Adrenal Crisis Story

Hello, I'm attending the National Association of EMS physicians conference on behalf of Adrenal Insufficiency United. We will be asking the organization to create a "Standard of Care for Adrenal Crisis" I need your adrenal crisis story for the booklet I'm making to hand out. And...If you would be able to fill out this quick survey that would be a big help as well. http://www.surveymonkey.com/s/TPP8BGG

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Before I was diagnosed with Addison's Disease in 1995, I had lost twenty lbs, my complexion was pale and ultra- tanned simultaneously and I could not eat. I knew there was something terribly wrong but doctors kept insisting it was a "psychological problem". I insisted they take blood tests. Finally, a crisis developed where I needed to be taken to Harvard Vanguard in Boston; HV sent me to nearby Arbour Psychiatric facility. As I was being checked in, the registration clerk rushed out of her office and informed me that my latest blood test showed a dangerous sodium deficiency; they were delivering me to Brigham and Women's Hospital by ambulance.I remember thinking," At last they are taking me seriously!" At Brigham and Women's Hospital the E.R. doctor asked me many questions. I was mentally confused. After that, a team of doctors decided I had Addison's Disease (to be confirmed later by a test) and started giving me hydrocortisone. That was the beginning of my recovery. And with my insistence on blood tests, I may have saved my own life.

I am now for the most part a healthy eighty-one year old woman who plays doubles tennis regularly.

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Thanks so much for sharing your story! I'm glad you are doing so well and insisted on those blood tests.

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Thanks for your reply.

I now have mixed feelings toward the medical establishment. On the one hand, the hydrocortisone pills are literally keeping me alive. On the other, I probably wouldn't be alive today if I hadn't trusted my own intuition.

Also, I'm well aware of the corrupt link between medicine and the pharmaceutical companies. Years ago I witnessed it first hand when I worked for the ad agency that serviced Phizer.

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I can understand that. I've heard so many horrible stories of people in crisis that were not given proper treatment. My opinion is that Adrenal Insufficiency is just not understood by physicians, they are not trained well enough as to what it is or how to treat it. Some EMT's I know have never been given training in it. So what my group is trying to do is raise awareness in the medical field. My hope is that by reading these "Crisis Stories" the doctors will see that this is a REAL problem and be open to fixing it.

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Shared a while back, but will repeat.... last yr at this time, probably longer.... started getting very ill. Couldn't walk, lost 20 lbs.... vomiting when I COULD eat food....went from one dr. to another.... no answers... KNEW there was something wrong. Feb of this yr. ended up in hospital.... diagnosed with the lowest sodium levels seen in ER. Spent 3 days being pumped with sodium..... sent home w/sodium pills. Little improvement. My primary dr. sent me to a "very good Endo. doc." Had a CRISIS in his OFFICE..... and him, gave me some water, had me sit in waiting room while husband got wheel chair from lobby. His thought.... cut down on sodium pills, and sent me home! I started doing my own research, and knew I was adrenal insufficent... HAD to find someone to listen, test. Found a dr. that was going to POSSIBLY give me ACTH test..... after she returned from leave for a month. Finally, my RA dr. (yes, have that too) recognized how I needed to be seen immediately.... made appt. with another endo. at U. of Rochester.... within a week! (God Bless him forever!).... and first visit she knew that I do have AI, gave test, and now on hydrocortisone... felt better almost immediately..... still trying to regulate right dose... 10mg AM.... 5mg PM.....get tired easily, can't do all I could before, but found someone AT LAST to LISTEN. Can't stress how important being pro-active in your health is. So many "experts" seeing you...... without seeing, listening at all. MUST CHANGE!

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Should have added..... now wear a Medic Alert bracelet..... carry ID card, printed out NADF sheet, carry in car, at all doctors... including dentist... hospital, and have local EMT's aware of my condition. Feel a little more comfortable knowing, hoping if I should go into crisis, they will use the info... act on it.... means my LIFE!

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Thanks so much for sharing. I hope it is stories like yours and many others I hope to get that will help convince the National Association of EMS to write "standards of care" for Adrenal Insufficiency. You're story should not sound so familiar, the fact that it does is frighting. Even those diagnosed do not always receive the treatment they need!

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My story is similar to pekemom. It took a long time to diagnosis. 2 ICU stays , heart rate 140 in physicians office. Kept getting antibiotics for an Infection that didn't exist. I diagnosed myself and found that one person -an NP who would listen. After dx got the ID bracelet and all. Went to ER a year ago - first time since dx. I had a migraine and vomiting. No reaction from any of the staff re dx. Only concerned with the headache. I do not feel safe going to this hospital again. The bigger teaching hosp. Is farther away and in a crisis time is of the essence. A new fire station is just around the corner but this probably does not matter either.

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Meowmom.....I'd love to use your story if you'd like to add more details about your ER visit.....As to how they reacted when you told them about being AI etc.

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Luckily , the ER was not busy so I got in quickly. Too weak to walk. I got morphine and a CT scan for the headache. When I and my husband indicated I was headed for a crisis nobody reacted either in the triage or in the ER. Once the morphine kicked in I could get the oral meds down. Next time I may not be as lucky.

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My daughter had a rare NMDA receptor encephalitis. She had 2 months high dose prednisone treatment when they decided to taper her down. They went down 40 from 60mg which caused her movement attacks to increase in frequency and severity. A dose of 60 mg solumedrol was given (and her dose upped to 60mg)upon my request which calmed her down for 2 days. Since the doctors did not believe that the worsening movements were due to the steroid tapering they did it again going down to 15 mg in 2 weeks time. The movment attacks came back with a vengeance! As they were tapering. I had to talk the doctors to increase the steroid dose back to at least 40 mg. This did not help much so they increase further to 50 mg. My daughter is now slowly calming down. After 1week at 50 mg. I don't know how long her brain will recover from the withdrawal trials. Its sad that the neurologist, 3 intensivists, and the hospitalist do not believe that steroids can actually cause physical pain and resurgence of physical complaints from her encephalitis. they know steroids are bad for the patient and they know to taper. But the finer details on how to use this powerful drugs and manage sideeffects is lacking.
Its scary since they use it like water for their patients.

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Dear Candlelight,

First of all, I take 25 mg. per day. 40 sounds like too much to me; some patients take as little as 20; I started with 30 but it proved to be more than I needed. It's important not to over-medicate because steroids over a long period of time can cause side effects including osteoporosis.

Second, you should be able to ask any medical professional a question and be answered with respect. I am more and more finding that we patients have to fight and even sometimes risk being obnoxious in order to get the medical care we deserve. Frankly, I do not understand why nobody has answered your very reasonable, simple question.

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My Endo has me on Hydro. 15mg, day.... Take 10mg when I get up, 5 around noon.... Most days seems to work for me. Said I could take 20mg/day, but didn't want me to unless unusual stress, sickness. Perhaps because of side effects? Won't be seeing her until Feb. to ask. Does seem to be smaller dose than many are on, and wonder if she will up the dose? If I am very active doesn't seem to be enough.

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My understanding is you can take up to 15 mg a day and still maintain some adrenal functioning. It is a supplement rather than a replacement

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Peke-Mom, 15mg is on the low side of dosing for hydrocortisone. The most common range is 15 to 30mg, with most of us in the 20mg to 25mg area. This is duplicating the body's normal production level of cortisol which is 12 to 19mg per day, on days where there is no significant stressors on the body, like a viral infection or heightened activity. A healthy body will double the amount of cortisol produced very quickly under even moderate stress. The adverse side effects of hydrocortisone or prednisone you read about are from much higher doses over long periods of time. You can try a different dose for a few days to a week and see if that ability to be a bit more active.

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Thanks for the info..... 15 mg. many days is just "hanging on" for me. Will give it a try... was afraid of taking too much. I think my Endo. told me my adrenals are working at 2%.... pretty much not at all!

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Thanks to everyone for taking the survey and sharing your experiences. We will be attending the National EMS Physicians conference January 12 and taking the stories, survey results, petition signatures and other materials with us. We are excited at this opportunity to raise awarenss of Adrenal Insufficiency with the 500+ medical professionals in attendence.

Happy 2012 to you all!

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