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betseebee

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Everything posted by betseebee

  1. betseebee

    Carpal Tunnel?

    I had to start on .2 every other day at first and then work up to .3--alternating between .2 and .3 every other day. I did that because I started getting carpal tunnel-type pains and tingly hands. If I were you I would stop the GH for two or three days and then resume, alternating between . 2 and .3 for a while (hopefully you can adjust the dose downward). I use that strategy whenever I am slated to increase the dose--always alternating-- I'll do two or three days on the same dose and then one day on the higher dose for a few weeks--then move to every other day for a few weeks, then finally doing the same dose every day. Getting the symptoms you describe was a sign for me to slow down and readjust.
  2. I wish there was a way for you to get advertising revenue. I come back here every once in a while--it's a comfort to know that it is here. You saved my life as well, Mary.
  3. Thanks for posting this. I'm curious to know, if you don't mind sharing, what you were eating that caused you to gain the weight and then what you eat on the low histamine diet. Does this diet help fibromyalgia symptoms at all, do you know? What histamine-related symptoms did you have? Thanks in advance for your reply.
  4. So 46 percent died within the first year after the BLA? That scares the daylights out of me. Aack. Chickening out.
  5. Hi, So sorry to hear you got the run-around, which so many of us can relate to. I am glad to hear they finally found your tumor though. There have been people on these boards with kidney cysts and Cushing's but it's been awhile and I don't remember who they are. I seem to remember that a Cushing's expert, Dr. Ludlam, who used to work in Seattle told patients that cysts anywhere in the body are common with Cushing's. For example, I have a pineal gland cyst and liver cysts. My liver cysts have shrunken though since my last CT scan--I am currently in remission from Cushing's so perhaps the high cortisol was indeed causing these cysts. Perhaps someone who knows more about kidney cysts will chime in here. Good luck with everything.
  6. O.k. well this question is a little past the deadline but I hear that not all patients can take Korlym. Which type of patient should not take it?
  7. If you think you might have Cushing's then it is important to rule it out. You need to do many urine tests for cortisol--if you can do four over a two-week period, along with four salivary cortisol tests that would be a good start. As a person who had Cushing's for many years before diagnosis I cannot stress enough how important it is to get an early diagnosis--the more weight you gain the harder it is to lose and the more damage is done to your muscles, bones, eyes, heart, etc. Even many endocrinologists have problems diagnosing Cushing's because they believe it is too rare and they are not up-to-date on the latest testing. Get copies of all your tests (it's your right) and keep pushing for more testing. Good luck and keep us posted.
  8. betseebee

    Confused

    Hi Kristina and welcome to the boards. It sounds like you have been through a lot and I hope your tests will give you the answers you need. Everybody is different of course but it seems as though younger people with Cushing's lose weight a lot more easily after successful tumor removal than anybody else. Being tired in the weeks after surgery is pretty typical as well but it can also take a while to be able to sleep through the night again. People with successful tumor removal don't seem to suffer from the kind of fatigue people with full-blown Cushing's experience. Many people need to keep an eye on their hormones after surgery and replace whichever ones might become deficient (including growth hormone). We will try to answer any other questions you might have. Good luck with everything and please keep us posted as to how things go.
  9. New: Elizabeth, California. Pituitary surgery #1, 2009. Pituitary surgery #2, 2010. In remission but constantly testing for a recurrence.
  10. I look forward to listening. It's late and I know this probably sounds stoo-peed but can you tell me what I will click on to hear your interview? Do I just click on "The Coffee Klatch" thing-y?
  11. I had SIADH + adrenal insufficiency after my second surgery. My E.R. blood work showed low sodium and low potassium. I wonder if the SIADH (syndrome of inappropriate anti-diuretic hormone) causes the potassium to be low instead of high in this situation.
  12. I'm so glad to see a survey like this. I had a lot of things to say in the "comments" section--the only thing was I forgot to mention how long it took me to get diagnosed.
  13. Jay Leno talked about this test in his monologue. He said something like, "You know how you tell if you're aging prematurely? Just look in the mirror."
  14. Interesting stuff. I had an alternative physician who wanted to treat me with a dopamine agonist a few years back. I didn't know I had Cushing's and he believed I had a problem with my hypothalamus and that I could be helped with a medication that I think was used for Parkinson's patients. I should have tried it.
  15. Very interesting Cyndie. I joined ancestry.com a few years ago, after being inspired by my in-laws detailed work on their family tree. They also trace their roots back to the Mayflower and a signer of the Declaration of Independence (last name Whipple). They are related to a mother and a daughter who were the last ones tried as witches in Salem, MA. The mother was executed but her daughter was not. My ancestors on my mother's side were cast out by Sir Francis Drake to the Caribbean Islands and in the 1700's some of them were sea captains who ran guns to the Americans fighting the Revolutionary War, for which they were punished. When I went to have my second pit. surgery with Dr. K. of San Francisco we stayed in a hotel in Fremont, CA. The exit right before our hotel's exit was called "Cushing's Parkway." I wonder if that was named after your relative?
  16. I missed the first 15 minutes--is there a way to listen to the re-broadcast today does anyone know?
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