Finally, in desperation, I emailed NIH to see if I could take part in a Growth Hormone study. Of course, there's not one going on now, but I took a chance and emailed Dr. Nieman. She said " We'd be happy to re-evaluate you, including a check to see if you need GH. Can you send me any other issues so that I can plan a short admission?"
I spent yesterday trying to gather my "other issues" together. I was shocked to see how many there were that I had listed. And all the time I thought I was just fatigued.
I sent this back to her:
Dr. Nieman, I want to thank you so much for responding to my email. You've given me so much hope again, that maybe there is something that can be done, rather than this watch and see attitude, while I'm always feeling terrible.
You asked about my other issues. I'll mention them chronologically. I realize that many of these can be written off as just aging.
After my 1987 surgery, my facial hair never went away. I still shave daily. Of course, that doesn't help my feelings of feminity much.
Starting with my Cushing's, my libido disappeared, and that has not returned.
Until the last few years, I would take a nap some (not all) days of the week. I reported this to my outside endocrinologist at every visit, how tired I was, that I didn't feel that I was living a normal life. He duly wrote it in his notes and didn't do anything about it.
About 2 years ago, I started sleeping more and more. I find that my maximum awake time is 6 hours a day. I never feel fully awake, fully alive, though. I spend my 6 hours doing easy things like teaching piano or working on the computer. I never feel energetic enough to clean the house or do things with my friends.
When we recently went away for a 3 day weekend, it took the whole next week to recover. I would go to bed normally, get up at about 11 am, because I felt guilty, wander out to the living room to "watch some TV" and fall asleep, only to wake up when my husband came home from work, about 8-9 PM. We would have a dinner that was easy for me to cook, and back to bed.
I feel that I can no longer drive places that take more than 45 minutes to get to - my eyes start closing.
I continued going for my yearly endocrinologist checkups - UFC, bloodwork and he would send me home leaving me to deal with the facial hair, the fatigue, the depression.
About four years ago, he found my cholesterol to be high and started me on Lipitor. That lowered my cholesterol to his satisfaction and I continue to take that. I started going every 3 months to monitor the cholesterol.
In the fall of 1999, he told me that my pituitary gland was starting to shut down and that I would need Growth Hormone "someday" and gave me a prescription for Cortef to take for stress, since he didn't believe that my adrenal glands could handle any extra stress.
He ran the first of my Insulin Tolerance Tests. The Saturday and Sunday after my Friday test, I felt better than I had for 20 years. I a lot of energy and I was flying high. I did a lot of cleaning. I hoped that this was indicative that we now had some answers. Unfortunately, it did not.
I had two more ITTs. I do not know the results, only that I continue to sleep and sleep. Needless to say, this depresses me being so tired, not being able to do even simple things.
About 5 years ago, I lost 45 pounds with the help of Weight Watchers. I gained about 10 pounds of that back over the years. Last fall (2003), my doctor did an electrocardiogram (I think). When I went back to schedule my next Insulin Tolerance Test, he told me that I was setting myself up for a heart attack and that I wasn't worth treating unless I lost 10 pounds over November, December, January. He told me to come back only when I'd lost the 10 pounds.
I left his office in tears and didn't go back.
In the meantime, I see my regular Internist every 3 months to monitor my arthritis medications. About a year ago, he noted that my blood pressure was a little high, and it was every time that I went in. He himself had heart problems and quadruple bypass. He's still out on leave and his replacement checked my blood pressure and found it to be 179 / 105. She put me on a mild diuretic, HCTZ 12.5. Within 2 weeks the BP had gone down some, but not enough for her. She doubled the amount of the medication and I'll go in tomorrow to find out the effect of that.
A friend gave me a picture of my mother and myself that was taken in late September. I was very surprised to see how round, Cushingoid, my face looked, but I thought it was nothing (I did check for a hump, though!). Today, when talking to my mother, she said when SHE saw the picture she thought I looked like I had with Cushing's, too. Others say no, so it may have just been the angle.
Friends have said lately that I don't seem to be reacting normally to events. When there's something I should blow off, I take it to heart, as a fault of mine.
My mind seems more jumbled lately - I have trouble saying the words I intended, and I can't always remember what I want. Again, this could be aging - I'm 55 now. In addition to the depression, I go through periods of feeling worthless, like my life has been wasted.
In real fact, I have accomplished some things - I founded a website to support Cushing's patients, family and friends. The message boards have over eighteen hundred members now. I have always gone to visit members who are in NIH for testing or surgery. There's one member going to NIH on November 30th and I had to tell her I didn't think I could visit, because of my energy levels.
Through this website, a non-profit organization was formed to help educate and support. We have local and national meetings, and just had our first international conference. So, I don't know where the feelings of worthlessness are coming from.
I'm sorry that this is so long, but I wanted to share some of my issues with you.
Thank you again for giving me hope. It's a wonderful gift.