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Addisons Help!!! Desperate

does anyone have Addison and has had a crisis?  what hospital anywhere!! was best I find that doctors are not completely educated on this and I NEED HELP NOW! any suggestion please
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Avatar universal
COMMUNITY LEADER
Yes.

It is best to prepare your family and friends so they can advocate for you. My husband is *trained* to be insistent about my stress dose.

Do you have an emergency kit?

Do you have a letter from your endo stating what should be done in case of crisis, what a crisis is, and contact information? Not that this always helps... I had a resident decide that I was not having a crisis (I clearly was) and not bring in the help I needed. I almost died.

I also advocate emergency bracelets like medic alert.

Mostly, it takes family and those around you to be educated so that they know, and that you take steps to avoid a crisis (stress dosing, upping sodium, fluids, etc.).
695104 tn?1442193588
Agree wholeheartedly with rumpled.
My hubby has Addisons and MS, and according to his Endo a rather severe case of Addisons. He has been unable to take Florinef due to hbp, so is on Cortef only. His daily dose of it is 40 mg, divided into 3 doses thru the day, to try and replicate as much as possible a "normal" cortisol production.

Hubby wears a med alert necklace and now we both carry a paper signed by his Endo stating exactly what he needs when in crisis...which he seems to have a crisis every year. I also call an ambulance, as you can't afford to be waiting in a waiting room for hours when a crisis hits. The 1st crisis my hubby had we waited and waited, then the Dr only gave him 20 mg of hydrocortisone..much like rumpled's story, it was awful!

I eventually went "Shirley Maclaine from Terms of Endearment" and got hubby the 100 mg IV bolus he needed. After that crisis is when his Endo and us decided what we needed..and now we carry the signed instructions with Endo's phone # and I call for an ambulance and call the Dr.

Honestly, I work in the medical field, but seeing an Addisons crisis is a scary thing to witness..and my hubby's are often "out of the blue". So not knowing what to do to try and avert it is frustrating. We know about "stress dosing", but with MS it's hard to know sometimes which it is...Addisons , MS, or something else??..

My hubby is fortunate that his Endo also has me call him as soon as I have called for the ambulance, that way the Endo calls ahead to the hospital with instructions. Endo Dr's wife has Addisons, and he also had a family member who died from complications of not getting treatment for a crisis, so he is an excellent advocate for us.

Hope you feel better soon,
C
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