Addison's Disease Support Group
Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone
I was diagnosed three and a half years ago. I am on a higher doseof HC than most because I just cannot function on less. With medication and time, I thought I would get close to being 'normal'. Instead, I find it a fight eveyday to get up and get going. Some days, even weeks at a time, I can feel really strong and be productive, but then comes the down times.
End of March, after a ten day vacation in CA with kids and grandkids, I got sick the second day home and was unable to take my HC. By early afternoon when I realized it I was already starting a crisis. A couple hours later when my husband got home from work and took me to ER I was in crisis. Not too bad yet, but not able to speak much for myself. I had a fever and intestinal and liver infection which did not help.
Why is it when you tell the ER you need to get a stress dose of cortisol asap, they say they understand, but still take time gettng to the IV? I did ok and by the next day was feeling more human.
Does anyone know about the cortisol injections? I am thinking that would be good to have on hand in these cases since I do have digestive problems and get nauseate occassionally.
Thanks for suggestions, advise, encouragement. I am tired of not being the person I once was. Misplacing things, getting ovewhelmed over nothing, etc. d
End of March, after a ten day vacation in CA with kids and grandkids, I got sick the second day home and was unable to take my HC. By early afternoon when I realized it I was already starting a crisis. A couple hours later when my husband got home from work and took me to ER I was in crisis. Not too bad yet, but not able to speak much for myself. I had a fever and intestinal and liver infection which did not help.
Why is it when you tell the ER you need to get a stress dose of cortisol asap, they say they understand, but still take time gettng to the IV? I did ok and by the next day was feeling more human.
Does anyone know about the cortisol injections? I am thinking that would be good to have on hand in these cases since I do have digestive problems and get nauseate occassionally.
Thanks for suggestions, advise, encouragement. I am tired of not being the person I once was. Misplacing things, getting ovewhelmed over nothing, etc. d
was a horrible visit. I am reporting them to somewhere and keep filling out he questionairs of what a horrible hospital they are. If your in crisis and they are taking their time, start popping your own cortison, gotta do what you have to do.
I always have to carry a cortisol injection with me, and it has saved my life numerous times as I go nto crisis rapidly. I suggest that every Addisonian carry one. They are really easy to operate and with a perscription you can get them at any pharmacy.
Yes, I have the injections too off Dexamethasone. AND the big needles that go in deep. YIKES! Luckily my husband is good at giving them. I've done them with the small diabetic needles but I know the big ones are the right ones to use so I get my husband to do them when I can.
PS: In your picture you look just like my niece.
Sunshine
His motto has been useful though "Ifyou feel yourelf slipping take 20mg and ask questions later.
I had a horrible crisis 3 weeks ago which has left me feeling anxious andwobbly ( am under severe stress at the moment which
leaves mein a mess for reecovery)
My work colleague was terrified whe said later I looked so weak and grey. However by the time I got to the doctors my BP was normal....the 20 mg had kicked in. It takes about 20 miinutes to work, Prednisolone used to take an agonising 45 minutes. It is very difiicult to convince a medic then that you have not just had a panic attack. ...They should try going there!! Hower I am not prepared to just go on sinking until someone decides what is wrong - the feeling is too terrifying. 20-30 mg so far has pulled me out. I put some under my tongue hopefully for faster absorption. With a compromised gut I can see the vital need to have injection on hand and feeling the way I did 3 weeks ago would not have hesistated.to inject.
A
I went to my new Internist up here in Minnesota and he said it was just wrong too about not having a Emergency Injection. He gave me a script with 10 refills so I will have enough to take and get refilled in TEXAS...I use Walgreen's and I can transfer the script to down in the "Rio Grande Valley." Where I live in the winter-time. I used to be a "Paramedic" before severe back injury put me on disability many years ago. With my "Brain Fog" I forgot what size syringe to purchase...Might it be a 22 gauge, for the thigh injection? I used to give myself Droperidol Injections in my thigh for migraines and I think I remember using a 22 gauge. Thank-you all for your help....and I am so blessed to have a REALLY DEDICATED doctor for the 4.5 months I will be up here in the "North Woods" !!! ~TXMaggieMN~
I believe I read a post stating medic alert bracelets are insufficient, when it comes to rec'g proper ER treatment. Just to clarify, Medic Alert is not just a bracelet, although one is provided. It's a computerized medical system, which stores vital info, accessible by every hospital. Although a patient controls entries, one's MD can particpate, to include crisis protocol. It's truly a great system, which can't be ignorned, nor refuted by practioners. When we're too ill, or incapable of explaining things, ER Admissions can access necessary info, to speed up the process, so we can receive prompt care.
Maggie-I believe a 25 gauge is the recommended size, smaller than 22, less pain!
You can find another doc on the website for the American Association for Clinical Endocrinologists. They have a database that will allow you to search for endos (also those with experience with adrenal disorders) in your area.
Hope this helps!