I would have to say that I probably agree that many people with Addisons are on supraphysiological doses of steroids and maybe even many have cushing like symptoms...but, there is one thing that those statements are not taking into consideration.

I do not care what any endocrinologist says, they do not understand the adrenal gland or this disease. I can go along for months taking the same very small dose of steroid daily and do great. Then, something happens with my body and it acts as if it has NO cortisol...even though I am taking the same amount and nothing crisis-like is happening to me. Even if I double or triple the steroid, I still feel horrible. This will go on for several weeks. You better believe I have to "over medicate" because if I don't, I will be in a full blown crisis and I'll be in the hospital or a coma. I can not explain why at certain times I do great & at other times I do not. It just is not as simple as adding another dose of steroid when we have a crisis. Something else is going on and it is much more complicated. & if we don't overmedicate, as they call it...we will be in a world of hurt!

I agree lacie. Dosing is definately a delicate balacing act to choose the lesser of evils. Either feel exhausted and unable to function or tak more and suffer the potential numerous side effects later. There is a member of NADF who is 74 and has been living with the disease for 30 years, so I like to believe there is hope for a good long life living with this disease.

Wow, that is great to hear...I don't know about you guys; but, I plan on living into my 90's atleast and bugging the hell out of my lovely children! I haven't decided if I want to live past 90...I am sure that I will want to when the time arrives. We'll see. :)

lacy,
I agree there is a lot more to it than the simple picture they paint for us. The entire chain of metabolism of cortisol is very complex. My doctor showed me a schematic of what they do know about it, and he says they don't know everything about all these hormones and how they function. I guess they are doing the best they can with what they do know, but they take it as gospel and it isn't. There can be problems anywhere along the chain of events that produces cortisol, or any of the ultimately complex chains of reactions that cortisol either starts or participates in in our bodies and who the heck knows just where each of us has that break that results on this disease. And I agree that we really have no choice but to overmedicate as undermedicating leaves us empty husks at best. There is just no way to mimic the natural production of cortisol from moment to moment like a healthy adrenal gland does. As for prognosis and longevity - the literature all says that people with AD can live a normal lifespan and have a 'normal' life with treatment so that should not be too much of an issue. It is the quality of that life that is more of an issue.

Anyway, I rant. Too tired, as usual

Vanyel

You all have very valid and interesting information to share. Thank you. One thing we have to remember is that our steroids are replacement, however, a person with normal functioning adrenal glands have storage capacity in their glands and they use cortisol as needed. We do not have the storage capacity. Dosing once, twice, or multiple times a day just cannot mimic a functioning adrenal gland that produces when a person is physically or emotionally stressed.

I, too, have the crash and burn. Some days I cannot lift my arm and am in bed all day. Maybe next day better. Just cannot predict how I am going to be and that makes it impossible to commit to social events or things that I need to commit to. I have also had to cancel doctor appointments because I've been too sick to drive myself to doctor. Bet the scheduler thinks that is a hokie excuse . . . but it is the truth ("too sick to come in to see the doctor"). Vitamin D supplements have not given me any extra umph like claimed by manufacturer. Fish oils, omega stuff -- nada, nothing. Rest is about all that can help me and it is just not predictable. Wish we had more research but because our conditions are rare and no one famous has "come out" yet, we don't have a spokesperson to advocate for us. Guess we will have to help each other by exchanging information. It sure helps me (hope it does you guys) to know that I'm not alone. Knowing that you guys also have these issues help me know that I'm not going crazy. What I am feeling is true and the validation means a lot. Keep on looking for solutions!

NIH is conducting a couple of studies on Addisons. I just participated in one. Maybe something you want to consider participating in....make things better for future AD patients.

How do you sign up to participate in a study?

Hi long time since was here last. There were and still are many times over the years I've cancelled a Dr apt. If they don't understand why when you try to explain it, to bad. I'm waiting right now on a call from the PA that diagnosed my AD. I was explaining to the nurse abt needing a med adjustment. I told her I could call Hershey the Med Center where I saw an Endo and his resident in sept/ oct. That was an appt from hell. I left with my head spinning. Called the next day, the resident said she wanted my Hydrcort. to be dropped from 60 to 30. I was so sick, throwing up, sweating,vomiting, drentched,dizzy. many things. They returned my call a week later. Were more concerned abt my deteriorating bones in my spine. looking for a compression fx. I told them I had this, but they left a voicemail to go to an orthop. Dr. Or they could set me up with one there. I needed an answer abt my meds!!!I go back the end of Jan.
I need answers today, that I hope I can get before tomorrow. I talked to the PA's nurse, explained I'm under super amts of stress, and have no idea how much med to take. I've been really nauseated and throwing up, but have used the compazine suppositories.
I've been dealing with my poor dog. He's gone downhill so fast. He loses his balance in his hind legs. His appetie had been good, and is if it's something he likes. The reg vet we'd seen forever said he has fatty tumors that just continue to grow. I went for a second opinion, and that vet suspected cushings. he decreased the huge dose of phenobarb he'a been on for 6 yrs. I lamed the weakness on me since I was too sick to walk him. He falls now, and I can't get himup. His belly is 3 times the size it should be. After laying he has a lot of trouble. He jumped off my bed Sat night, and he hit his feet on the metal frame on the bottomas he fell. He landed right on his big belly. It's larger everyday now. I swore he broke something. But I sat and held him and just cried and he had tears in his eyes and licked my cheek. He makes this noise, not moaning, but hard breathing on his belly.He's been getting so much worse. Guzzels huge aamts of water. Always did, but I have to take it, or he goes till he throws up.Acts like I never feed him. And when it snowed, e was out licking his was around the yard.. I've made a bed on the floor, and hear him trying to get up. Especially on the vinyl.Last night he went down by the back door. He'd had a short walk and talked to a coupl people. But he can't stand long. As I tried to help get him up last night, I saw a couple black makes on the floor. I got some papertowels, it was black BM. I'd seen despite the fluids he drinks, his urine was like food coloring. I calledthe first vet this afternoon to take him down tomorrow afternoon to be put down. I've been crying for weeks. Sick. This is gonna kill me. I didn't call the endo Dr,cause their call back record isn't good. The PA's nurse asked what medication I was talking abt. I said I was desperate, and need to find out how to increase the hydrocort. Even she doesn't have a clue... wondered why did I think I needed it increased. That's why I went to the Endo. I told her Steve maybe wouldn't know either. Then she got huffy and said if he prescribed it, he should know how to give it. I've taken it from the 20/10 that I'd gotten gone down to, by 10 more mgs the last 2 days. She just called and said he said to keep it at the 40 till he see's me in 2 months. I go to the Endo before then.
I don't know what to do,because I'm already a wreck. This isn't gonna be easy for me. I can feel myself going down the way I did before. My Mom insists I should use my emergency injection?? I'd been working on it, but when dad died Christmas I was bad, adrenal crisis from hell. B/P 60/30 for a couple days. So, here I am. What do I do??
Just the crying hs me a basket case. If I didn't have to make the decision. I keep think maybe he'll get better. But when he fell and couldn't move again this morning, I can't watch him struggle to get up. He moans some, when on his huge belly. But he sees me the wreck, and licks my chin, even buried his face in my chest. He never licked, ever. Do they know? It seems he senses something.
He's going to the old vet that didn't do right by him and several other dogs here.Only because he's been there since he was a puppy and knows them all. Then she tells me that if I don't want to be with him, it would be cheaper! That makes absolutely no sense at all. I just had asked what I needed, and I want his ashes. He's not being disposed of!! I gotta get my act together, but I'm haveing a really hard time. I guess I just left myself think he'd be ok. New vet, some answers. Actually the new guy was surprised he was on such a high dose of seizue meds. Plus his sway back, and big belly classic signs. he needed a urine spec for tomorrow, but I must can that appt.
I feel myself crashing and burning now. It's been coming. Now, this isn't going to help me. Sorry all, I just needed to vent I guess. My head hurts, I feel so guilty. And need more meds for the nausea. haven't been able to eat.
Just please remember up in yor prayers! Do you really think dogs go to heaven? I want to believe that!! I need to believe that!

lacey,

You can search for clinical trials at http://clinicaltrials.gov/ct2/?term=adrenal&submit=Search. The instructions for applying are in the study description.