What a day.
I went to my 2 month check up on Monday. I had two doc appointments and a battery of blood tests. I got the results yesterday. Most of the results I was ready for. I am extremely low in all my hormones: Testosterone, prolactin, Growth Hormone. I was prepared for that. These things are fixable. Or at least I thought they were. What I was surprised at is my cortisol is still higher than it needs to be. They want to retest, but cant until I am completely weened off the steroids. That should happen within a few weeks. They warned me I was an oddball case. Im not worrying over the cortisol as much. Im worried about the other hormones right now. Without Testosterone, I dont have the energy or motivation I need, and the lack of it kills my bones. The GH will also make me feel better and help my mussels rebuild. I cant have the GH yet because my sugar was high the day of the test. I had been out of my meds for a few days and coupled with stress, didn't help my sugar. So they want proof it is ok. Plus, if I DO have a tumor still, or even just tumor cells, the GH will make them grow faster. I was going to get the Testosterone perception, but that might kill my chances to have children. The docs suggested I see a reproductive specialist to get other hormones that can boost my testosterone. The problem with this is that out of all the reproductive doctors I have talked to, most do not deal with men, and the rest just tell me to go back to my endo. I HATE doctors here! So Im stuck. I dont know what to do. I was hoping I would stain deficient because I could get meds that way, but I cant get any meds. I am beginning to think surgery was a bad idea. The Weary, Dejected, Zebra
4 comments:
Dr's are about the same pretty much anywhere. They're limited by the available research and unfortunately Cushings is still a relatively unknown illness. Even very reputable clinics only know so much. Sure, there are bad Drs but yours doesn't sound bad -- it sounds like they're working in the confines of what is known. Erring on the side of safety so as not to make things worse before they get better. It's rare to meet a Dr willing to go way out in left field and even rarer to meet a patient who will be willing to take on that many unknown risks. Yes, it's frustrating. Frustrating to be so sick and see no end in sight but... that doesn't mean your Dr is bad and that you should lump all Drs into a "hate" category. In fact, many patients should probably be a little kinder to their Drs. After all, they don't want you to stay sick. They just don't know how to make you better. Nobody does yet. I hope in time there will be a cure, or at least a better way to manage symptoms.
Doctors here don't want to see me better, they don't want to see me at all. That's why I had to go through 10 pcps to find one that would work with the docs in Seattle. And forget finding and endo here that wants a Cushing's patient to see. It's frustrating.
"Doctors here don't want to see me better"
BS. That statement presumes that they think badly of you and want to keep you sick. More likely they don't know how to treat you, don't know how to work within the structure you've set out (working with Drs elsewhere) or can't take on a patient with your insurance situation. I highly doubt they think "Boy, I really hope that guy stays sick." Trust me - if they think of you at all, it's probably something more like "I have no idea how to treat that person, I am not the right Dr for them."
You sound familer...
Anyway, what I ment by that is that these doctors don't want to see me better. They don't want to see me at all! When I call to see if they will take a Cushing's patient, the receptionist puts me on hold and when they come back it is a flat no. The doctors at UT Southwestern, when they find out I had surgery in Seattle, give me so much attitude it ticked both Mrs. Zebra and her father. That is what I have been dealing with for well over four months now. That's when I started looking for an endo here.
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