Jump to content

fatnsassy

Mega Poster!
  • Posts

    4,820
  • Joined

  • Last visited

  • Days Won

    2

Everything posted by fatnsassy

  1. I took one pill of Cymbalta for my Fibromyalgia and it threw me into an adrenal crisis. I had Cushing's, had pituitary surgery, then a bilateral adrenalectomy, leaving me with Addison's. I take hydrocortisone every day to stay alive. Most of the time I have no trouble, but that Cymbalta threw me for a loop. I had major bad diarrhea, nausea, dizziness, foggy brained, and I think I had a headache. I was a mess! As Melly said, you could be cyclical, and sometimes we go from one extreme to the other. It can be pretty brutal at times!
  2. Sorry I missed all of this. It was crazy here. We were sick all week, and had a funeral to go to on Cushing's awaremess day. I missed everything. You can add mine to the list though. Grace, Mt. Vernon, OH Pituitary surgery 8/2008 Bilateral Adrenalectomy 5/2009
  3. When I was first out of surgery, I did the 3 doses thing. I eventually went to 2 doses, because it didn't seem any different than 3, when I got low on my hydro. I'm only on 10 mg. total, with my BLA. I split it by 7.5 at 7AM and 2.5 at 2PM. If I went back to 3 doses, I'd do 5/2.5/2.5. I think it's easier for me to take 2 doses, and then I'm done with it. LOL!
  4. If it's a type 2 diabetes drug, what would it do to you if you don't have type 2 diabetes, or any type diabetes? Mess up your insulin and make you hypoglycemic?
  5. Ooo,ooo,ooooo! Please do see if you can find a paper on that! It would make total sense to me as to why my testing was the way it was. 1. My percent free cortisol was really low. Like 1.9% or something similar. I'd have to look. Everyone should have more than that free, het my cortisol binding globulin was not high. 2. My IPSS results were weird. I definitely had sky high ACTH on my IPSS. It was 2,000 something, but my cortisol only went up to 22!??! Weird! You'd think with ACTH in the 2,000 range, I'd have cortisol into the hundreds! I've always thought this was weird, but never had an answer for it! 3. I had a VERY hard time catching highs! Yet, I had MANY symptoms of Cushing's. I ultimately proved it, and I'm doing well in recovery. I'm only on 10 mg. of hydrocortisone with no adrenals, and at times feel that is too much. Yet, I don't feel I have rest tissue. Thanks so much for sharing this information with us, and I hope that doc can share an article about it! That would help SO MANY Cushing's patients. Many people have similar cases to mine, and this might be their issue as well! Hugs, Gracie
  6. Are there still magnets with the Cushing's ribbon? I've been meaning to buy one, but I always forget when I'm at the computer!
  7. I'm a fan of 3T's. I'm one who didn't show much of anything on a 1.5T, but my tumor was spotted on the 3T MRI! Glad the thinking might be changing along those lines. Thanks for sharing!
  8. I did a lot of research on toxins a few years ago. On a daily basis, we deal with over 150 chemicals that our grandparents were never exposed to. It's everywhere around us! Our homes are filled with chemicals! Carpet, vinyl flooring, and varnish on wood flooring or cabinets/furniture.... they all have and release chemicals. I decided which chemicals I thought I could reasonably try to eliminate from my every day use. The others, I just have to live with. I think the only way to get away from them is to live in a house with dirt floors or at least natural wood with no finish. All hand made, along with hand made clothes made with home spun cotton that's not dyed or chemically treated in any way. No fabric softener, only home made detergent (it still involves chemicals), no body wash or shampoo that smells good. We need to eat foods only grown in our gardens, and eat meat that we raise to make sure there are no steroids in it! That also means milking our own cows and having our own chickens. The list goes on and on. Our modern world that makes everything so nice for us is also poisoning us. I don't see where we have much choice in the matter. On some things, we do, but not everything is feasible for everyone. I agree, I think the chemicals have caused a lot of the disease and conditions we see today. Some of us are more sensitive to these chemicals than others.
  9. Sally, I'm not exactly sure what you want, but here's an article that has a section about adrenal pathology in Cushing's. Click here for the link. Hugs, Gracie
  10. Awww! Bless her heart! I wonder what surgeons she has been to. I hope they get it stopped for her soon.
  11. My only thought of the steroids mentioned was if by having the tumor hemorrhage, she would have dropped low, and went AI and needed steroid replacements to bring her back up. I don't know. But we all know you don't normally treat Cushing's with steroids. Not unless you drop too low. This serves as another reminder to those not cured yet, we need to get diagnosed as soon as we can. We must NEVER give up! I always felt like a ticking time bomb, waiting to go off. It was me against the disease. The race was on, and I won. It's too bad this poor lady didn't! It also proves we need better imaging available and better testing available to us! Her scan never picked up her tumor. If it had, they might have taken her more seriously in the first place and she might have been saved. Hugs, Gracie
  12. I replied too. We'll see if he deletes it. That' pretty shabby to delete posts from people who have actually gone through it. It tells me he doesn't want to learn any more than he THINKS he already knows. Another one bites the dust!
  13. It would help if they would give the name of the skin cream, so others would know if they have it in their cabinets or are currently using it. What good does it do them to report on it when they don't tell you what the name of it is? But... thank you for sharing this article with us. It just goes to show, we don't really know what all is in the products we use! SCARY! Hugs, Gracie
  14. Mary, That works fine for me at 8:30. Put me down for that date and time, and I'll be talking to you soon! Hugs, Gracie
  15. Mary, I can do another one, now that I'm post op. If you want me to, let me know a time. I'm open for anything at this point. Hugs, Gracie
  16. Thanks Mary and Robin! You guys are great as always. It was fun talking with you two! Hugs, Gracie
  17. Check out this article (click here). 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?! Oh, Robin, Shelley was asking where you've been hiding, since you have not been on the boards for a while. Hugs, Gracie
  18. You are right Shelley! I'm a big fan of those 3T's. There is not much chance of a 1.5T picking up a tumor that is less than 1mm, like mine! 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 have a 4T they use on animals, but won't use on humans, also. Right now, the 3T is our best friend! LOL! Gracie
  19. Mary, Sign me up for July 31st. Do you send out reminders for this, so we don't forget? I'll write it down, but I get so side tracked, a reminder would help. Hugs, Gracie
  20. Hi Connie! It was so nice to meet you in Indiana! Good luck on the rest of your journey! I'm glad you found u s!

    Hugs!

    Gracie

  21. This stuff makes me mad! It's one thing if you CAN do something different to change your health situation, but it's another when you can't control it, and they punish you for it. That is discrimination! We can't make Cushing's go away because we quit using some product, or start excercising more, or start eating something better! Along with that, we know, comes high cholesterol, high blood pressure, high glucose, etc. They look at those things individually, and think that lifestyle changes will make all the difference. In some cases, it does, but we all know that just because it looks cut and dried, it's not! They can be missing the bigger picture, which is so much more important. So what do they do? Punish us, the ones who are suffering, the ones who are paying the premiums for ins., instead of punishing the Dr's. who misdiagnose us! They keep shelling out money to them, because they decide they want to run this test, or that test, but they are irrelevant to our situation, yet our ins. company wants us to go to THEM because they are in network! If we choose to go out of network to someone who knows what they are doing, and gets to the bottom of it much faster, they refuse to pay for them at the higher coverage rate, just because they are out of network! Never mind that THEY are the ones who actually got you diagnosed and put an end to all of the maddness! It burns me up! Our insurance companies are idiots! I'm sorry, but my feeling is, if I am the one paying the premium every month, then I should be able to decide which Dr's. I want that money dispursed to! They shouldn't have control over who is covered for me, and who is not! Gracie
  22. Hey Chrisy! I've been missing you! I thought your computer must have died again! I don't know of any endos in NV. Hopefully someone else will. CA is not that far from NV. Just a thought. Just a hop, skip, and a jump over the mountain range. Maybe your hubby could "drop you off" there some day. LOL! Hugs, Gracie
  23. http://www.ncbi.nlm.nih.gov/pubmed/1765716...Pubmed_RVDocSum The immunohistochemical phenotyping revealed a higher percentage of immunopositive (secreting) microadenomas in the nonsuicidal group as compared to the suicidal group (80.0 vs. 59.38%) and a predominance of growth hormone-secreting microadenomas in both groups. However, these differences as well as differences in the hormonal profiles of microadenomas between the groups were not significant. CONCLUSIONS: These results suggest that pituitary adenomas belong to suicide risk factors. ? 2007 S. Karger AG, Basel. I wonder if this is because of people like us? If you have a tumor that is secreting all the time, it's easy to diagnose, and get it treated. Those of us who have it cyclical, it's on and off, and makes it harder to diagnose, therefore, they think it is not secreting, just because it wasn't at the time they tested. That = a very fed up, frustrated, depressed patient = higher suicide rate. My guess is the patients who get diagnosed quickly do not get depressed, or at least AS depressed, and don't have to deal with it as long. We get depressed because we know there is something wrong, and we have a hard time proving it. Dr's. think it is not a secreting tumor (it's not doing anything) and we have to keep testing, if we are lucky enough to have a Dr. who even believes us! Most of them just blow you of. That makes for more depression when you can't even get a Dr. to believe there is something wrong with you, when there clearly is! Gracie
×
×
  • Create New...