And It's About Time There Was Some Support For Cushing's!
My story begins when I was about 30 years old when we moved into a house that had mold problems & also smoke from wood furnace. Developed exema, lung problems, and terrible headaches.
By the time I turned 40 my life started to fall apart. I had been an extremely motivated and hard worker and now had to push myself to make it thru the day. I became so weak, developed constant infections, especially sinus, my period quit, developed sleep apnea, memory problems and trouble concentrating, hypoglycemia, mouth sores, trouble sleeping, racing heart, high blood pressure, really bad bruising, facial hair, round red face, weight gain, muscle weakness, and joint pain. Saw doctor after doctor-ENT, cardiologist, rheumatologist, allergist, dermetologist,endocrinologists, internal medicicine specialists, chiropractors and naturalists.
Been on antidepressents several times because doctors thought I might be depressed. Nothing helped and neither did it help when doctors dismissed me -that nothing was wrong. They even wondered how my home life was. Then I really lost it. I knew they were trying to blame my husband. I could not have had a more loving & supporting husband although neither of us knew what was going on. I thought about 10 years ago that it might be cushing's but the endo ran 1 UFC and one afternoon cortisol test. At the same time I was having trouble with hypoglycemia and he wrote my primary dr that I was having panic attacks and should be put on medication.
About 2 years ago I knew I needed help or I might not be around much longer and also some of my children have similar problems. I knew I had to find answers for them. I saw a new young endo. She was just out of medical school. I admit she tried so hard but was completely stumped.
Next we drove for about 12 hrs to see a pituitary specialist. He was running late and kept looking at his watch. He didn't even want to see the pictures I brought. He told me I had syndrome X and ordered a couple more tests. He told me to go elsewhere because I didn't have Cushing's.
I needed to do whatever it took to get help so I traveled alone to LA and was diagnosed that night by my physical features, pictures and symptoms. Then to get some tests to prove it. Had high saliva and blood tests while in LA. Then needed to get a few more. Most of the UFC's were barely above normal or low.
Then 4 months of testing paid off. Surgery ordered but first MRI only showed tiny suspicios spots. So flew back to LA for another MRI and IPSS. MRI showed tumor so didn't do the IPSS. Had surgery before returning home. Still not well.
Growth Hormone testing showed I was GH deficient. Only stimulated to 2.4. At this point I still haven't gotten the growth hormone and the ins company is even refusing to cover the testing. I also wonder if I still don't have Cushing's. I've had it for over 20 years so its done a lot of damage. I have (besides 100 lbs weight gain) cardiomyopathy, hypothyroid, fatty liver, hypoglycemia, severe fatigue, and memory problems. I hope the growth hormone will help some. I am also to go for more testing for Cushing's.
I just want my life back.
Violet
