I had my followup appointment with my endocrinologist today. It went MUCH better than I was expecting. I thought I would go in, have her tell me to do more tests, and we'll wait to see what the tests show. Instead, I will be having consults with a radiation oncologist and an adrenal surgeon so I can weigh my options, I scheduled another MRI to check to see if we can see any more tumor, and I was prescribed a new medication that might help while we wait. The medication is usually used to treat prolactinomas, which are also pituitary tumors but instead of secreting ACTH like mine, they secrete prolactin, which causes irregular periods, infertility, and lactation. My doctor has had 2 patients with Cushing's on this medication and one saw great results from it. It has very few side effects and I only have to take it 3 times a week, but the one (pretty big) side effect I have to watch for is any change in my depression status.
One of my biggest struggles with Cushing's has been depression. It's a different kind of depression than most people I think, it's more of a mood instability than a depression. I just feel out of control of my emotions most of the time. For me, this means crying ALL THE TIME about things that don't necessarily deserve tears. I can't imagine how annoying that is for everyone around me.
If this medication works well for me and helps with a lot of my Cushing's symptoms, then I would feel more comfortable with radiation as a long term option because I could continue taking it while we wait 2-3 years for the radiation to work. We'll see how the next couple months go. I go back in July, hopefully to make some more long term solution decisions. I'm still not too thrilled about either option...hopefully this medication will help me make up my mind one way or the other!
As far as the petechiae - she called her husband who is a hematologist that does research with platelets and he asked her to order a few more blood tests to see if we can find out what's causing it.
One of my biggest struggles with Cushing's has been depression. It's a different kind of depression than most people I think, it's more of a mood instability than a depression. I just feel out of control of my emotions most of the time. For me, this means crying ALL THE TIME about things that don't necessarily deserve tears. I can't imagine how annoying that is for everyone around me.
If this medication works well for me and helps with a lot of my Cushing's symptoms, then I would feel more comfortable with radiation as a long term option because I could continue taking it while we wait 2-3 years for the radiation to work. We'll see how the next couple months go. I go back in July, hopefully to make some more long term solution decisions. I'm still not too thrilled about either option...hopefully this medication will help me make up my mind one way or the other!
As far as the petechiae - she called her husband who is a hematologist that does research with platelets and he asked her to order a few more blood tests to see if we can find out what's causing it.
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