So, as promised, here's a snippet of what happened during my trip back to London. I had an appointment with my endo and I shared my concerns with her. She was very understanding and reassuring but suggested we conduct more tests in order to decide whether I could reduce my hydrocortisone replacement dose or not. For those of you who don't remember, hydrocortisone, is the medication I have been taking to replace the cortisol that my body is supposedly not producing as much of, now that I've had my surgery. The reason you take it is because if your body doesn't produce enough cortisol on its own it can be very serious, even deadly.
But if you recall from some of my previous posts, most of my Cushie friends have suggested that I shouldn't be on hydro for this long after surgery and that it might be one of the factors hindering my weight loss.
So anyway, back to the appointment...
The endo suggests several blood tests and tells me that depending on the results we can discuss changing my dosage. So after 2 days of waking up ridiculously early and fasting for the blood tests, I show up on day 3 to do a procedure which involves having blood drawn every 2hrs in order to observe changes. I have to admit, I was NOT looking forward to the procedure but what ensued wasn't particularly pleasant either.
The nurse comes in and tells me that he's received an email from my endo late last night and that she reviewed the results of my blood tests and lo and behold, my cortisol is high!!!
Unfortunately, for me this is pretty bad news as it could signal recurrence.... On the plus side, I don't have to do that hideous blood draining procedure.
The nurse goes on to tell me that the endo has therefore ordered me to complete 3 days of 24hr urine collection and finish it off with a dexamethasone suppression test. FUN TIMES!!!
At this point I'm trying to keep it together and not let my mind go to all these horrible places e.g. "your Cushing's in back!" but it's kinda hard to stay optimistic. So I focus on what the nurse is telling me and try not to get too crazy by reminding myself that cortisol levels fluctuate easily and that blood tests aren't conclusive.
It also helped that I asked the nurse what the exact result was and the number he gave me actually still falls into "normal" range. I guess my endo is concerned because she expected me to be on the low side but I'm convincing myself that this just means my pituitary is functioning normally now and that's good news.
Next episode: Urine collection or, the joys of being a Cushie.
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