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Julie's Story

Hi, I am one of the many who suffered many years before anyone believe there was something abnormal with my health. I had even given up on it being more than over eating and being "lazy".

My first symptom was my milk didn't dry up afterI finished nursing my son. I went to doctor after doctor trying to find out why, one doctor from U of Mich, gave me med to make my prolactin go down but it only caused it to go higher, this was the only doctor to ever mention a pitutary tumor, he had a cat scan done and explained that even though it didn't show anything it could be just too small to detect, and that I should have the prolactin checked every 6 mo or so and that if the level changed up or down to get another cat scan.

This doctor moved and I was unable to locate him. I did continue as he said and the doctors basically humored me when I told them what he had said but they did the tests anyway, no one ever mentioned cortisol. So I kept getting worse and fatter. I at one point ended up addicted to diet pills trying to lose weight and then just using them to keep my eyes open so I could care for my young boys. This was about 1979ish, I stopped the pills when I became pregnet - I lost the baby shortly after at about 2 months along. The cycle kept going from doctor to doctor untill we moved to Tennessee in 1990. My Mom, sister in law and I all happened to read the same story in counter womans magazine and were half heartedly laughing about wouldn't it be great to finally have a cause for all the little (ha!!) ailments that were ruining my (and my familys)life. The weight, weakness, mood swings, blurring vision ect... had gotten so bad that it had cause serious damage to my family now as well as myself.

Now my Mom is a very well meaning but pushy type person and she kept pressing me to be tested for Cushings, so just to get her to back off I agreed to do so. The doctor of course said he didn't believe I needed to be checked for itand started to talk about the usual thyroid stuff, I finally asked him to humor me anyway because my mother would never let me alone about it untill I had it checked out. Well the first test was high so he had a 24 hour urine test done ,it came back so high he thought it had to be wrong and had me repeat the test, it came back higher, so next came the 4 day urine test it too was super high. My husband at this point suggested I showed the doctor my photo from after I had my babies ( I was a bikini perfect 130 pounds not even a strech mark) to compare to what I was then 275 pounds of blah, after all the tests it was the picture that convinced him that I had Cushings, hs said that proving it to the surgery department was the next challenge. Well an MRI AND one meeting with them and on a Thursday I was off to surgery the next Tuesday.

I must say that the surgery was a lot easier than I expected, I had a harder time with the MRI, but in all fairness going into it I knew that I would just get better from that point on, I didn't even concider the possible problems I just knew it would make me better, and anything was better than what I had been going through (I kept it simple and did not concider anything beyond that)

At first as I didn't retain any fluids and had to use a nose spraay for that, and had to supplement the cortisol to withdraw from the high levels my body had been used to, at first the doc. had me lower it too fast and I was so weak and dizzy I could hardly get up, the Cushings Hotlins I spoke to told me to go and take a larger dose and call the doc right away> He then told me to lower it a lot slower and then only as I became my body adjusted to the dose I was on. That was the only problem I had from the surgery. My body slowy got back to pretty much normal, I learned to welcome new areas that would start to itch and hurt because it seemed that that was areas that were coming back to life. It took a couple years and I only got down to 195 pounds. But I felt good and kept getting stronger. As late as last winter I could waitress a 10-11 hour shift and then go to the gym and work out for an hour on the tread mill. But I was still gaining my weight back.

Now I am being retested for cushings because my symptoms are returning. So here we go again Thyroid??? DIabeties??? ECT ECT...I even asked my doc to "humor me" with a cortisol test.

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