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About Katski

  • Birthday 09/13/1962

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  • Location
    Buffalo, NY
  • Interests
    Making jewelry, reading, cooking & spending time with my wonderful husband, 3 kids, 5 cats & chocolate lab.

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  1. Hi- I haven't been on this site in a while. I hope everyone is doing well. I wanted to post an article that my Endos wrote about me in 2014. To be honest, I knew they were writing the article, but forgot to look for it (haha Cushing's fried my brain). Anyway, i just discovered it a little while ago when I remembered and googled it. I'm not sure if this is interesting to anyone, but here it is: http://journals.aace.com/doi/pdf/10.4158/EP14345.CR
  2. Thank you so much for this site and all you do! :)Kathy
  3. Thanks for posting this. I have had a lot of questions regarding the outcome of A BLA. I'm waiting in the results of my last 3 salivaries, and I am pretty sure I know the outcome (rats). Is it me, or does it seem like there are alot of people having BLA's? Kathy
  4. Well, they don't necessarily spread. The tumors that cause Cushing's disease are generally very tiny. Microscopic, in fact. Sometimes people that have cyclical Cushing's have tumors that look like goopy blobs (for lack of a better description). My tumor was not visible even when my surgeon did my surgery. But my pathology report showed that I had a tumor. Or possibly a few. Sometimes there are several microscopic areas of disease on the gland. I hope that helped. :)Kathy
  5. Wow. This seems like a big step forward in finding an effective treatment. It would be so great if surgery wasn't necessary any more. Thanks for posting that Mary. It's very encouraging! :)Kathy
  6. 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 the test without the cotton swab anyway. Needless to say, the first test I was high. The second only slightly high and third I was not. I agree with Tally. I'd see if he can get some midnight serum tests done. Please tell your son not to give up. There are many of us here that have been to more than one Endo to get to the bottom of this. I traveled an hour to my new Endo and it was well worth it. She has experience dealing with Cushing's and was able to give me a diagnosis. Let us know how it turns out for him. Kathy
  7. JenS- I wondered the same thing. I guess it's the location of the contrast - the report said something about contrast being midline to the skull base - compatible with location of pituitary adenoma. Kok- According to my Dr. "right now we are chasing Cushing's down". I was told if I have Cushing's, he will move on to MEN testing. The Endo is waiting to see what my salivary and second 24 hr. urine is, and (if I fail those, too) a different test that that takes a few days and involves some kind of injection. So I guess time will tell. This is a very long process. And I'm not the most patient person....
  8. Hi- Thanks for your reply. I see at the bottom of your post that you had a parathyroid problem as well. I am having the same issue. In fact, that's how they found out about my cortisol levels. I had a sestamibi scan done in May that revealed a "probable pituitary adenoma". He sent me for an MRI and also did a bunch of hormone tests. The 24 hr. urine showed my cortisol to be high (150-is that considered high or not too bad?). However, the MRI did not show an adenoma or abnormality. My endo tells me that they are micro adenomas and sometimes you aren't able to see them on an MRI, but the sestamibi scan shows where the "bad cells" are. So he feels that there could be something in there, but it was missed on the MRI. I did read that Dr.'s are using sestamibi scans to look for micro adenomas of the pituitary so I guess it's possible. The parathyroid problem is strange. My 24 hr. urine calcium is very high. However, my parathyroid and calcium levels are going between the high end of normal and slightly elevated, and the sestamibi scan doesn't show any abnormalities, but I have a parathyroid gland that's down in my chest (?). However, I have osteoperosis and kidney stones, and so the endo sent me off to the surgeon. The surgeon is doing a 4-D scan on the 29th to see if I have an extra gland, or if there is something the other scan missed. Quite frankly, I'd like to find out the results of my Cushing's tests before I jump into parathyroid surgery since Cushing's could be contributing to the osteoperosis and some of the other symptoms. This is getting a little confusing....
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