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Everything posted by Xuzuthor

  1. I totally agree. Not sure where smart fits in. And, cushiemom, it corrected itself right away in that person's case so it is likely not your cause. Nick
  2. I had gone to see Dr. Findling at one time. At the time, he did not really seem to believe strongly (if at all) of cyclical cushings. I had some elavated UFCs and salivaries, but since I then had some low ones, it was ruled out. He stated there was nothing else he could do. Now, perhaps with the knew knowledge the hospital has, Dr. Findling will have changed his mind. It has been a few years so he may have of course, but it is something to watch out for if going to see him. The researcher does intrigue me, enough that I may contact the hospital or visit to see what their views are. Anyway, if anyone finds anything out, please let us know. Nick
  3. Thanks, gracie, will give it a look when I've got the time. Always good to have more articles to look at (while feeling up to it)
  4. 10_23_07_DontDoIt.txt The article is about pituitary tumors even, not even Cushings. The symptoms may have been from non-functional (non-hormone creating) tumors in those cases. So, if just having a tumor in general increases your tendency, the risk from such a disease as Cushings would really increase it. But, we all know what Cushings does, and finding the increase tendency of having Cushings would not be surprising. But, we also don't know quite as many with Cushings who have gone through with this drastic decision for many reasons: 1) We all found this site so we all have a great support network. It is true that we don't have face to face (unless lucky enough to go to a Cushie meeting, I highly suggest it, plan your own if you can! Even meeting one person is wonderful). 2) This also implies we have an informational network. Some of us may or may not have Cushings, but we all have access to tons of medical inforamtion here. We don't feel helpless; we are empowered. 3) Many here (not all) have or have had insurance/money to help get treatment. I know this is a bold statement, but I will explain later. I am NOT saying we have it easy; this disease sucks away your finances as well as your life, trust me I understand. Of course, even with all the right pieces: support, information, and finances, we still have issues; we still get drepressed. It doesn't ensure we get diagnosed. So many of us have a hard time, and it's so hard. But, no think of this. You are one of those people who gained that weight; you trust your doctor with that old school loyalty - they know what's best. You had saved up money for a year or more to see him since you work full time, yet get paid a pitiful amount; you have no insurance; it's all out of pocket. No chance of ever finding online support - you've never had internet - not on your salary. The doctor tells you how all these things can be caused by your unhealthy eating habits, perhaps your mental instability as well. You of course trust him since he does know best. Life gets harder and worse, issues keep rising up, and it's all your fault. If only you'd excersize more, eat less, but even walking hurts. You are killing yourself, and don't want to go to the doctor for symptoms since the main cause is what you did - you haven't excersized and ate well. You live life day to day, one day at a time until either these symptoms cause an early departure or you succumb to you "mental instability" and hasten the process yourself. Living without insurance is VERY common in the US. Point #3 was not about all of us being rich or well off; it was that even though some of us are barely making it there are even more who aren't making it at all. Their only chance is that they never get ill. On my emotional days, it can even hurt to walk around (mall, downtown, etc) and see people who look a bit Cushie to me, but also look like they have quite a low income (not homeless just low income). People I know, acquaintences and such, may even make a comment on how obese or distastful they look while inside I am crying for them. No one knows how they feel. Perhaps that person is just overweight, but maybe she is Cushie; maybe her husband beats her and food is her only friend; maybe she has low thyroid; maybe she's given up on life and is coasting. Typically, I walk and shut it all out and only let people in partway. It would be too draining to feel that for everyone. Thus, I come off as more cold than warm. Wow, I got so sidetracked. The point was that I feel for all those people who slipped through the cracks, the people that doctors couldn't see due to finanace or wouldn't see due to misconceptions of obesity and blame. It's sad, regardless of whose fault it is. I don't care if it is their fault for being poor or having no insurance (taking a risk), no one should have to pay with their life. Anyway, as far as depression, some have read some of my posts on being hopeless so I've felt it too. And, I have cycles. When my mind is extremely hazy, I am unhappy I guess, but not able to concentrate enough to be depressed. To be depressed, you need to snowball your thinking, one thing leads to another leads to another, etc. I can't think of both things in full at once long enough to lead them on at my worst. Additionally, even thinking one is too much effort. There is a lot of energy spent on it, and I'm running on empty at those times. Thus, I am typically only depressed on lows I think. I believe the transition from high to low (or low to high) is when I get the most confusion. When I adjust, it gets a bit better, concentration-wise. I do think I'm entering my low....I had felt I was, but only was intermittently low, funny how I know it all, but didn't associate right now that I am too confused to be depressed. Perhaps I'm wrong and it's low to high; we'll see. I was fine at the beginning of this post, but now I'm so confused; getting that way so easily lately. But, even at my worst, I would never hurt my friends/family that way, but as others have said, at my worst times, I wouldn't mind if it ended (as long as it wasn't my fault - no guilt). Can't go too much into detail about my experience while lacking concentration - too hard to recall and feel and tell. Feeling for all that have to deal with this, Nick
  5. So, basically, at best, even after cure, Cushing's patients are 1.8 times more likely than the rest of the population (if they are indeed cured), else it is 4.4 times more likely than the rest of the population (if their disease persists). I believe that is what the mortaility ratio implies. It would be interesting to know what they considered in remission. For example, if upon death they got to make sure there was nothing left in the pituitary. It's always hard to know if someone is truly in remission so I'd like to know what they used to determine this.
  6. Oops, didn't mean to sign twice; hope that's ok.
  7. The following is a very exciting article located at http://media.pituitary.org/newsletter/dec2006/articles.htm which is PNA's website. Basically, it shows that all of these people had the same essential proteins missing. What I would be interested to see is something that would confirm that these essential proteins being missing caused the tumors rather than the tumors causing the proteins to be missing. I will see if I can do some research to see the specifics of this mechanism to confirm if that can happen. If it can't, this could definitely be a very exciting tool at diagnosing people, at or least showing who is at risk. It seems like it needs a lot more work before it can be used as a diagnostic tool, and it seems it only will show half of the people with such an issue. What I REALLY want to know, is how many are missing these proteins with no symptoms, no tumors, etc. Because, if very few are missing them without being Cushingoid, then it could be another piece of evidence to diagnose us. I need more evidence, myself, so I am very interested in anything I can get as far as clues. Granted, even if only Cushingoid people do have that happen, it would only help half of us (and it could even be smaller for us since we are that hard to diagnose group), but any new tests would be great. But, to be helpful, these essential proteins would have to exist in almost all who do not have Cushings. Such as, 10% of all people have tumors so that alone does not help us that much. Far too many with tumors are definitely not cushingoid, most are asymptomatic. I will tell you anything I find out; would love if anyone else heard anything as well. Researchers Make Progress Against Cushing?s Disease Recently the PNA received a very nice letter from a pituitary research team in Montreal. We pass it on here, as it explains the progress being made in the fight against Cushing?s, one of the most insidious forms of pituitary disease. Dear Mr. Knutzen, As a pituitary researcher, I have appreciated the great work you and the PNA do to bridge knowledge between patients and science / medicine. This kind of outreach must be very comforting for patients and I can assure you that it puts a very different light on the work we do in the lab to understand pituitary function and diseases. I have been active in the field for over 30 years since my PhD and my lab contributed by the discovery of Pitx1 (pituitary homeobox transcription factors) and of Tpit (pituitary Tbox factor) that accounts for 2/3rds of inherited congenital isolated ACTH deficiency (IAD). In fact, we predicted this condition, found the genetic cause and finally provided its first exhaustive clinical description last year. We published this week a paper that provides totally new insight into the mechanism of Cushing disease and that will hopefully lead to understand its origin and pathogenesis. The work should also help in designing novel therapeutic approaches based on the molecular targets that are disrupted in the tumor cells that cause Cushing disease. Here is a short text, which may be helpful in summarizing the discovery: MOLECULAR MECHANISM OF CUSHING DISEASE Cushing disease is caused by pituitary tumors that produce excessive amounts of the pituitary hormone ACTH, leading to excessive synthesis of glucocorticoids by the adrenal glands. Many symptoms of Cushing disease result from these high levels of glucocorticoids and they include fat accumulation, high blood pressure and predisposition to diabetes and osteoporosis. Normally when blood glucocorticoids are elevated, they exert a negative feedback effect on the production of pituitary ACTH, thus closing a regulatory loop that keeps both ACTH and glucocorticoid levels in balance. The hallmark of the pituitary corticotroph adenomas that cause Cushing disease is that these tumor cells are no longer sensitive to the feedback action of glucocorticoids. This hormone resistance is likely the first event in the formation of the pituitary tumors. A Montr?al research group led by Dr. Jacques Drouin and including collaborators in Canada, France, the Netherlands and United States, has just discovered essential components of the molecular mechanism for glucocorticoid feedback control of pituitary ACTH gene expression. Indeed, the Montr?al group discovered a large complex made of several proteins that are essential for negative feedback by glucocorticoids; this complex includes proteins that are known for their role in the control of gene expression and remodeling of chromosome (chromatin) structure. One of these essential proteins, BRG1, is also known to be a tumor suppressor. Consistent with the essential functions of these proteins in negative feedback by glucocorticoids, the researchers found that either of these proteins is no longer correctly expressed in about half of pituitary tumors from Cushing disease patients (both adult and pediatric) as well as from dogs with Cushing disease (for unknown reasons, this condition is more frequent in dogs than humans), thus providing a molecular explanation for the hormone resistance that characterizes theses tumors. This work brings the first molecular insight into the mechanisms of Cushing disease. Beyond explaining hormone resistance, it also identified genes that likely initiate the process of tumor formation. This novel insight will lead to the rational design of new therapeutic approaches for the more efficient management of patients with Cushing disease. This work is published in the 15 October issue of Genes and Development (Bilodeau et al, Genes Dev 2006, 20:2871-2886) and it was supported by grants from the National Cancer Institute of Canada and from the Canadian Institutes of Health Research. Please do not hesitate to contact me if you need some clarifications on the work that should be of primary interest to many PNA Newsletter subscribers. For the full text of the paper, please go to: http://www.genesdev.org/current.shtml#RESEARCH_PAPERS Sincerely, Jacques Drouin, FRSC Laboratoire de G?n?tique mol?culaire Glaxo Smith Kline Chair in Molecular Genetics Institut de recherches cliniques de Montr?al 110 Avenue des Pins ouest Montr?al, Qc Canada H2W 1R7 Tel.: 514-987-5680 FAX : 514-987-5575 email : jacques.drouin@ircm.qc.ca (I also apologize if anyone already posted it; ie MaryO in a news letter...I miss quite a few posts/journals these days)
  8. Oh well; we can't expect reporters to understand it all. It is just hard that things get so highly publicized and are written VERY quickly. My ex was a newspaper journalist, and it is amazing how quickly they write articles. Yes, it is incredibly important to get it right; they hate it too because they look incompetant, but it was an honest mistake that I am sure they will have no problems correcting as most people don't know all that much about the endocrine system and glands. Good catch though Mary. It is important to make sure that misinformation isn't spread without being corrected. The more informed society is, the more they will be able to be recognized faster. I agree though; it does sound like pheo.....so they got the right gland, just not the right location
  9. It sounds like a great idea to have that Mary...don't really have any suggestions as any would work great for me.
  10. Xuzuthor

    battle with depression

    Well, that's great at least. Hopefully it will start to help you out a bit soon as well. *hugs*
  11. Xuzuthor

    battle with depression

    How is the Effexor going, Lorrie?
  12. When I read it, I was thinking of vanilla wafer.....*pictures a pit tumor with whip cream*
  13. Even if we weren't able to set it up, we could all agree on a specific brand to buy from and color and go for it. There are many sites online that do custom jobs. Of course, if we could sell them ourselves, it would be awesome, but I'm just saying if it is too much trouble, there are other options. I just really like the idea. I currently don't wear any accessories of any type (besides my clothes ), but I'd love this.
  14. I agree. I likely don't have Cushings, but I'd love to have one just the same since now so many Cushie friends *hugs*
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