Cushing's Info

My prior history to Cushing's disease was first that I had trouble getting pregnant. After taking clomed, I had twins in 1987.  I never started my period again which was nice for awhile. When I finally went to the doctor, he gave me medicne to try to get my body to start. It failed and then he ordered a catscan. This showed my pituitary tumor. I had lost weight after the birth of my children but then slowly started gaining weight. I just dismissed it that I was taking after my mother who is a little on the heavy side and my dad has a pot belly. I just assumed that age was catching up with me. No diet helped. I was very shocked to say the least when learning of my tumor.

I saw an endocronologist who did further testing and then in 1995, I had a transphenoidaladenomectomy. The doctor had told me that I would need to take a month off from work. I was completely shocked. It seems that we always hear of outpatient surgery and fast recovery times. It has hard to comprehend. The recovery was hard. I was so weak. My husband traveled at that time with his work so my mother moved in with me so that she could deal with my children and take them to school. I could not hardly get out of bed. The doctor had described it that my body would be going through a withdrawal; and it felt like it. One endocronologist I had seen before my surgery stated that he would not give my medicine after the surgery to wean me off slowly. He said that it would be fine without. I thank God that I chose a different endocronologist. I cannot remember what he gave me but it was a weaning process. My body was so weak and aching that I don't know how I could have come through it if I had done as the other doctor had stated.

So, in about 5 weeks, I returned to work. Medicines increased through all of this. Then, three years later, my tumor returned. My doctor had moved to Vanderbilt but I followed him there.

So I had a CPK, or computerized photon knife therapy, in 1999. This was not as hard of a radiation on my body but acted more slowly in killing the tumor. Over the next five years, my weight slowly came off. I teach school and have the photos from every year so it was easy to see my weight gain and weight loss. My doctor was writing a textbook with another doctor and used my photo board in it.

Over the years, I am now on every hormone replacement there is. I take a thyroid medication, a growth hormone which began two years after my CPK, and as of last year, I now take a steroid for secondary adrenal insufficiency. Over the past year, I have gained a little weight and have been very tired. I know my medications are off and I am not "in balance".

My endocronologist was and still is one of the leading Cushing's experts. He has moved across the country from me so I am now seeing a new doctor. He has increased both my steroid and growth hormone so time will tell if this helps.

I am very fortunate to live in this time period where we have the knowledge and doctors that can deal with Cushing's. God has seen me through a great deal and is with me every step of the way. Hopefully, the rest of my life will just be making sure that my medicines are of the correct amount for me to have energy and feel good.

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