Desperately need help!!

[TSeavert]

My wife has been diagnosed with secondary adrenal insufficiency. This diagnosis was made approx FEB 2007 after many months of Hospitalization. Over the past month she has been getting worse. She was hospitalized 2 weeks ago. Earlier this year she started developing psychosis. At first the episodes were brief, lasting only a half hour or so. Now She rarely gets back to her normal mental state. She is also starting to conract on her left side with her arm and hands and left leg "drawing up" when in these episodes. I have had to take her to the ER 3 times in the last 2 weeks. 2 times we had to call an ambulance because she was incoherant and couldn't move or speak. I have had to give her the "emergency" solu-cortef injection twice because she was unconscious. The doctors here say there is nothing they can do. I spent almost all night at the Local ER and the only thing they did was the normal blood tests and give her pepsid for stomach pain.

I need some help ... please

[rumpled]

Sounds like she needs more salt and florinef. if she is having that many crisis', she cannot control her sodium. Usually florinef, not the cortef, initially, can be the source. Does she take florinef (fludrocortisone)?

Also, cortisone acetate is not usually used to treat adrenals as the half life is too short. She should be on regular hydrocortisone and a normal replacement dose is around 20mg per day give or day 2.5mg. per my doctors. I have no adrenals and take 20mg in divided doses.

http://www.addisons.org.uk/info/manual/page1.html may give you some help

http://www.rxmed.com/b.main/b2.pharmaceutical/b2.1.monographs/CPS-%20Monographs/CPS-%20(General%20Monographs-%20F)/FLORINEF.html

My favorite steroid calculator is down.. boo...

What about salt tablets? Not buffered as she does not need potassium. I can only get them on one place on the internet but I take 2 grams a day. I buy the 1000 tablet bottle.

Oddly, I also started acupuncture and it helped stabilize me as well. My practitioner is a medical doctor and that also helps. An idea - not something for everyone.

[calamfred]

Hi,
I don't have Addison's, but my husband does. According to his Endo, if he has any signs of a problem, we call the Dr., ambulance, and head to the E.R. From what I have found, most with the A.I. are on hydrocortisone, my husbands is divided into 3 doses every day, and it has been a trial and error as to the dose, but he is on more than your wife, I know it is different for all, but needs to be monitored closely...wish I could help you more, I think you are on the right track in getting her into a diff. Endo, I think it is imperative that you have a good Endo...Is there another ER around you all, until you can get her in to another Dr? Is she "stable", now?? I cannot imagine a Dr. saying what your wife's said...Please keep us informed about how things are, and we a praying for both of you, I know when your spouse is ill, you are in it together....
Take Care

[stella5349]

O M gosh - how aweful for a doctor to say that about her!  You sound very supportive on knowing what she is on and what's going on.

I wish you luck at the university.  You definately need to see another doctor.

It sounds you have tried to research as much as you can on this. You need some guidance from a qualified doctor.

Oh my Lord - I am just overcome by the comment your doctor made.

Please keep posting on her situation.

[TSeavert]

We are in SC. I am gonna try to get an appointment with an endocrinologist at MUSC, which is the medical university here.

As for getting her in to see her endocrinologist.... I immediately called him after I had to give her the first injection. Please note that this was the first time I have ever had to give her the Solu-Cortef injection. His response was that he didn't need to see her.

I don't think that she has been getting enough Cortisone. Her dose (Cortisone Acetate) was reduced about 6 months ago from 25mg in the AM and 12.5 in the evening to half of that, 12.5mg AM and 6.25mg PM.

He states that the Psychosis could be caused from the cortisone acetate and that she should be "committed"

Some doctors that I have talked to seem to think the dosage of cortisone is too low to be the cause of the psychosis.

Her current meds are : CA, Geodon, Klonipin, MAGox, Multivitamin, OScal-D, Wellbutrin, Zantac

Thanks for the replies and support.

[stella5349]

Yes find a specialist. You may find a whole of help at your university hospitol.

Where are you located at?

[PlateletGal]

I agree with enzymelover ! And remember... you can fire physicians (even if they are caring for her in a hospital).

[enzymelover]

   You should get her in to see her endocrinologist asap, or a neuro-endo might be better.
Is your wife on medications that could be aggravating these episodes?

Taking her to the ER was the right thing to do, but it sounds like there is something neurological going on that needs immediate medical attention. Who said there is nothing they can do for her? She needs care. Be insistent with her doctor. Call an endocrinologist asap.