Hi! My name is Tiffiny. I am 34 years old. I was diagnosed with anxiety and depression back in May because of weird pains in my back and on the right front of my stomach. I thought something was wrong with my kidneys and sciatic nerve. I kept getting weird tingling in my legs and face. I was told it sounded like anxiety attacks, which I am sure they were. I am stressed all the time and I don’t know why. I am also very short tempered. I was prescribed meds but I didn’t think I was depressed or have anxiety, so I didn’t take them.
About a year ago I started having weird things going on with my tongue. Every time I would eat anything my tongue would burn and wouldn’t quit bothering me. I noticed that I had white, longer looking taste buds too. I thought it was something I was eating so I kept cutting out foods. Nothing was helping, is it anxiety, is it my imagination, what is wrong with me? I googled burning tongue and lots of things came up, geographic tongue, burning mouth syndrome, and thrush. I decided on August 17, 2014, to go have a doctor take a look at it. He diagnosed me with thrush. I was treated for two weeks. The meds seemed to help but the burning was still there. A month later, one of my kids had a doctor’s appointment. At that appointment, I asked the doctor then if he thought the thrush went away. He said “no it looks like you still had it.” I mentioned to him that I also have major peach fuzz on my face, lots of darker hair on my belly, and darker pigmented spots on my face. I thought I had too much testosterone. He thought my body was for sure out of whack because of the thrush and ordered a bunch of hormone tests. I came in the next day and had my labs done. This is when I found out I had high cortisol!! My results were 28.5 should be between (6.2-19.4). Okay, what the heck is cortisol?? He referred me to an endocrinologist to have it checked out.
The endocrinology appointment was scheduled for November 3, 2014, three months later, really! I put myself on the cancelation list and got in rather quickly, September 30. Thank goodness because I am a severe stress case! At the endocrinologist visit, the doctor walked in and said “wow, you are not what I was expecting.” He started talking about the symptoms of Cushing’s syndrome. I am 5’3, 110 pounds, an avid runner and I eat pretty well. I do have very thin arms with bulkier muscles. My veins do poke out on my lower arms and are very visible, very dry hands and red fingers. The red hands/fingers started about two or three years ago which I was told it was Reynold’s disease or some skin condition. The red hands bother me very much, they look very old for my age and it is embarrassing. The doctor then ordered me an ACTH test and two 24 hour urine tests because my blood cortisol results were very concerning to him. Both tests have confirmed Cushing’s. My ACTH levels indicated that it most likely is a pituitary tumor. I was ordered to have an MRI a week later and they found a 6.5mm to 7mm. tumor in my pituitary gland. At this point I was referred to a neurosurgeon.
I met with the neurosurgeon a week later. Their pituitary clinic happened to be the following Friday and they only do it once a month, which happened to be on Halloween. He ordered two more night time saliva tests, a week a part, and the results where two and three times past the limit. I am now scheduled for surgery on Dec. 9th and I am totally freaking out. I do notice weakness in my muscles and have an achy body sometimes. My hair on my head has been falling out a ton for many months. I thought it was from nursing and a bad hair coloring! I keep finding more symptoms I really didn’t notice. Face is getting rounder on one side, I am shaky, cold all the time and believe I am losing feeling in my fingers. It is very hard to distinguish between hot and cold, I have to use my arm. My memory is horrible! I do get acne under my chin and on the sides of my jaw. I get obsessive about everything! I am very antisocial, think everyone is judging me or looking at my face hair, hands, etc. I feel so bad for my girls and husband! My obsession with my tongue and peach fuzz has hopefully saved my life! Trying to be POSITIVE for the steps forward!!
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Dec 22, 2014 @ 14:54:49
My name is Mindy and I am 51, I was first suspected with Cushings Disease in May of 2014, after going through years of complaining to doctors and being dismissed, it wasn’t until I made an appt with a new Dr and discovered that my blood pressure was extremely high that someone finally suspected Cushings. It took months of testing to be conclusively diagnosed and to get the MRI that confirmed the diagnosis. I was a textbook case, with all of the symptoms and signs. I was fortunate to secure wonderful Neuro & ENT Surgeons and had my surgery on Aug 6th and am still experiencing the “Recovery” of this disease. Its a long road, I am told it will get better ( I only hope and pray) My heart goes out to you all.
Oct 28, 2015 @ 14:45:05
Hi Tiffiny. I live in Utah also, and though I have all the main symptoms of Cushing’s I cannot find a doctor who will even consider the possibility or look at all of my symptoms together. I did get one 24-hour urine test and a dexamethosone suppression test done and they both came back normal and very low, respectively. I need to find a doctor in Utah who knows something about Cushing’s and especially Cyclical Cushing’s. What is the name of the doctor who diagnosed you?