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Everything posted by da89165

  1. That is truly tragic! It looks like there is much room for improvement with the training and some needed safety checks. If anyone here needs radiation I HIGHLY recommend that you research the Proton Beam radiation therapy. It has the least amount of extra tissue exposed to the radiation and is a great option for brain tumors. There are only 6-10 of these machines in the US, but the centers that have them are highly trained and get excellent results.
  2. This is great info! So glad the docs in the UK are looking at this kind of information because the docs in the US don't do the "day curve" test which I think is ashame. Although after reading how they did this I suppose I could talk to my doc about doing this as an outpatient in terms of going to the lab 3x's in one day while doing a 24hr UFC. I have played around with my dosing schedule several times and have found that 3 x's a day works best for me. Though I still seem to crash every day around the 5-7pm time frame. It's very hard if not impossible for me to stay awake during that time. I actually decided that today I would try and take 10mg in the am vs. 12.5mg which I had been doing to move my dose schedule from 12.5/5/5 to 10/7.5/5 to see if I feel a difference. I'm so greatful that the UK has such good info on Addison's!!
  3. For those of you who are applying for disability benefits, this article gives good data on the quality of life and % of disability for those with adrenal insufficiency. I realize this doesn't necessarily apply to everyone, but if you've had a BLA or have ACTH deficiency, this could be helpful to your case. The last page of this article gives the info I'm talking about. ** The numbers are references to the footnotes at the end of the article......sorry the formating is not so great. "Quality of life, disablility, and prognosis Prospective data10 indicate excess mortality in hypopituitarism, including secondary adrenal insufficiency, mainly due to vascular and respiratory disease. However, deficiencies of other hormonal axes could also contribute. Mortality in patients with primary adrenal insufficiency has not been studied. Nevertheless, life expectancy may be reduced as a consequence of unrecognised adrenal crisis, underlying illness?eg, adrenomyeloneuropathy?and other as yet unidentified causes.4 Despite adequate glucocorticoid and mineralocorticoid replacement, health-related quality of life is greatly impaired in patients with primary65 and secondary adrenal insufficiency.143 Predominant complaints are fatigue, lack of energy, depression, and anxiety.65,69,70 In addition, affected women frequently complain about impaired libido. In a survey of 91 individuals, 50% of patients with primary adrenal insufficiency considered themselves unfit to work and 30% needed household help.144 In another survey of 88 individuals the number of patients who received disablility pensions was two to three times higher than in the general population.65 The adverse effect of chronic adrenal insufficiency on health-related quality of life is comparable to that of congestive heart failure.65 However,fine-tuning of glucocorticoid replacement leaves only a narrow margin for improvement, and changes in timing or dose do not result in improved wellbeing.145,146 Dehydroepiandrosterone (DHEA) replacement in adrenal insufficiency can improve wellbeing, mood,69,70,133 and?in women?libido,69 and opens up the prospect of improving quality of life for patients with chronic adrenal insufficiency." AI Seminar published paper
  4. I was doing some research this afternoon and saw this article that I wanted to share with everyone. The abstract states that people with cushings who did not have a pit tumor show up on a 1.5 T MRI, should have an MRI on a 3T machine as it's likely to show a tumor. Basically the difference between these types of MRI machines is how "thin" the slices of the pictures are. Honestly I think the reason most reserach states that pit tumors only show up on MRI's like 40% of the time is because the original 1.5T machines were designed for "organs" not "glands". Might as well start out with a 3T MRI cause the price is the same. 3T MRI's for cushings patients
  5. Mandy, can you tell me more about the connection between tea being bad for hypopituitary patients?
  6. I found a toothpaste that I just love! And my dentist can't believe there's no plaque build-up when I go in for a cleaning. It's a homopathic product that I order from Amazon, but I'm sure you can find it other places. The brand is called, "Homofresh" and the best flavor is the Chlorophyll.......is a mild mint flavor. The first time I tried the toothpaste it was another flavor and I couldn't stand it, so I really recommend trying the Chlorophyll first since it's a mild flavor. P.S. I also recently read that floride in our water and toothpaste is something that gets "stuck" or built up in our muscles and can cause fibromyalgia. So that was another reason I changed toothpastes. It is more expensive....probably $6-8 a tube, but it only take a small amount and if really worth it. Though it makes me mad we have to pay more for "less" in our products.
  7. I think you need to stipulate that they name any discovery "Colby", vs. the docs last name!!!! I'm really glad someone is reseaching this and that Dr F has helped make the connection to your family. Thanks for sharing such exciting news, this is really great!!!!
  8. I also saw the Today Show interview. I was mad and heart-broken that multiple doctors had either been ignorant or not aggressive enough to stop the progression of this disease much, much sooner. Bob, the National Pit Association founder has also had agromegly. He already had 2-3 different kinds of doctors lined-up in NY to see her while she was in NY if she wanted. You could tell he was livid when he heard she'd been told there was nothing that could be done. Well, that is true if your doctor doesn't know anything else, but it doesn't mean SOMEBODY else can do something for you!!!! As bad as we have it with trying to get docs to take our physical changes seriously, I simply cannot imagine a doc not acknowledging her physical changes. It's just criminal that he health and life has no become so difficult because of this. I agree that she's very brave to share her story and to keep moving forward hoping to find some doc that can truly help her. With a tumor as big as hers, and with it not being able to be totally resected, I can't imagine why they wouldn't have nearly insisted that she have radiation to kill the residual tumor. My hats off to her and her family!!!
  9. Can you imagine what a boost this has been to her self-confidence?!?!?! I know it couldn't have been very easy for her to get her actual pathology slides so koodoos to her for every hurdle she crossed to get her diagnosis!!!
  10. I nearly lost my religion last week when I took my Mom to see a local endo. My Mom's labs showed she was at the very end of the range for TSH and FT4. To me that means possibly central hypothyroidism......at least something to check out. This end went on and on about how FT4 and FT3 lab tests where TOTALLY unreliable and unnecessary to order. AND that these labs didn't show my Mom was hypothyroid........I must have asked her 3 times and I know by the 2nd time I was sounding like I was talking to a child!!!!
  11. Thanks for posting about this Robin, I saw your post and caught it just in time. At the end of each segment when they ask the treating doc, "why did it take so long for a doctor to figure this out"..........they both literally said the same thing...."well, there were lots of non-specific symptoms that could have happened to anyone......blah! blah! blah!" A real, cover-your-fellow-docs-butts type response....boo!! I was infuriated when the doc said, "all you need to do is take these 2 little pills and you'll have your life back".......kill me now!!!!! I could have bonged those parents on the head in a big way!!!!
  12. That describes exactly how I felt. It got to the point where I couldn't wake up to go to work. I'm so thankful my boss and others around me realized it was a medical problem and that I was able to take a leave of absence vs. being fired!!!! I sure wish I had perked up as much as she did though. I'm still dragging on the energy.
  13. Thanks I always like knowing the "why" and this explains it perfectly!
  14. Now we just need to figure out how to lower that bugger of a hormone!!!
  15. I've been needing this answer for a long time. I'm taking 15 of those Iron Sorb capsules for over 6 months and still have my ferritin drop drastically. I guess now all we need to know is how we can raise or lower our hepcidin levels!!!! When somethings wrong and you can't figure it out.......there's usually a hormone to blame! Thanks ROBIN!!!
  16. This made me so mad, this local doc they interviewed is obviously clueless!!! I contacted the reported and asked if she'd help me get this baby to a doc that could help. There's a fabulous neuo-endo in Brazil that regularly takes a leadership role in Endo conferences and is on Dr F's recommended doc list. I'll let you know if I hear anything back.
  17. I just saw a video clip of this, this morning. My heart broke!!! The mother said he also has the bones of an 8 year old, but no one can tell her why? How is it WE can tell her why?!?!?! I'm sure the poor child has a pit tumor making too much growth hormone and probably ACTH!!!
  18. I read some research this week that stated they're finding people with Interstitial Cystitis (major bladder pain disease) have abnormally high levels of CRH. So maybe these inhibitors could help people suffering with IC as well?!?!
  19. Check out [url="http://www.sciencedaily.com/releases/2007/12/071204163237.htm"]this article (click here)[/url]. They now have a 9.4T. It's used for metabolic processes in the brain, but wouldn't we like to get a look at our tumors with that baby?! Since that baby is in Chicago, I bet they could scan us right here in our homes in Indy and Ohio?!?!?! Seriously though, I just have to believe that with imaging being able to identify more pituitary tumors, there has to be faster care for people.
  20. OSU has an 8T machine. They don't use it on people, yet. They plan to, but who knows what year that will be approved! They are awesome! Talk about crystal clear imaging! They must be able to see into the future with that thing!!!!
  21. Here's an interesting article about the 3 most missed diagnosised illness in women. The 1st is Heart disease, the 2nd is thyroid disease & 3rd is Fibromyalgia. Very interesting article. Link to full article below. ************************************************************ Thyroid disease is one of the most often undiagnosed and misdiagnosed diseases. According to the American Association of Clinical Endocrinologists, up to 27 million Americans may be affected by thyroid diseases. Of this number, more than 50% are undiagnosed. One research study reported that 3% of college-age women studied had a thyroid disorder. 3 most commonly misdiagnosed conditions in Women
  22. Thank you Mary!!!! This is something I'm keeping an eye on as a possibility for my Mom as well. -She's got 3 adrenal tumors which involve both glands....all are about 2x2 cm -Nodules on her thyroid -Out of control hypertension....200/100 for many days a few weeks ago till they added a 3rd hypertension med -Scored 254 with high end of scale 142 for plasma free metaephedrines (99% accurate for pheochromacytoma) -She's also got low parathyroid with conflicts with MENS, but maybe this GRA is a possibility.... ....sure wish we were getting paid for all this learning!!!!
  23. I read through the entire post and all the comments and NYT article.....what an amazing opportunity you seized Robin Girl!!! Whew Hew!!!!! I love it when the southern bell comes back with research articles and goes on ignorance and prejudice!!!!!
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