And It's About Time There Was Some Support For Cushing's!
Dec. 2005--I have had treatment for hypothyroidism since 1995. In the fall of 2004, I broke out in a rash on my arms and legs that traveled and settled on my neck. The rash would turn into acne that just would not go away.
From the fall to spring of 2005, I also gained 40 lbs in 5 months. My weight then settled and my primary care doctor put me on high blood pressure and high cholesterol meds. My periods had also become pretty nonexistent (I was NOT stressed out about that).
In June of 2005, I went to a dermatologist for the acne (and got meds). I went to the ob/gyn for the missing periods. He asked me why I had not come in sooner. Truth is, I wasn't missing them, and didn't want him to do anything to make me have them again. He prescribed bc pills and tested for PCOS (which I did not have).
It was also time for my yearly appt with my endo. When he asked how I had been, I told the truth!! I didn't do my whole "oh, I'm fine-yada, yada, yada" speech. I griped about the state of my health. This doctor usually gives me the diet and exercise speech, but I cut him off at the pass, and told him what I had been eating for the last few months. He asked me if I had been putting bacon bits, cheese and ranch on the salads. I told him "yes, but not 40 pounds worth!!!" I also told him about the stress fracture I had in my foot (I had not fallen, it just broke).
He took a long look at my face, and stated I was flushed. He felt my upper back (the hump), then said "Have you heard of Cushing's? Let me tell you what it is..." He then gave me a little brown jug and ordered a ufc and bone density.
The results came back high (244), so we did a dex test and a salivary, which indicated a pituitary source.
He dx'ed me in 30 days-I am one of the lucky ones. Then I found this site.
My MRI showed an 8mm cystic tumor on my pituitary, and I had it removed on Oct 31, 2005. The neuro said it was larger than he had expected, so he had to be more "aggressive" than he had planned.
I am currently recovering at home and should return to work Jan 2. I feel worse than I did before surgery. My tests show they "got it all", but I am making no cortisol on my own. Dr has tentatively dx'ed panhypopitutarism, and I wear a lovely silver medic alert bracelet. I am on 20mgs of hydro a day (10/10). My muscles are sore and my joints ache and are stiff. I am trudging on. I have not been incredibly nauseous for 2-3 days which is wonderful. My next endo appt is not until mid January, so I won't be cutting down on hydro until then.
I am a kindergarten teacher, and don't know how I will cope going back to work full time. Some days I think I could have gone to work and made it through. Other days, I think there's no way I can go back. I am looking into intermittent disability in order to deal with the effects of weaning down. Every cut in dosage does me in for a week.
I am glad I had the surgery when I did. I can't imagine what the recovery would be like if my health had been worse before they went in.
I hope my adrenals turn back on. I am really worried about that aspect. My acth is normal, but my adrenals just aren't listening.
