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Showing content with the highest reputation on 08/22/2020 in all areas

  1. Kathy, I would put your story on face book and tell all your friends to pass it along to their friends, and their friends, etc. Be sure to mention Kaiser. I'm sure someone will pick up on your dilemma. I went through a similar battle getting my condition diagnosed. Thank God my Endocrinologist was one of the best and insisted on an IPSS test after my MRI was negative. This led to pituitary surgery by a Neurosurgeon from the Cleveland Clinic. Best in the nation and true lifesavers in my book. You cannot give up. You (or your son) must take control of his health and insist, insist, insist, on g
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  2. I have Kaiser in VA. After 2 high 24 hour cortisol tests, my endocrinologist referred me to NIH. I am not sure that Kaiser has the expertise in house to effectively diagnose and treat Cushings. That said, my Kaiser accupuncturist is the one who tested my DHEA, which was nonexistent and referred me to the endocrinologist. Maybe he could contact my endocrinologist at Kaiser and see what he says - Dr T Lee in Falls Church, VA. NIH treatment is free except for the transportation.
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  3. Hi Kathy- Salivary tests can be touchy. Did he take them at 11:00 pm? Did he follow the directions carefully? The reason why I'm asking is that my new endo had me do 3 salivary tests. Every one I had taken prior to that showed high cortisol. But for some reason, I really botched these. The first one I did right. The second one - I don't know what I was thinking - I brushed my teeth right before the test even though the directions said not to (I am very forgetful). The third test I opened the tube, and the cotton swab popped right out and went directly down the bathroom sink. So I did
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  4. Hi Kathy and welcome! You are in a good place for support, information and understanding. Please don't let your son stop looking for help just because his current doctors don't understand this disease. His feeling is right---cushing's kills. I've been on this board for 6 years now and have seen many wonderful people succomb to this disease, some because they didn't see the right doctors. There is a helpful doctors tab at the top of the page...maybe there is a good one on the island. Otherwise, we will be happy to suggest a doctor who understands cushings. His insurance may or may not
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  5. Hi Kathy, your son symptoms do sound like Cushing’s and with the three high 24-hour urines really point to the disease. From what I have read, there are people with Cushing’s that have never been able to get a positive high on a saliva test. Your son may be one of them. I am not sure how Kaiser Health care works. I would check into doing 4-6 midnight cortisol serums. http://jcem.endojournals.org/content/83/4/1163.long. He will have his blood drawn at the ER at the hospital. I was able to bypass the ER and the techs had me walk to there lab, so it was a painless process for me...others hav
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