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Kathryn G

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Everything posted by Kathryn G

  1. You are truly a Cushing! Wow! That is very neat that you have been able to trace back your roots and also find that you are related to the man who discovered this disease. Kate G
  2. I hear ya. I was the same, Jill. Would this happen to us in the States? Most likely not because we would have travelled to a specialist trained in Cushing's. I don't think it is our healthcare system though. I just think there are very few really good Cushing's doctors or pituitary centers. Some doctors claim to be a "cushing's specialist." It happens in the States too but people in the States have a choice ( if their coverage allows them). Hang in there, Jill. Something has to give soon. Kate G
  3. There are some real advantages to our healthcare in Canada. We don't pay a dime ( unless you have extended health via work) and everyone is entitled to medical. We don't have people being denied seeing a doctor, rich or poor. It isn't perfect though. We do have very long waits if your condition is not deemed an emergency. If you have a heart attack, stroke, cancer, ect. you will be seen right away. This lady, Shona Holmes, situation is slightly different than you would think. I have talked with her before. She did have high cortisol but it was coming from her adrenal glands from what I recall and she has had a BLA. I *think* more the problem isn't with the healthcare system, but very conservative doctors. In the States, you have a choice and you will still have the choice. In Canada, we are very limited and most endos seem very conservative. You have the same issues with some endos being very conservative in the States. We also go by old values often and that doesn't help. You won't have that issue. We are just slightly backwards and not up on the latest and greatest. We don't have mass. spec. urine tests. We didn't have saliva testing until very recently. I have a "yearly" MRI booked for July 2011. It will be two years between my MRIs for my yearly MRI. That is were I notice a huge backlog. Just waiting for a scan. I still do like our healthcare system but it isn't perfect. Kate
  4. I am not sure what you are leaming, Jessica. Are you meaning people in chat putting down other people? What is the chat box and how can people use it and abuse it? Kate G
  5. Judy, How exciting! I hope they get some answers and quickly. Keep us posted. Kate G
  6. Ami, Thanks for reminding us of these rules and thanks for reminding me. I can only think of two times since I have joined the boards that I have made a comment that I later regretted. I joined the boards three years ago, and for the most part, I have found lots of support and I hope I have offered support, too. The two times that I have opened my big trap, I later regretted it terribly. This just happened the other day and I am feeling so guilty about what I said. The person starting the thread meant well and I like her. I just was trying to point out that there could be a better way of saying what she was trying to say. I didn't mean to hurt her feelings at all but I should have said nothing in hindsight. I want to say how deeply sorry I am to this person. Thanks for this thread. It comes at a time when I personally needed to read theses rules again. Kate
  7. That is very interesting, Mary. Thanks for sharing with us. Kate G
  8. Great interview. I am planning on showing your interview to my whole family. It is very informative. Thanks for sharing! You look wonderful and did an amazing job. Kate G
  9. MaryO, Thanks for posting this. I know that from articles I have read that treating hyperplasia is much more difficult. Hopefully more knowledge is gained down the road and other people do not need to suffer. Kate G
  10. Thanks for sharing that article, Mary. Kate G
  11. I wanted to add something about this article. I was thinking and it might not work but they mentioned if you change something that triggers the hyperplasia it can die off. So, when people who are breast feeding, they might have hyperplasia cells to do with prolactin but when they stop breast feeding, those cells go back to the way they should have been. People who have thyroid stimulating hyperplasia and they add thyroid meds. that hyperplasia could die off. For ACTH they said that there is too much estrogen to begin with. Dopamine is lowered for some reason. They feel that the combination could trigger ACTH hyperplasia. So, what is you took some estrogen lowering drugs or natural products that lower estrogen ( like DMI). Plus someone takes a dopamine supplement or something that raises dopamine like St. Johns Wart. Could the two combinations kill off ACTH hyperplasia? It probably wouldn't work but what if they tried to cut off the chain of events that cause hyperplasia, could the tumor die off? I know that this is just speculation since they don't know exactly what causes hyperplasia but they do feel that certain triggers cause it and can possibly correct the problem. Mind you, at the end of the article it did mention that Cushing's hyperplasia is still harder to treat and remission isn't always possible after surgery. Kate G P.S. Cindy, those photos are from a doctor here in Canada. I have seen that same article she wrote. Her name is Dr. Asa. My pathology is being sent to her. She is a leading pathologist and happens to be married to Dr. Ezzat, an endo in Canada. Thanks for adding those photos!
  12. Sorry you are feeling so yucky, Robin. Hopefully you are able to get some well needed rest this weekend. I did read that some hyperplasia can be treated if the source is taken away. For instance, if someone is breast feeding, they might have more prolactin cells that are hyperplasia and once they stop feeding, the hyperplasia will cease. There seem to be some hyperplasia that can be treated once the source is removed. At the end of the article it did mention that some ACTH hyperplasia can not be treated. Someone mentioned Crooke's, that was mentioned in the artilce too. The pathologist in Canada that will be reviewing my pathology basis a fair amount on Crooke's. Dr. F. passed this along this info, that Dr. Asa does base a fair amount of Crooke's. Dr.F. feels that Crooke's does not happen with mild Cushing's, he believes it happens with advanced Cushing's. I was trying to find info on Crooke's and I found a little bit. I still don't totally understand what Crooke's is. This article mentioned Crooke's and someone who replied to this thread mentioned they had Crooke's. Kate G
  13. Robin, thanks again for looking for this article. I printed the whole article and read it a few times. I found it very informative ( as informative as it can be when they know so little about hyperplasia). There seems to be lots of speculation about hyperplasia since they don't know why this happens. I found it interesting when they said estogen was a trigger that might cause hyperplasia. Thanks. Kate G
  14. Thanks so much for finding this article, Robin. I read it over but I want to take my time and read it again later tonight. Thanks!!! Kate G
  15. That sounds very interesting, Gina. Good to know. Kate G
  16. I just heard Kevin in blog talk radio. He did a wonderful job with his interview. Thanks. Kate G PS I like what he mentioned about Canada. It is very true, many people with Cushing's would not be diagnosed here in Canada.
  17. Cindy, That is great news about the article. Way to go! You'll do great. Hoping you are feeling better soon and you can get the CSF leak under control. Kate G
  18. Endos need to walk the walk, not just talk the talk. Yes, this is huge and wonderful if endos are changing their thinking. I saw Ezzat in January and all he could say was I should have another CRH/DEX test. I have found out my CRH/DEX was not normal, as I was told originally by a different endo. He basis far too much on the CRH/DEX test, I think. If 20% of the population has some sort of problem with their pit. How many of these tests for Cushing's would fail the majority of the population? Kate G
  19. Thanks, Robin. I am printing a copy right now to read it. I appreciate what a big help you are to all of us on this board. We appreciate you and thanks for sharing. Kate G
  20. I figured it out! I just pressed on MaryO's live talk radio. Kate G
  21. Robin, I think that this is a very special project and thanks for your time in doing this. I am little confused though. How do people call in? I know that you taped MaryO's interview from last week. Is there a special number? I noticed you mentioned Itunes. I must have missed how to do this, I will read this thread again and see what I missed. I would have loved to listed to the people who you talked to this evening. Kate G
  22. Ellen,

    Thanks. I appreciate your help.

    Kate G

  23. Jeremie, I wanted to say a few things. How have you been feeling after surgery? Since you wonder about ectopic source, I was wondering if your symptoms have returned? I hope not. You mentioned the CRH/DEX test and people not responding with an ectopic source. My opinion is that this test isn't all that useful anyhow. Many people have been cured of pit. Cushing's but they did fail that test. They didn't have an ectopic source but they did fail the CRH/DEX test. I just think that test isn't all that helpful period. I do think it is interesting that people do not see a rise with ectopic source and that test. Maybe people should be having CT SCans to be certain before surgery. Phil, I hope you get some answers soon. I truly hope that you have a cure. I know that you have your doubts and I hope the doctors can figure this out soon for you. Kate G
  24. Katie, Kate, Kate, I'm ok. I am very happy to read about this new article about that test. I am not happy I failed that test since I am still in limbo and wouldn't be if I passed that test. This new article sounds promising, that maybe some endos will take notice. I fall into the 2/3 that fail the test and I am not sure if I will ever pass that test. I am excited to read this new article. Kate, it is nice to see you posting and I hope you are doing well. Kate G
  25. I have read both articles now and this recent article about cyclical Cushing's. I have one problem with that article. It mentions the CRH/DEX test distinguishing Cushing's from psuedo Cushing's. Both Dr.F. and Dr. L. mentioned that many people with Cushing's still fail that test ( not proving Cushing's). Many people on this board have had that test and failed it but they had proven Cushing's. In that article it even mentioned that the CRH/DEX test is becoming a good first screening tool for Cushing's. That is great if people pass the test, they can move forward and not need all the other testing. However, if you fail that test, it doesn't mean you don't have Cushing's. I don't like the fact that so much emphasis is put on one test. My two cents worth. Kate G
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