I know the people from Great Britain have the cortisol shots. I am not sure where we can get them in the U. S. I am sure Lunarphase, Vanyel, or Misa would know where or if you can get them here.

Have just finally found out what caused my addission's, maybe this will help you too. It was the very last disease they diagnosed for me, and I have multiple, MULTIPLE diseases now in my life. But it turns out they were all caused by the last one that was diagnosed just last Dec., 2010. And that was Celiac disease. I thought I had IBS for years and years. But they finally ran blood tests after not keeping any food in me for almost 18 months. I have the DNA Gene for Celiac and have passed the disease onto to my two grown sons who are in their 20's. They have both just started to show signs of other diseases besides the celiac.. So I am really thankful for their early diagnosis. I am completely on disability for the rest of my life I am so sick. If you catch it sooner the celiac can be reversed, and the addission can be made better.

I had a an addission's crisis for two straight years because of a constant celiac attack and never keeping any food in me for two years. So the steroids are never enough on a maintenance dose. I was only absorbing maybe 50% of my meds. I would go up to 60-80 mg a day of HC when I just could not get through the day and then go back down to 40 mg a day until I thought I might end up in the hospital. As soon as the celiac was controlled I have been able to stay on 30 mg HC a day and am beginning to feel fine, more energy finally. If you have IBS you might have celiac. But if it is just IBS, you are probably not absorbing all your meds, like I was. It depends on how sick you are from the IBS. Something you need to talk to the endo about.

I hope you feel better. My endo told me he sees at least 2-3 Addissions patients a day with celiac. So it is more common than you think. If you have any questions just ask. I know there is a Dr. in New York who is specialist in this. If you want his name and hospital to read up on this I'll post it.

One more thing - on the website for addissions there is piece of paper there that you can have your MD fill out stating you are an adrenal patient. You give it the triage nurse and it gets you into the ER sooner and alerts the ICU/ER doctor that you are a special patient with special needs. Another thing someone just brought up was to wear a medical bracelet. They said with that when you go to triage and they scan that, with Addisson's you go right back to ER, no waiting because we are such sick people. I don't go to the hospital until the paramedics have to take me. We live in the 5th largest city in California, so the ER is always a 5-9 hour wait. It is absolutely horrible. So it is the paramedics or nothing for me (I really just like the sirens!!!). Good luck and let me know how things go.

Lynn

I called up my Endo and asked him to call in a cortisol shot for me and he did. I went to the pharmacy and picked it up for $10 (I have no insurance) and I'm in South Dakota. If you're Endo isn't willing to give you one right away, just explain your awful experience at the ER OR make up a story saying you're going to be out in the backwoods or somewhere help isn't readily available for awhile and would like one. I would think your doc would be supportive in giving you one.

Good luck!

Everyone with Addison's should have an emergency injection at home. Just ask your doctor for a script. And if you don't know how to give yourself injections, get the nurses to teach you how so if you need to you will know. Its not a big deal. But not having it when you need it could be a very big deal. Get your doctor to write a script for you......

The advise from 22Lynn is very good because Celiac disease can be the start of all auto-immune diseases. One thing that many people with celiac don't realize is that when you have celiac the villi in the small intestines atrophy so you do not absorb gluten but "also" dairy and if you do not eliminate dairy along with glutens you will never be able to regrow the villi. In my experience if you eliminate dairy for a year along with the glutens the villi have a very good change of regrowth. Many people can then eat small amounts of hard cheeses on occasion or just eliminate them for life.

Best wishes on your search for health!

This is just not good news. I am a cheese-a-holic. I rarely drink dairy milk, prefer Almond instead. I can tolerate cottage chesse most of the time, but yogurt tends to upset my stomach. i also love bread, although, I do have to cut way back with i t and can no longer eat the grains. For that matter, anything with fiber is a challenge for my system.
I thank you all for your help. I have an appt with my endo next week and will bring this up with him. i am definitely ready to reconstruct my eating habits if I can be done with the bowel obstructions and psuedo obstructions.
God bless, d

My endocrinologist made sure that I received a Medical Alert bracelet that states I have adrenal insufficiency and need stress dose steroids. I'm able to get into the ER immediately and get the steroids. In fact, with my Med-Alert bracelet, it gets me hospitalized promptly - no waiting around for a bed - as the doctors want to monitor me. You won't need any kind of paper from your doctor as long as you have your Medical Alert bracelet. Also, my endo makes sure I'm wearing the bracelet every time she sees me - she'd be horrified if I wasn't! If you were wearing a bracelet and the hospital ignored it, you need to file a complaint with the hospital administration as some re-training is definitely in order. That was a very dangerous situation for you to be in!

Also, I'm on a strong dose of HC but it wasn't working, so my endo put me on Flurinef (sp?) - maybe it's called fludricortisone - and that helped give me more energy. However, I still need to take a 3-6 hour nap every day. Also, I have a service dog that is trained to bring me my hydrocortisone pills when I've been sleeping too long. Believe it or not, but he's smart enough to know when that is! He can tell when I'm in a normal, restful sleep, or if I'm in a low-cortisol-induced sleep. He'll wake me up and I'll feel all drug out, unalert and have a difficult time waking up and he'll shove my HC pills at me. So when I take the HC I find that within a 1/2 hour I start waking up.

As for the cortisol shots, you need to demand that from your endo. Have your husband go see the endo as your advocate and have him insist that you have the shot for emergency purposes because of what happened in the ER. Good heavens! What if your car had broken down in the middle of nowhere and there wasn't a cell tower nearby to take a phone call? I carry extra HC in my purse, in the kitchen, and put a bottle where my service dog always knows where to find it. But you definitely can't keep having those kinds of low-cortisol crashes without having an emergency syringe nearby.

Also, the suggestion to get tested for Celiac is a good one. I have Celiac as well. One suggestion that I must give you: Please eat a couple of slices of wheat bread before you go in for the blood test or the antibodies won't show up in your blood. A lot of people have taken the test and told they don't have Celiac only to be told years later, after a lot of damage has been done to their intestines, that they had Celiac all that time. The reason they weren't properly diagnosed the first time was because they didn't have any wheat in their system to activate the antibody. So please don't forget to do that. Good luck to you!

Spokane - feel very fortunate that your hospital/doctors recognize the severity of situation when you go the to ER. Unfortunately a medical alert bracelet that says steroid dependent isn't a guarantee to fast service in the ER. Many of us of have experienced horrible situations at the ER while in crisis or enter a full blown crisis. So while it should be the norm for us to get in immediately, many ER staff stand around with their thumb up their butt lolly-gagging around as if we are normal patients.
RE: your service dog. If you don't mind me asking, what prompted you and your doc to decide on a service dog to help you with your meds and such?

My dog was already alerting me whenever I was going to faint. Then I would be sleeping heavily and friends would continuously call me or knock on my door and couldn't wake me up, and he would begin to work at waking me up. He'd be so insistent that I wake up and would continue to do so until finally I would groggily come out of my haze and would take my HC and recover. One friend wanted me to live in an assisted living place, but I'm only 55 years old and didn't want to be subjected to that. Because my dog has been so helpful, it became a necessity to have him trained to be a service dog in order for me to maintain my independence as I live alone. When we started the training, of course, we didn't know if he would qualify or not. It is expensive to go through, but it's well worth if if your dog is able to get through the training and able to learn how to do things that will help you with your disability. The fact that he'll actually bring me the bottle of HC gets through my foggy brain that I need to take it immediately. Although I would like to have an injection at home as well, or in my purse.

Well this has been a real eye-opener for me. Recently diagnosed with Addison's just last month. Endo thinks I've had it for several years due to low BP and fainting and fatigue. I asked him about having the 100 mg vial of hydrocortisone and a syringe, and he said if your having a crisis you won't be able to give it to yourself anyway and I don't prescribe them to any of my patients. (He only has 5 Addison's patients) I said what about training my husband to give it to me. He objected strongly. He said he wanted only a medically trained person to administer the needed injection in a medically safe environment. For them to make the judgement call. I was a little frustrated needless to say. Down here in TEXAS the EMS people have gone to the wrong house before. I thank-God for my equipment in the vehicle that I can use to call for help in case of an emergency. I do wear a Medical ID bracelet. First thing listed is Addison's. ( per my doctors orders) I wish my Endo would loosen up a bit and prescribe the injection for me. It would make me feel so much safer when we travel or go boating. TXMaggieMN God Bless you all!!!

Wow, TX, that is just wrong. Your doc is being way too old school controlling. Is there another endo you could see in your area? I wonder if he thinks insulin is too risky for diabetics to give themselves. Sheesh. THat is just WRONG. You have plenty of time to know you are getting into crisis and give yourself an injection before you get so bad you couldn't do it. I dont' know what he's thinking. I think I would seek out another doc. Sorry to hear you having troubles like that. Good luck :)

Thanks, it just happens that he will be leaving this practice and is putting me in the charge of a very good endo. I asked the staff about the new endo and they say he is an awesome dr and great guy.

Seeing the NP tomorrow and going over all this stuff with her. Praying I come out knowing what I should know and not be confused and overwhelmed. luv, d

To TXMAGGIMN,

I would feel very uncomfortable with an endo like that. I wouldn't feel I could talk to them openly or have a real good give and take of ideas on where I was at with my disease. I think with AD that it is really important to have good communication with all of your doctors. We have to know our bodies really well if we want to stay healthy and out of the hospital. My doctors count on me being vigilant in how I feel everyday and taking good care of myself all day.

To lesherd,

Let us know how your visit to the Dr. goes. I hope the new Dr. is as great as they say and you like the new NP. *-* Good luck!

Lynn

Thanks Lynn for the info, but I live in CA up in the mtn.s and my hospital is HORRIBLE. Even was in Stanford and had to sit in the waiting room for 2 hours before they took me back in crisis. The dumb young girl said ""oh yea doesn't hat have something to do with your thyroid" DAH I was so pissed. Up here in the hill it's aweful care and most are coming down to the cities for care. Next e.r I'm going to the city. and none of the hospitals seems to care about bracelets or special letters they just ignore me, and the angrier I get the more I'm ignored. They just are so ignorant of addison's

It is unbeliveable how little the medical staff in ER knows about adrenal insufficiency. My husband even gave them the paper work I printed off from the nadf site for emergency treatment. They still were clueless.
Somehow they need to be educated.

Lynn, I would like the Dr.'s name, address, phone and Hospital info please. I'll do anything to be as normal as possible. Thanks for your comments. I'm going to get checked.