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friday

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Everything posted by friday

  1. Thank you! Compared to several years ago doing much better. Had a new dx that once treated helped a lot. Still about 30% of the old me but definitely better. How about you? Can I assume being gone means doing well?

    1. Sunflower

      Sunflower

      see....away again. Unfortunately being away means really feeling badly. I'm so weak I can barely stand and I just feel awful. But I have found an endo who says she thinks I may have cushings so at least someone finally isn't thinking I'm crazy. One doesn't put on 130 pounds for no reason. She's going to start some testing on me in January, basic things first like 24 hour urines. This stuff just gets worse as time goes on.

       

      So what was the new dx if you don't mind me asking?

  2. They are. They are looking for any and all offers for help so if you are willing and/or able let them know. I believe it's Barbara who is heading up the education and awareness area. PNA link to quoted content "WE NEED VOLUNTEERS! If you have an interest in volunteering as a speaker, trainer, Booking Agent, etc., please contact us, as we need your help! Contact barbara@pituitary.org today!"
  3. Mary, Has anyone explored following the podcasts on a Tivo? I am trying to figure out how to do that now but haven't quite gotten the hang of it yet. I can put in a custom URL I'm just not sure where to point yet! As always THANK YOU for such a great job. Renee
  4. Florinef the patented brand name drug has been discontinued completely as of June which was posted above. The only options now in the US are generic from either Global Pharma which is a part of Impax Labs. The other is Barr Pharmaceuticals. The Global tablets are whitish and round and Barr are oblong kind of egg shaped. The formula change occurred in the UK very recently and Australia earlier this year. Again I have NOTHING to say this is happening here in the US. I spoke to the my pharmacy who is a large national chain and so far they have not been notified of anything changing. I personally have Global generics for the fludro and have never had a problem. I have no idea what fludrocortisone IC is....wish I could help there.
  5. Hi all, on another list I'm on a note was posted about the generic form of Florinef called fludrocortisone acetate has changed formulas in the UK recently and Australia in the last year. I have found ZERO documentation that this has happened in the US. The new formulas now require refrigeration and cannot be left out for even an hour. It has to be transported cooled. If it is left out it shouldn't be taken. This is a new thing in the UK and some folks found the pharmacy not storing it correctly so please check this out over there!
  6. Melissa, what a GREAT find!! Thanks very much for sharing. I'll be downloading my copies too but it's comforting to know our wonderful host MaryO has them online too. Lesley I agree that is VERY disconcerting but some have had success after one surgery....I went about a year in remission....some remain....don't know. I went for the BLA because my body just couldn't take much more damage. As for using these docs....there is one listed with one of the articles that I had the absolute WORST experience with. Another patient (the late Kathryn McBride Miller) and I met and discussed our local endos and this horrible doctor topped both of our lists. I went to him AFTER pituitary surgery WITH pathology reports showing the ACTH issues (plus others) and he proceeded to YELL at me and tell me I never had Cushing's and had just had unnecessary brain surgery. I left there in tears. You can PM me if you're considered a doctor in this (OH) area and I'll share his name but for obvious reasons do not want to post it publicly. Renee
  7. Dr. F does not react negatively to mental disturbance symptoms or at least he did not with me. I sobbed and told him exactly how I felt and he wrote it down and kept listening. At the end he said "I'm 99% sure you have Cushing's but we need the labs to confirm and an MRI to find the cause." Later after the end of the sobbing visit I said something to the effect of "I'll understand if you say it's in my head like everyone else..." About a week later he said, "yes it is in your head, on the pituitary specifically...." He knows that cortisol screws you up psychologically and does not in any way make light of it or ignore it. R
  8. Hmmm, definitely a hard topic that sets you up for a knife in the belly but I'll share. Many of you know I was misdiagnosed bipolar long before I even knew of the hormone cortisol. In that time I was highly volatile and frankly didn't care if I woke up. I have in some periods had suicidal tendencies and sought help. Knowing the signs yourself is your first defense. I had about a half dozen ways to go and be neat about it...(not sure why that was so important) I hated my life, my body getting so fat (a phobia from childhood thanks to my mom) the inability to function or work. I have always been an overachiever and going from 100-0 in 2.2 seconds really did me in. Obviously I'm still here to tell the tale but that was because I had a good support system. I had to learn to trust someone not to blow me off and take my feelings seriously which is still very hard to do. On the positive side I was lucky and this experience strengthened my marriage. We did walk the path of me being a hypochondriac and "faker" and after a lot of counseling and forgiveness we're much stronger. R
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