Well you have come to the right place for support and advice. Everyone here is very welcoming and has a lot of experience with Addisson;s. And just like you, we all feel like the Dr. could just keep it and not give it back to us. Addisson's is a crappy disease to have.

Keep your appt with the endo as soon as possible. The sooner you get treated the better chance you have of living a more normal life. And possibly being on less steroids to make up for the lack of cortisol that your body is making. The lack of cortisol is making you very tired, which is a huge complaint among adrenal failure patients.

If you do have adrenal failure you need to get very educated about the disease. You really have to be your own advocate. Also get your endo and primary doctors to get as a team, so they both know where your health status is. I only see my endo once every three months now that my addisson's is under control, if you can ever really control addisson's, LOL.

Like you I have multiple health conditions to deal with. But the adrenal failure is the most serious. But you can go into an adrenal crisis, and that is really life threatening. But once you are on the meds, and you learn your own body and how it reacts to the steroids you will very quickly learn how to read what are the right levels for yourself. And know when you need to bump up the dose of steroids in times of stress or illness. Or if you want to travel and need the extra energy your body needs for the travel.

There is a national website, NADF, that has a ton of information on it. And there are regional support groups across the country that also can help. I believe AlabamaBMW has all the support group information.

The hardest time is the beginning because everything is so new. But if you educate yourself and go the Dr. with intelligent questions about what you want to know, and how you want to proceed it will make you much more calm, and in control of the disease, or at least as in control we can be of this disease. And if after the first or second visit with your endo, you don't feel like they are treating your adrenal adequately (like most people on this web site) find a new Dr until you find the one for you.

Let me know if you have any questions. I'll be on line again later tonight or tomorrow. I look for you. Good luck.

Thank you Lynn for the advise, don't know what questions to ask the endo yet. There is just on thing more I wanted to ask you, is there any other drug for Addison's that isn't a steroid. I am afraid of taking steroids ... everyone I know who is prescribed steroids gains weight, is it the same with steroids for Addison's?

Love, Light, and Chocolate,
Alicia

Hello

Yes ....you do need to learn about this disease as some doctors will ahve your head spinning. It is hard at first, but once you learn about the disease it gets little better. Then you will know what to do and when. I have other autoimmune disease with it so it is very challenging for me. Plus chronic pain, but I am doing ok. I have few good days and some bad days. You sort of get use to it...sad to say but you do.

Make sure you get supplements, Vit. C, B and Multivitamins, essential amino acids etc to keep health right.

Linda

Hi Lindees,

Thank you for your advise ... but you said the magic words "a few good days." After nearly six years, I haven't had one good day and your statement offers me some hope.

Thank you,
Alicia

Sorry I didn't reply sooner. But i ended up in the hospital for 4 days, part adrenal crisis, part dehydration from what they think is going to be diagnosed as Celiac disease (first thought to be IBS, like you). It is really important with adrenal failure to keep your electrolytes balanced with the IBS. That is what put me in the hospital. I hope you have seen the endo since your first posting. Let me know what has happened. I know what it is like to have more bad days than good. Hopefully with a good Dr. you can start having some good days in there too. Some people haven't had the weight gain, but most people have. The important thing is to take is little of the steroids as possible. Most of us take about 20 to 30 mg a day, taken over the course of the day. Trying to mimic what your body would do with cortisol if we had any. I am sure it is really hard with the chronic fatigue, and IBS. It seems we all multiple problems on this site. Let me know how you are doing.

Alicia,
YOu had asked if there was anything else to take for AD besides the steroids. THe answer is no. Cortisol is steroid. It is essential for life in so many different ways. Hydrocortisone is chemically identical to cortisol and thus the best replacement you can take. The tricky part is figuring out how much to take and when. It is unfortunately impossible to mimic what your adrenal glands would do if they worked. We just have to do the best we can. But you must have the steroid to live. No natural products or herbals or other drugs can give it to you. Sorry. I hope it works out ok for you. Best of luck.

Vanyel