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| Date | 2006-11-30 |
| Location |  |
| Message | Thanks for your comments Julie. Don't forget if you want a pen send me your address! (They are running out fast!) All the best, Andy  |
| Date | 2006-11-29 |
| Location |  |
| Message | Hi you mailed me your site details thanks very much. i have had a pit tumor (prolactinoma) for over 10 years although GPs thought it was just part of being a woman!! i have had my ups and downs and have had severe side effects from bromocriptine. Now taking cabergoline with much success. Have even got a 5 yr old son!! I have a fantastic endocrinologist who is happy to speak to me on the phone to answer any queries. My weight is slowly returning to normal levels and apart from tierdness manage to work full time and run a home/ have a dog and a pretty normal life. Anyone who is going through this talk to people i suffered for years without any help - have you tried the pituitary association they are very good!! Good luck to anyone with problems, it could be worse you will get there x x  866 |
| Date | 2006-11-27 |
| Location |  |
| Message | Andy, Great site. Thanks for sharing with the rest of us. I'm about 18 months post-op for my pit tumor removal and am trying to soak up as much info as I can about my hypopit condition. While I am generally feeling well, I still think I could feel better and the best advice seems to come from others, like you, who take the time to share their stories. Thanks again. |
| Date | 2006-11-16 |
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| Message | Thank you Andy for sharing your story. I have had this for only two years. still trying to cope. i consider myself very lucky to have this problem hit me in my 50s. i was able to have a family. even though my eye sight isn't great i can still see. another individual here same hospital same doctor is totally blind. my hardest part is finding those close to me able to understand what it is to go through the side effects of the meds as well as the effects of the pit tumor. thank you for thr invite to your web site. Mike |
| Date | 2006-11-16 |
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| Message | Thanks for letting me know about your website. I find it very helpful for those who are still searching for information on this illness. I must say it is also enlightening for me hear about those who are living a fairly normal life after such a life altering event. |
| Date | 2006-09-18 |
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| Message | Thanks for the update Shana...please let us know some more details on how you lost the 35 pounds - much appreciated! Al the best, Andy. |
| Date | 2006-09-12 |
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| Message | Andy, Been awhile...thankx to Barb for writing and reminding me ur still here! Thought I would send an update...DDAVP balanced, weight loss about 35 lbs, diabetes insipidus well controlled now with diet/DDAVP...there really is a good life after transphenoidal surgery! Please remind your fan club that 2nd opinions really can save lives! Have the greatest day ever! |
| Date | 2006-08-02 |
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| Message | I also had a pit tumor probably since childhood, but wasn't discovered til 1994. I had surgery to remove the tumor, but my pit gland and hypothalmus "died," forcing me onto meds for the rest of my life. I take the exact meds you do, but I take female hormone replacement. Have you had issues with severe weight gain? I will eternally look 9 months pregnant forever! I did not have the gigantism you had; in fact, I had NO symptoms until an annual physical revealed conflicting thyroid levels. An MRI revealed the tumor. The docs told me the tumor had to be removed or it would grow to invade my optic nerve, causing migraines. The growth hormone has been a life-saver in terms of social activity and just having a life! I also take DDAVP for diabetes insipidus. I can't tell you how happy I was when the formula was changed so that I didn't have the keep the little bottle refrigerated where ever I went, including the mall! I don’t drink coffee, so I don't know if it makes a difference. Someone I had chatted with a few years ago noticed that when she was ill, she needed less DDAVP, and I have noticed it also, have you? It is so wild to read other peoples' stories from around the world that are exactly like me! If you have any of those "giant pens," I would be honored to have one. My home address is: I will pay for postage if you wish. Karen Leonard 1336 Milton Way San Jose, CA 95125 Keep up the great website, |
| Date | 2006-07-24 |
| Location | |
| Message | Great website. I'm just recoevering from transphenoidal surgery to remove a pituitary adenoma and I wish I'd found your site sooner. You have lots of good info which is well presented. (You can read my mediocre blog on the whole episode at http://dalbitouk.spaces.msn.com/) |
| Date | 2006-05-20 |
| Location | |
| Message | Andy, It is great that you are so successful and have overcome so much inspite of having your pituitary removed. Your meds must really work well for you and you must manage them very well. You also have a terrific website to help many others. I read that in the UK DDAVP is given free to Diabetes Insipidus patients. This must be great and take the pressure off. Are your other meds free also? DDAVP doesn't work to well for me as Pitressin in oil did, which was painful to take and discontinued for a longtime. I take five bottles of DDAVP. I definitely need insurance as it would be $851 a month. I would be interested in hearing from any else who posts messages here and who lives in the USA. I look forward to hearing from you. Thanks for your time William |
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