And It's About Time There Was Some Support For Cushing's!
My name is Donna, the mother of a beautiful 21 year old daughter who recently developed a multitude of symptoms. She is a junior attending college and has excelled at her studies until of late. She was always an honor student, played many sports such as track and field, field hockey, cross country track and just physically active all the time in addition to working part time and just hanging with her friends. She was well-round and happy-go-lucky. Things have recently gone crazy -- June 2007 she wore a size 2 or 4 depending. By Sept. 07 she couldn't even get her arms into her size 2 suit jacket she had gained that much weight that fast. She started classes Sept. 07 and immediately started complaining about extreme fatigue so much so that she could hardly pulled herself from sleep and get to class. She is experiencing daily headaches, extreme fatigue, rapid weight gain (yes her face and neck are heavy -- losing definition), growing facial hair and hair on other parts of her body including the top of her feet (fortunately she has blonde hair), irritiability, a deeped voice, lower back pain and believes her vision has changed since her last eye exam Nov. 07. All of these symptoms seemed to come on after she had an abortion. I am not sure if this could possibly trigger these symptoms or if it could cause a hormonal inbalance in my daughter. My daughter has never had irregular periods/cycles.
I put all her symptoms in google and cushings was the first thing that came up. When I started to research I realized that my sister in her late twenties was diagnosed with a pituitary tumor; however she never had anything done with it. Throughout the years she took on the the appearance and symptoms indicative of cushings. Now she has numerous health issues and is progessively getting worse. When I look at my daughter I am beginning to see all the similarities of my sister. I immediately took her to our GP and asked to have her tested for Cushings. Of course he said he didn't believe that was what she had and did a little blood work and sent her to an endo. The one thing that stood out on the lab results was her DHEAS levels were 639 (45-320mcg/dL is normal range) well exceeding and almost doubling the high end of normal. DHEAS is made in the adrenal glands. Her testosterone levels were 76 (20-76ng/dL is normal range) so she is at the high end of normal but still within normal range. Testosterone is made in the ovaries. I also found out that DHEAS is a precursor to testosterone and that being said wouldn't her high-end testosterone level be caused by her extremely elevated DHEAS. Additionally, her FSH was 1.4 and fell into the Low out of Range while her LF was .09 and in normal range. Pretty much all the other lab work was normal.
Took her to the Endo who ran more blood work, gave a semi-physical and declared her as pcos with insulin resistance. Second appointment with same Doc to get results of blood work were pretty much the same as the first blood work with a slight increase in her elevated DHEAS level. My daughter was then given a prescriptions for Metformin. I asked how long she would have to take this prescription and was told "for life." She said my daughter was insulin resistant however she never did any blood to establish that fact. She told us that she has seen alot of eating disorders (my daughter doesn't have an eating disorder -- yes she is not happy with the recent rapid weight gain -- but eating disorder -- NO!!), she also told my daughter to eat whatever she wants, to stop exercising, to use breathing exercises, to stand in front of a mirror and using her name and say "I love (her name goes here)" 20 times every day and OH YES, and take Metformin for the rest of your life. THIS DOCTOR IS CRAZY!!
She had a cat-scan of the ovaries and the adrenals, apparently they came up clean since no one said anything about any cysts. (So where is this diagnosis of PCOS coming from? -- It doesn't make sense since she doesn't have irregular periods, no ovary cysts, no high testosterone and I don't believe she is insulin resistant either as there has not been any fasting glucose test done. Her BP: 92/62 and Pulse: 76 bpm all very good for her age, not abnormal. Her weight has reached an incredible 157lbs and she is 5'5" so its not like she is obese, she is at the low end of overweight according to the bmi charts and this weight has not been long standing to cause insulin resistance and PCOS. This weight was extreme within approximately 3-4 months.
Took her to have a vision field exam and will be having an MRI to check for pituitary tumor. I am currently looking for a new Endo who is receptive to cushings and adrenal disorders such as tumors or even nonclassical adrenal hyperplasia which can cause cushing symptoms. I am saddened for my daughter as she has always been happy and outgoing, energetic and loving. She is now overwhelmed with fatigue, pain, related stress to to feeling so bad, worried about course work, her vision, her weight and where all this is taking her. She's scared and quite moody.
We are located in Philadelphia, Pennsylvania and it there is anyone out there who knows of a good endo that is open and receptive to cushings and adrenal disorders please feel free to contact me at droch2003@netscape.net.
As a final note to everyone out there, please be your own advocate, take your health into your own hands and do your own research because I find that many doctors just want to give the quick diagnosis and throw prescriptions at you. Had I not done research, found this website and had not gone with my daughter to the endo perhaps my daughter would have just accepted her diagnosis of PCOS and insulin resistance, filled the prescription for Metformin and years down the road after more and more symptoms and irreversible conditions presented she would have lived a miserable life. To keep this from happening, I am trying to get an early diagnosis for what i believe she really has and that is either pituitary or adrenal tumor/disorder that is causing her DHEAS levels to be elevated and cushing syndrome to present. Again, be pro-active in your own health issues and God Bless you all!
