My name is Wendy. I started having symptoms some of the Cushings symptoms back after my daughter was born in 1995. I had a horrible pregnancy with my first child where I gained over 65 lbs, was very sick and in bed the whole pregnancy. Almost lost my son.
About a year and a half later I had my daughter. Supprisingly I did not have any problems with this pregnancy. I had suffered several miscarriages before my son was born and a few after both my son and daughter were born.
I thought it was strange, I went from a size 3 to a size 14 in about 9 months. I was pretty active...couldnt figure it out. I started to see a doctor to find out what could be causing my symptoms and he told my I was diabetic. I tried taking all kinds of medications for that and I just seemed to put on more weight. Noone had any suggestions.
Soon I started to have hair growth and was put on aldactone with no results. Several doctors later I was told I have PCOS. I was ok with this diagnosis cuz it was a diagnosis and we were starting to do some treatment. I took metformin and got no results..the weight didnt go anywhere, the hair kept getting thicker on my face, my legs and so forth. So I thought I would try another doctor. I went to a local endocrinologist.
I was told that with the PCOS I was insulin resistant, but noone went any further to do any other tests. They kept checking my A1c (at a 9), my FSH and TSH which were normal. Time went on and I started taking Byetta to see if it would help with the insulin resistance and hopefully help me loose some weight. That didnt help either. I went to a dietitian, weight management, got a 2 year gym membership...still nothing. I was able to lower my A1c to a 5.6 and they were happy with that, I wasnt I still didnt have an answer. I started having increased anxiety, mood swings, muscle weakness in my legs, couldnt sleep, headaches all the time.
By this point I had a hysterectomy (partial). Still no answer. Still no tests to check anything out of the ordinary. I have been to three endocrinologist, several doctors and they all say I do not have the symptoms and this disease is so rare, there is no way I could have it, but noone willing to check anything.
I was at work one day with a horrible headache, working in a doctors office when the doctor I was working for came up to me and told me that I have an adrenal issue. Unfortunately since I worked for him I could not be treated by him. So I went in search of another doctor. Still nothing. Was told I dont look the part of a cushings patient. I have the truck obesity, the round face, the buffalo hump, the insulin resisitance, the insomnia, some stretch marks, the facial hair and the list goes on. Now what. Nothing.
So I decided to look at other options again. I went back to the gym, decided I was just heavy. Obesity does not fun in my family. So I decide to try different things: weight loss assistance pills, diet and exercise with a personal trainer, the most I lost was 12 lbs. So now I went from 140lbs to 209. Current weight about 199-206 on any given day.
More complications came in to play when I had to switch insurance companies. So I started all over again just this year. I am in the process of finally taking the dex/supresion test. Woo Hoo. I hope this will give me some answers. Unfortunately, the physician I saw today says this will tell me yes or no. If its a no then he said I am done with endocrinology. I asked him what would my options be then I would still like some answers. He said since I have heard that I dont have cushings so much in the past he doesnt feel that I am likely to have it now. He says my stretch marks are not dark enough, he says the hair growth is normal in alot of women even with 2 years of laser hair removal..he says I will have to continue this for the rest of my life. But he was willing to order the one test. So I am hoping this is my answer.
I am tired of waking with a headache everyday, tired of my muscles shaking in my legs to where I cant stand up at times( which the dr today said that since I could stand up from sitting in the chiar I didnt have muclse weakness). I am tired of the fat around my neck making me feel like I can not breath.
Thanks for the support and reading my story. I will post more when I get my results back.