Cushing's Info

Hi everyone! I am glad I found this site. I have been doing countless hours of research online about Cushing's. Some of the stories I have heard on this site sound all too firmilar in my journey so far. I am a 26 year old single mother. I have experienced symptoms such as faical hair and fatigue for about 6 years, but dr's told me I was fine and that it was because of my sleep patterns. Then about 4 years ago I devoloped what I now believe is a buffalo hump and also a double chin. I had always been very thin (about 105-110 lbs) and did not go up past 120, so I always thought this double chin was strange. Dr's told me the bump between my shoulder blades was from a car accident I had been in. I went through 2 rounds of physical therapy, but nothing changed. For years I ignored these things and just figured it was something I had to accept.

Then a few months ago the fatigue became much worse and after being hospitalized numerous times for extreme pelvic pain (dr's told me I had Pelvic Infalmmatory Disease and would not be able to have children) I decided to seek out medical help and get to the bottom of it! I saw a gyno and brought along a list of symptoms including, facial hair, increased body hair, increased thirst, mental confusion and memory problems, fatigue, weakness, pelvic and back pain and vision problems. She had my hormone levels tested, found that I had very high DHEA and testerone levels and diagnosed me with PCOS. When I asked her about the increased thirst (i feel soo thirtsty alost all the time and this does not change even if I drink a gallon of water) and the vision problems (which get worse at certain times of the day and seem to correlate with the blurred vision) she told me I was not diabetic and dissmissed the problems.

A few days later I returned to my primary care physician and asked for an ultrasound of my ovaries. I had had this done numerous times in the ER and the Dr's had never found any cysts. Just as I thought, my ovaries were fine. My doctor still never mentioned Cushing's. That weekend I started trying to figure out what could be wrong. I googled high DHEA and that's when I learned about Cushing's. I could not believe it! Many of the symptoms were so similar to PCOS, but the other things that OBGYN could not explain were on there too! The increased thirst, buffallo hump, moon face, slow healing wounds, cronic infections and easy bruising. Most of these things I just had thought were part of who I was. I was scared but relieved at the same time.

I went back to my primary Dr. again and told him my concerns and that I would like to be tested for Cushing's. He looked at me like I was a moron and told me that it was very rare, that I was not over weight and said he could not see a lump on my back. Luckily, he had a student Dr. working with him that day who was on my side. She asked him, "How can you not see the lump between her shoulder blades?" and had me stand up to give him a better look as she pointed it out. The student Dr. suggested we start the 24 hour urine test, even before they got my labs for the Gyno. A few days later, my tests came back normal and my Dr. said we had ruled out Cushing's. After e-mailing him several times, he has fially gotten me a referral to a specialist, but I could not get an appointment until the end of October. I am honestly not sure I can live like this until then! The fatigue has gotten so bad I can hardly do anything, and had to quit my job. The weakness is so bad at times, I could not even open the door to my dryer yesterday. I usally feel okay when I wake up around 8 am everyday, but things get worse as the day goes on. Usually by 4 pm I am crying in discomfort. Anyone else's symptoms get worse later in the day? I have read about people going years trying to get a diagnosis, and I am so scared that may happen to me. I am raising my son on my own, so I can not afford to live like this!

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