What are you advised? Are you given antibiotics? Have you been told to register with the ambulance service for managing adrenal insufficiency? Do you currently use MedicAlert's wristband?
What also would you like to be advised as protocol? Do you have any suggestions or recommendations for managing adrenal insufficiency?
Please share your experiences and suggestions below.
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I was never told by my consultant that I had ADDISONS as a secondary condition or what to expect how to deal with a crisis if it happened. At Christmas while at a relatives I had a full crisis the first paramedic said there was nothing wrong with me; vomiting/diarrhea/ confusion/ breathlessness/ slow heart rate/ blood pressure shaking icy cold. Then a second ambulance was called which took me to hospital. Once at Hospital I waited 4 hours, by this time I was unconscious. My partner was with me and began screaming only then was I examined and by chance an endocrine consultant who was going off duty and walking through A&E. He took over my care and advised my partner that my condition may have deteriorated too far. I was given 3 1/2 ltrs fluid and 100 mg iv hydrocortisone and oxygen. By this time my blood pressure was almost flat line and my partner was told to expect the worst as I was not responding. The following day I was conscious, the consultant came to speak to me and expressed his disappointment in that only that month he had personally given a training session to the ambulance crews in his area and A&E nurses. YET they all missed the classic symptoms of an ADDISON'S CRISIS. With endocrine failure for the past 7 years whenever I have been admitted to hospital via A&E staff are ignorant of my condition and have had my hydrocortisone stopped each admission; An angel must have been watching over me as it is a miracle I had never previously had a crisis. What is needed is training for all nurses paramedics and even doctors, as I have found doctors generally will phoo phoo endocrine failure as simply an area they have never covered. I think the idea of registering with the ambulance service is an excellent one, as is medic alert bands however they are rather expensive for someone living on benefit with a degenerative condition. Since Christmas I have had two mini crisis each time my partner has adopted a very gentle approach as I become totally disorientated, he helps me to bed gives me 20 mg hydrocortisone and a small full sugar coke, with a couple of hours rest in a quiet room A&E is avoided.
when my son was first diagnosed with ald. His doctor suggest that we talk with the ambulance crew in the town we were living in. That way they would know what to expect if we had to use them. Which I never had too. I was going to get a medic Alert wristband but they were very expensive. James was never put on any antibiotics for his adrenal glands. He never really suffered from adrenal insufficiency, but whenever he had to have major surgery a high temp or vomiting or seizures he had to have stress doses of his cortsol.
Hi brighton88 and bluesweets,
Thank you for sharing your experience.
I am really sorry to read about your experience brighton88, as it sounds like there has been a complete failure to handle Addison's crisis in your area.
You may find a link to GOSH with protocol for Adrenal Insufficiency (Addison's disease) useful: cahisus.co.uk/pdf/ILLNESS%2...
Thanks again to both of you for sharing your experience of managing adrenal insufficiency in your area.
Both boys wear a medic alert band,we double dose for infections (antibiotics) diarrhoea. After vomiting once we give an extra 20mg hydrocortisone if happens again give emergency injection then usually AE, for an operation Iv fluids & steroids always needed, both boys also registered with AE as being steriod dependant & given 1st line treatment. Had a few hiccups in past with either not given enough steroids or to much which has come with complications.
Usually, my brother, Carlerio(AMN), riceive only 10mg of Predisona(cortisona) all day.
Thanks for sharing your experience donnalaidler, lellety and hanika1983.
You can find some useful information about treating adrenal insufficiency on our website: aldlife.org/news-research/l...
My son was just dxd with ADL. We actually were given injectable steroids for emergencies (after which we would go to the ER. School was also provided with xtra injectable steroids is he ever had an issue at school. This is in addition to supplemental pills.
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