before. The doctor does not know where the cortisol is originating from. Pituitary or adrenal. But even with my body ravaged by the high cortisol, I am not given any treatment, just 6 month followups. Nov 2018 I write to Mayo clinic in AZ and am told they are not taking people with my conditions who are on state insurance. So I am here now. Very sick. Jobless. Exhausted, dizzy, in pain. Does anyone else have Cushings? How did they diagnose where it was originating from? What was the treatment? Should I be on treatment now? I don't even recognize myself anymore 🙁

REPLY

I too was functional in what I wanted to do.I until I hit 65. I am now 75 and am recovering form Cushings and gradually restoring my muscles. At around 65 I was not able to do the activities as usual but just thought it was old age. In 1970 my pediatrician brother and I were together visiting my mother and after noticing my efforts to move and get off the sofa, he suggested I might have Cushings. My local doc said no, but in looking up symptoms on the internet we learned that unusually high cortisol was a symptom of Cushings and for a month we paid to have my blood cortisol measured. The local doc could not explain what was going on, and we asked to be referred to Mayo in Phoenix. The Mayo endocrinologist asked me to raise my arms and to stand up. I could do neither. His response was "We're going to put you in the hospital today and to remove your adrenal glands tomorrow to SAVE YOUR LIFE ". They did! I now take cortisol pills 3 times a day and have to anticipate other times when my body will be stressed – such as going to the dentist and monthly having an injection in my eye. My situation was caused by a benign pituitary tumor of which Mayo did a large biopsy. The pituitary kept sending signals to my adrenals – "Flight, Flight, Flight". My adrenals send messages to my muscles – "Go, Go,Go" and my muscles were worn out! Hence I had trouble moving! At 75 it is an effort to regain my muscles and strength as I have never been one to enjoy exercising. I lost inches in height as I lost the muscles between my vertebrae. My husband and I were very pleased with my experience at Mayo, Phoenix and with the TEAM of doctors that treated me, Every three years I have a MRI at the local hospital to check for any growth of the Pituitary.. There has been none.

Hi @desertrose34 and welcome to Connect! The journey you have taken sounds exhausted physically, mentally and emotionally, and it must be so frustrating waiting so long to get a diagnosis.

I want to thank @jodiforan for her response and I also wanted to introduce you to fellow Connect members @megmor and @menville and also a member who I hope will return in @jasonkwellls in hopes that they can answer your questions.

I also wanted to share this link on Cushing's Disease so you can have more information on the illness: https://www.mayoclinic.org/diseases-conditions/cushing-syndrome/symptoms-causes/syc-20351310

Back to you desertrose, what the explanation the doctor gave you when no treatment was provided? Were any eating or exercise guidance given?

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