Vanyel - The Mayo Clinic in Minneapolis has some of the top doctors in Endocrinology specifically Adrenal issues. I did a lot of research when I was gravely ill and we contemplated going there. That being said, I am beyond happy with my Endo here in South Dakota. He's located at the USD Medical Campus/Sanford Clinic in Sioux Falls. His name is Richard Barth. He is AMAZING! He listens to his patients, works with his patients, gives them the ability to take their health into their owns hands (within reason), has never been resistant to ANYTHING I bring up. I'm so very thankful I have found him. Awhile back I was going into crisis ALL the time and it turned out I was getting bad medication from my pharmacy. My doctor wrote me a script for predinisone so we could see if that was the case and all be damned I was immediately back to good. We switched from generic to name brand Cortef and I've been great ever since.

I can so relate to what Gash said, only I do not do well on prednisone so I take cortsol and florinef. Do you know that 80 percent of all our steroids are out sourced to China, and not inspected before we take them...Brand names offer more assurance of correct dosage, etc... The Mayo clinic is great. They will set you up with a doctor for every system, rule out, and rule in everything and set you on the right course. I am one of the few that has not adjusted well, so I have some good days' and some bad days. Addison's is hard, that is a fact, and it is rare, if you live rural like I do, it is so hard to find a good endo..My advice, go to Mayo, any of them, and get to the bottom of it, get on a regiment and stay on it. Addisons is rare so info is not easy to come by....hang in there, and take it day by day.....

My first endocrinologist Rose Christain is now at the Cleveland Clinic in Cleveland doing research on adrenal related diseases. She would be a great source to get information on excellent endocrinologist at least in the Cleveland.

I meant the Cleveland area.

Thanks everyone. I am looking at the Mayo Clinic in Rochester MN. I'm afraid I am flat out of hope that anyone can figure out what is going on of rme, but I'm also flat out of coping ability. So, something has to give. I don't know if this is the right thing to do - and I'm terrified that they will tell me its all in my head, or its depression, or some other stupid shit like they have done all my life. They will tell me I need to get off the steroids when I can't function without them. It all seems like a colossal waste of time. My doctor figured out I had no cortisol. He just can't get my body to settle down and behave itself. Sigh. I hate this......

Vanyel, I am so sorry for your continued health problems. It can all be so frustrating but there is an answer out there somewhere. In my job before I had to retire, one of the tests we did with people who had extremely low cortisol was a test for mold poisoning. Do you or have you lived in a place that has lots of molds. Interestingly the symptoms for this can be very similar to Addison's and many other auto-immune diseases. Also, mercury toxicity can be a similar problem.
I pray you find the answers you need!

Vanyel. I am really sorry you are having so many problems. I know how frustrating it can be. It has taken us a year, but yesterday at the Dr's we finally convinced him that Derek may have had a couple of mini strokes during his DIVC last year, and that there is more than just Adrenal Insufficiency going on.

He did try to say that perhaps some of Derek's problems were from PTSD from everything that happened last year. I couldn't believe it. Even with physical proof of what is happening, Dr's still wont believe you.
On the downside, the Dr tried getting Derek back to his Endo, and the Endo said "he is stable, his meds are workng, not my job any more". He is now going to see a General Medical Specialist, who is also a Rhumatologist.
I hope you get someone who can give you the answers you need.

I went to Mayo in Scottsdale several years ago before I was diagnosed. I was very sick and they never figured it out. Went to UCLA, they didn't figure it out. Finally 10 years later, second trip to UCLA, it was figured out. By that time I was so sick. I am currently treated by an endo at UCSF.

Hi Vanyel. I was diagnosed with A.D. by an emergency room doctor here in northern Illinois. Shortly after I returned home, I again started experiencing nausea on my prescribed dose and decided to make the trip to Mayo Clinic in Rochester to try to find some answers. I spent a week and a half there and had numerous testing done. Mayo is a major, profit motivated health facility which makes millions by the constant flow of sick people going in and out the door. I was not impressed and never got an answer as to why I was feeling awful. I'm not trying to talk you out of going because everyone's situation is different and you may benefit. But if you go, be prepared to do A LOT of waiting. I found the Endocrinologists here to be just as good. That being said, it is so difficult to find an Endocrinologist who LISTENS. My regular doctor beats them all at that. Good luck to you.

Kingherpt, you are the one who needs help; what a cruel, sick comment! Please find the group for emotional disorders and ask for help!

Nice one Webber! Please be sure to report the guy too so DS will deal with him appropraitely.

Good call, Gash; I sent a note to DS offices.

Paka,
Thank you for the feedback on Mayo in Rochester. That is where I was looking at going. Though I have no faith that these endocrinologists will even believe me, much less have enough interest to really delve into my problems for an answer. Frankly that is why I have not pursued any endocrinologists in this area either. They don't listen, they ignore you if you don't fit their text book definitions, and their treatment is atrocious. I know more about taking care of adrenal issues than they do. I hate the whole idea of going to see anyone else at this point. But at the same time, I can't go on the way I have been, the way I am. So, its getting to the point of pursuing further medical help, or pursuing disability. UGH. All can say is UGH

Vanyel - I'm seeing my endo on thursday. I'd be more than happy to ask him about the stuff you're going through and see how receptive he is. As I've said before I truly believe mine actually listens & isn't a textbook regurgitated. Sanford Medical is second to Mayo in the Midwest & that's where my doc is. Send me a pm so I can print it out.

Vanyel was asking for our experience with the Mayo Clinic and I gave my honest answer. This was MY experience there and like I said in my response everyone has a different situation. I am NOT trying to talk him out of going and he may well benefit with the doctors there. He was asking specifically about Endocrinologists not about every department and my visit was with that department ONLY. The man asked for an honest, truthful response.