JenS
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What type of pituitary tumor did you have and was it ever treated (sad to ask that, but true - a lot of times they are ignored). Do you get copies of all your testing, MRIs and reports - and did you get pathology if you had surgery? Are you being followed by a pituitary center and a neuro-endo? Have you been tested at all for MEN? Multiple endocrine neoplasia? How is your ACTH? Lung tumors tend to throw off more ACTH if they are carcinoid and there are blood tests for carcinoid - have you had those tests. You have had the PET scan what about an octreotide? Why are you on pred? Is that your post-op replacement? Pred can have a lot of symptoms - how much are you taking?
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Jennifer, New Jersey Pituitary Surgery 2004 Bilateral Adrenalectomy 2006 Radiation in the future for highly elevated ACTH levels.
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I saw Dr Snyder today. He told me I never had Cushings ever and that my pathology was normal (he considers cortitroph hyperplasia even if it is ACTH secreting not to be a source of Cushing's) so in his mind, my BLA was medically unnecessary. That being said, I now only need to boost my cortisol up and I would feel better. This completely ignores my ACTH that has been rising anyway, and is a...
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Recently discovered that a relative thought to have died of thyroid cancer died of an adrenal tumor. Makes you think, huh?
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There is a whole thread on here about depo and Cushing's. I had my tumor show up beforehand, but it was only after the depo that my symptoms went, well, all to heck...and my weight went totally out of control. Of course, it was all my fault. My gyne told me I should take up tennis (true story). Old thread - http://cushings.invisionzone.com/index.php...hl=depo+provera
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Ain't she a pisser! I love 'em too!
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Would I be too much of a PITA to say... one with survivor, one without, and no years as that gets too complicated? Otherwise Amber is going to look funny wearing this - a year on the shirt, a year on her neck... it is going to cause accidents. Good thing she is in the business of helping them...
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I like the ribbon plain... but that is just me... I will get a few for gifts! Of course, large sizes... Wonder if my brother will wear one?
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Well, as much as I like the original... probably would be easier just to do a plain ribbon or without the word survivor - just Cushing's in the hump position and we would know where the inspiration came from. At least it may make people ask questions - both the hump and the position of the ribbon might make people think a bit... I hope. Might have to make the website a bit bigger - my prototype got too small.
