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Everything posted by fatnsassy

  1. What I found interesting is that most of them did not have super high midnight cortisol serums, yet none of them went below 1.1 at midnight. Several went way down there, but never below 1. Some of those same people, never even reached a 7.5 that is said to be diagnostic at midnight on the serums. Gracie
  2. Hey Karen! I'd love to listen, but I never do. It is a super busy time at my house, and then I forget about it later. I have weeks worth of these to catch up on. I'm sure you will be great on the podcast! Thanks for the times we have talked. I appreciate your help and support! Love ya! Gracie
  3. I'm glad that adult Growth Hormone deficiency is becoming more widely known, and recognized as something that needs treated. It still has a long way to go. When the pharmacy called me, where my Genotropin comes from, they said, "We have a prescription for your daughter, Gracie. I guess she is GH deficient." I started laughing and said, "I'm Gracie!" They acted a bit baffled and was quiet for a second and said, "Oh.... well.... we have orders for you then." I figured they would be more famililar with adult GH deficiency, since they are the ones dispensing the drug. Apparently, they are not. Gracie
  4. This very thing has me a bit worried. I have wondered how some ins. companies might interpret things. I'm currently testing for Cushing's, but if my husband gets another job, and we get different ins., is that ins. going to be able to say that Cushing's is a pre-existing condition? I mean, technically it is, but I haven't been able to prove for certain that I have it. Does the fact that I have already been testing for it, even without a formal diagnosis, make this a pre-existing condition in their eyes? I understand somewhat, what the ins. companies are saying, but they have to look at the bigger picture. If they are going to insure us, what is it to spend even $10,000 in testing if it is going to get us a cure, where if we don't get diagnosed, and we have, say a heart attack, and end up in ICU or have some other VERY expensive medically issue come up, what did it save them? They should be looking at it that this is basically preventive... testing for Cushing's and getting a dx before it does more damage to our bodies which is going to cost more money in the long run! Just my 2 cents worth. Gracie
  5. Jayne, Your display looked very appealing to the eyes! Great job! I just listened to the broadcast and it was a great show! You've been through a lot and sound like a real trouper! You have a great story worth getting out there! Kudos to you for all of your awareness efforts! Hugs! Gracie
  6. Uhh... yeah... I was thinking about that too. I have to isolate myself to hear on the phone good anyway. A good place for that is in MY bathroom! I might be broadcasting live to you all from the toilet! I promise not to flush though! I'll just sit there and be good. Now, if I can only remember to get on then! I signed up for the reminder, but the bad thing is, if I'm not on the computer, I forget that I even had the reminder. ~sigh~ I hope that growth hormone helps my brain start working again! I have a question. Does everyone else have a hard time hearing MaryO? If I turn up my speakers more, I can hear her better, but then Robin is too loud for me. Is this just my hearing? I know I have hearing problems and you won't hurt my feelings by saying so! I just wondered if it is just me, or if they need to adjust microphone volume... if possible. It was a great show by the way! Judy, call in first thing next time, so you can take up lots of time! LOL! You all were great! I loved hearing it! Hugs! Gracie
  7. Mary and Robin, I'm one who said I would help. I really wanted to listen and call in tonight. It got so crazy here today, I totally forget all about it until it was over. It is really a bad time of day/evening for me. Tonight I was dealing with getting my GH. It's coming on Saturday! Yay! I'd love to help out. I like to talk... imagine that. LOL! Hugs! Gracie
  8. I missed it live too. We had some drama going on around here. I just listened to it though and you two did great! I think this is just really cool! I love it! Gracie
  9. This is an interesting article. I know that Dr. A. was LeftieJan's Dr. She really liked him. I would say he is one of the Dr's. who gets it! Gracie
  10. Bumping this up so you can see it. I put things on at weird hours and they get lost in the shuffle. Gracie
  11. I was doing a search for cortisol resistance and found this site. Just with what I was looking for, it brought up everything with the word cortisol in it, and there are 500 + pages of articles. They are on different studies. There are ones about hypertension/diabetes/insulin resistance/chrons/growth hormone/cortisol resistance, so many things I can't even remember. I couldn't possibly put links directly to them all, but here is a link to the page, and you can type whatever you want to search at the top. I think many of you will find some very interesting articles in this, even if you don't have Cushing's. Gracie http://www.level1diet.com/research/q/cortisol%20resistance
  12. Thanks for sharing the info Melissa! I downloaded all of them too! Gracie
  13. I've debated whether or not to post on this. I never want to share this part of my feelings with anyone, for fear it will be taken to mean I am suicidal. I have days, I just want to die. But for me, it is not that I want to kill myself, I just wish I could die. I feel so bad physically, that I just don't want to deal with it. There is some kind of threshold we cross somewhere in there. When you are feeling good, or just ok, you don't want to die. Nobody really wants to die in normal circumstances. But, when you reach a certain point, you just don't care! Dying would be a welcomed relief, honestly. I have never wanted to hurt myself. And, I have never seriously considered killing myself, although I can say the thoughts have run through my mind of, "if I were to do it, how would I do it" type thing. I just know not to dwell on it. I put it out of my mind and move on. I fear even speaking those words out loud. One thing is that my mother had tried to commit suicide at least once that I know of. I believe she had Cushing's, for other reasons than this, but I think this was part of it. She was labeled. She was a crazy person. She was not mentally right. She had severe depression, she was manic, etc. Ever since I was a child, I have had a major fear of being labled as my mom was, and thrown into a catagory and forgotten. Chalk everything up to the fact she is mental! I finally told my NP one time that I was depressed, and she gave me medicine. I don't currently take any. If it was not for testing, I would probably ask for it again. When I have my normal times, I don't need any medicine at all. When I am going through this garbage, I feel like I need medicine, but the thing is, I have always felt that it is only a symptom, and I don't want to mask the real problem. If you say you are depressed, you run the risk of a Dr. thinking that is the cause of your problems, not a symptom that comes from the other physical problems going on! Religiously speaking, I do not believe suicide is right. Please don't think I am being judgemental. It is just the way I believe. So, I would not do this to myself. I would not put my family through more trauma and grief. However, I do understand that when a person gets to that place, it is not because they are being selfish and only thinking of themselves. I have heard this statement before from someone very close. Statements like that make you not open up to others! People on the outside, who do not have a chronic disease, do not understand at all! On this side of it, we understand perfectly! I have lots of friends and family, but this is the only place I have felt like I fit in. What I mean is, if I talk to family or friends and ask if they have had this symptom or that symptom, they say no. Ok, so that ends the conversation pretty quickly. They are probably thinking, "Ok, you are weird. I've never had that or heard of that before." It makes me clam up and feel isolated. I feel like even though I have been living in society, I am isolated in my own little world. That is, until I found this site. Once I talked to you guys, and realized that we connected with everything, I felt so normal and happy to find someone who understands, and that I can feel comfortable talking about what I am feeling. My faith in God keeps my going through the rough times. I know he helps me, or I wouldnt' be here. I believe in God and his promises to us. He said he would not give us more than we could handle, and I believe that. He did not say it would not be hard at times, but he will help us through it if we let him. I am so thankful for this site and all the help we are able to give each other. Talking to others when we are feeling low, and discouraged with testing or anything else, really helps to keep us going! Medicine is not bad, but sometimes, all it takes is someone to understand! Gracie
  14. Thanks Ami and Robin! I'm so glad you posted this. This really makes me feel good about the 3 weeks straight of testing with midnight serums. I had the peaks and troughs! I felt like just going here and there, it was not showing a very good picture for me. I'm so glad I decided to do it the way I did. Gracie
  15. Holly, you might need to have your esophagus stretched. That might stop the spasms. I wonder if you really had these problems all along, but the cortisol was masking the problem. Now that the excess cortisol is all gone, these things have reared their ugly heads? I would ask the Dr. if that is a possibility. I know when mine drops, I seem to have way more problems, physically, going on. My PCP thinks that when my cortisol is up/high, it is masking any pain I would be having from other problems. Just a thought. Gracie
  16. There is a person on the bios who had this. You can look at her bio and it explains it. Gracie
  17. Thanks for posting it. That was a great set of articles! Gracie
  18. Well, yeah, but I meant it didn't bring up the page he wanted us to see. Gracie
  19. There is ongoing research. I participated in some research for Dr. Z while I was out there in CA last week. The problem is, getting all of the Dr's. educated when there is new information out there. Let's compare it to something else. I see it like this. I am a barber and I could cut hair the same way for the rest of my life, or wrap perms the same way for the rest of my life, and think that this it is the best and only way to do it, and be so set in my ways that I would not try something new, even if it has been proven to be better. I could still be doing haircuts all by hand, no clippers involved. It would only be stupidity on my part, but it has been tried and proven, so why change, right? I can cut hair either way, but one way is so much faster and easier! I see Dr's like this! They have learned it one way in school, so when new things come along, why change your thinking on it? Why try something new? You think the old way is the best way, or at least good enough! It is a good thing for us that some Dr's. believe in trying new ways! Gracie
  20. They are yours and they have to give them to you, but they can charge you for copying all of them! I'd call them and tell them you have faxed two requests for your medical records so you were wondering if they had them ready for you to pick up yet. If they say no, then ask on which day they will have them ready. Don't ask them as if you are asking permission to get your records. They are yours to have! Have the mind set that you will get them, you just need to know which day is convenient to pick them up! They do need a little bit of time to copy them, especially if your file is very thick. Gracie
  21. Violet, I found an article online from the site: www.medicalnewstoday.com that is titled Two Seville Doctors Discover The Gene That Causes The Hereditary Cushing's Syndrome. It is dated June 13, 2006. It does not say that they are talking about MEN's. It says that according to the work by Dr's. of the University Hospital, the fault is in the gene of the Protein Kinase A of Chromosome 17. "The mutation increases the quantity of cortisol in the blood anomalously, which shows the first symptoms when boys and girls reach puberty." It then goes on to talk about families in France, USA, and Spain that have had the Cushing's syndrome with a specific genetic anomaly. I thought it was very interesting and it seems to contradict what most Dr's tell us! Gracie P.S. I printed off a copy to take with me when I see Dr. F next week!
  22. I thought this was interesting. The Endo dept. at Ohio State University is in the James Cancer center! It is a huge campus. It could have been anywhere. I have wondered why it is in that part. Maybe it is a coincidence, maybe not. Who knows. Gracie
  23. Lisa,

    You are my inspiration! You must never give up the fight! You are so strong and we are waiting to see a cure!


  24. Thanks for posting this article MaryO! It is helps to know this, if we ever face this decision down the road. Some days, you just doubt yourself so much and wonder if it would just be better to live with this than to have to live with the consequences of the surgeries. This report is very encouraging in my eyes! Thanks again, Gracie
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