Cushing's Info

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.

Wendy