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About kvb927

  • Birthday 09/27/1979

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    Philadelphia, PA

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  1. Dr. F is the man! Thank you so much for pulling this together.
  2. Rene - I can hardly bear to think about Alex and all of the other kids dealing with this, so, in that way, it doesn't make me feel any better. But, I do need to hear that I shouldn't blame myself. It's more about - if I knew then what I know now - kind of thing. I don't have the full report yet, so I don't know about staining. But, yes, I was DXed with acromegaly and Cushing's. I am facing the reality that someday I may be without a pituitary and without adrenals. I am pretty sure Dr. F would be down for a full removal of the pit, but I really want better testing of my adrenals. Because, of course, what if the hyperplasia is being caused by cortisol from my adrenals. I will let you know when I have more info. I should get my path report in the mail tomorrow and I am set to talk to Dr. F tonight. I may just keep testing until I get to the point where the next step is in my hands. Hugs for you and Alex.
  3. I was just re-reading this, because Paula told me my path report came back noting hyperplasia (acini). How did I know? Ew - this sends shivers up my spine. I hate when my predictions or suspicions are right, but they almost always are! AAAAAH. Anyway, I don't have the whole report yet, so I don't know about staining or whatever. I just know there was hyperplasia. It seems to me there is no way to eliminate the stimulus if you don't know what it is. The whole estrogen thing makes sense for me, I guess, because I took OCs for a very long time, starting very young. At the same time, I took some psych meds for a while that may have affected my dopamine, so it seems I may have had a ACTH hyperplasia-inducing cocktail going on. Then, when I took progesterone last year, I went into my longest, highest cycle to date. So, there are definitely stimuli. BUT, how can I eliminate the stimuli. Apparently, now that my pit is dang-near shot, I HAVE to take estrogen and progesterone for a variety of reasons, both current and preventative, as well as thyroid hormone. Any thoughts? I'm stuck, right? Anyhow, my plan for now is to hang in there fir as long as possible without another surgery. I am not ready to start thinking about pit surgery #2 or BLA. But, I am sure my body will tell me when it needs it...
  4. http://www.sessions2view.com/endo_pituitar...=20090102023033 I found the presentation about medical treatment of Cushing's very helpful. Best always.
  5. Do your testing! And, that's an order!

    I am so glad I got to meet you in LA. And, I will always remember the "Christmas Song" playing in the convertible through Venice Beach!


  6. We totally have Cushing's!

  7. Philly in the house! I am so glad we made this connection. :)

  8. It was great talking with you! It was actually a good feeling to have an, "Oh my god, me too!" conversation with someone for once lol! Talk soon and take care!!!

  9. So, take 'em out, already!!!! Geez.... Thanks, Mary!
  10. Heather - you are such a sweetheart! I can't help myself from stalking!

  11. Just stopping by to let you know...I'm totally stalking you! XOXO TWH

  12. Thanks Mary. This kind of scares me, because I have seven growths on my thyroid (in addition to changing pit MRIs). None have been biopsied, which I think is very weird and disconcerting. Why does thyroid cancer "look" like - goiter? cysts? lesions?
  13. This is great. I can't wait to go see him!
  14. Hi Coleen, Thanks for sharing! Great interview - way to keep the word out there! Cheryl - that was not Dr. L. That guy is at UPenn.
  15. Hey Mar, I listened last night. Good interview! I am so glad to hear that new doctor is working with you. Regarding maternity leave - DOH! - nobody is ever on our time schedule with these things! Love, Katie
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