Adrenal Insufficiency Support Group

Well I found a lady who lives in the town 20 miles away from my house. It is the closest city to me, so I was excited. She is a teacher like me, and has been on medical leave most of this year.

She went to the Mayo Clinic and they dx her with primary AI, and a few other things. The Dr. there told her she was going to have a hard time ever working again, (Which I can relate to, If I could get disability I would do it. I think the fact that I have to work to survive is part of the reason I'm having such a difficult time getting a handle on this.) They also told her she would always have headaches, be nauseous, be weak, and have achy joints those things are just a fact of life. These are the same things I was told at Stanford University.

She has been going through many of the same things I have, where the HC totally helps, but We still don't feel okay. It's like something is just out of sink.

Anyway when I listened to her story, I heard mine, except the Dr. did not try to cure her by trying to get her off HC and just see if my body would kick back in. Like me all of her friends were always trying to send her to new dr, or find cures. At one point she finally gave in and went to a Dr. that runs a Quality of Life Clinic. He is a real licensed American internal medicine Dr, but he also practices non-western treatments, and the clinic combines his treatment with a nutritalist. His goal is to treat the whole person.

I have actually been looking to a nutritionalist, because I am a strong believer that whole natural food can make a person feel better. IMO, Our bodies have not evolved enough to survive on processed food filled with chemicals, and bio-engineered food. Before I got sick most of the food I ate came from local farmers, and all food was made from scratch. That is not true since I got sick, because I have not had the energy to go to the farmers market, University Farm, and visit local farms to shop. Now most of my food comes from Trader Joes, or a local organic store in town. But it defiantly includes processed food. So I have been trying to find someone to help me, and that is how I found this person. She had told one of my other friends about how a new diet changed her life.

She told me that unlike the local Endo's (there are only 2, and she has the other one.) the Dr, tested her and worked with her to get the right dose of HC, and space it correctly throughout the day. She said this took awhile, but she feels like it is finally doing what it is supposed to and she feels a lot better. So good she wants to go back to work, but the Dr said she is not ready yet. She also worked with the nutritionalist. She gradually after 3.5 months she is still working on it, but basically she is on a mix of the Palio Diet and the low Glycemic index diet. She says that this Dr. has changed her life, and gotten her out of bed.

I made an appointment with him for the 26th. I have considered doing this for months, but I was worried hi ideas would be too radical for me. My biggest worry was that he would try to get me to stop taking the HC, and try some alternative treatment. She said that was not what he was about, he looks to make western medication work better, and combine it with a good diet. I am so glad my friend had her call me. I hope he can make me feel better like he did her.

We are going to meet, after I see the Dr. It will be nice to have someone I can actually talk to that can realate to all the things I'm going through. Most of my friends try, but they really don't understand what I'm going through, and some totally avoid me, like I'm contagious.

Hi Rebecca

I have a slightly different slant on such steps as nutrition and diet etc changes. Note this is only my opinion. I have no real data to back this up, except logic and a common sense of sorts.

Remember when you were all kids and had those "cast iron stomachs"? ie you had a bulletproof metabolism, could eat anything and rarely suffered from it. Well that's simply a system in total that works closer to the "desired spec". Like any system too it has to be regularly "stressed" to keep it at the top of its game. You know these parallels in things like exercise/fitness and mental acuity.

If you have a failing system that refuses to repair itself you have a really good case for lowering the glycemic index or what you eat, having smaller meals more often, and eating food that is less likely to cause you problems. If you are talking general system wide degradation then this is more or less your only course.

If however you have has a major system failure (like us lot) that is being treated for what is missing, you have to consider that maybe just maybe the dietary etc changes have to happen because the treatment isnt good enough. In essence it's a bandaid solution that is better solved by fixing the root cause.

Cortisol and the pituitary friends that get involved with insulin set how well you can handle peaks in food sugars. ie if you eat a high glycemic food a "good" system will do well to process it. I'd even suggest that by spreading your food intake and going for low sugars you are in fact not stressing the system enough to keep it in good shape.

Yes its kind of contentious but is in fact the way I do things. I certainly eat good foods but I dont go all the way to less refined or low glycemic. I am not advocating you dont eat well or do what works for you, but its incredibly important to get the steroid etc treatment as perfect as you can. My big concern is that if I went to a less digestive stress lifestyle I would indeed have gradual system degradation to the point that one day even that wouldnt work any more.

It would be interesting to find out what your friends steroid dosage pattern is. Did some doctor just get it wrong maybe? Oh if she had primary AI, weaning would have had an almost zero chance of success. Its only ever really successful if its secondary.

Bob

Thanks for your reply. I have not made a decision to change anything yet, just to go to a consultation, and see what he has to say. But if he could get my HC dose right (which I am sure is not, right now), then I want to try. You make sense, and I do agree about the never stressing your body part, it might forget how to work. It's like the new studies about too much hand sanitizer, making it harder for the body to build up immunity to common germs we are exposed to.

On an okay day she said she ranges from 30-37.5mg, in 3 doses. She said she is getting close to a good day but has not had it yet. Just everything is a lot less bad, has more energy, and she has gone 3 days without a headache.

I agree the weaning did not work at all, just made me sicker, and I'm still trying to get it right.

I've just been sick so long I'm willing to try anything.