Addison's Disease Support Group

Jeep,
If your doctors are not listening to you, you need to get new doctors. They should be answering your questions and working with you - listening to what you have found out and responding. There is no excuse for them telling you you read too much. That is absurd. That is just a doctor that wants to maintain control and his god like image. They make me so mad. Just tell them what you are feeling, what you have reasearched and found out, and what you think. Let them try to explain why they think you are wrong if they do. If they can't and resort to telling you you read too much, then it is probably their own thinking that is wrong. There are good and bad doctors out there, and you do have to be choosy. Treating this AI stuff requires a good relationship with your doctor so you can work together to find the best treatment for you.

As for adrenal crisis - a trus crisis would land you in the hospital. I think those of us with AI move a bit more slowing into the crisis thing than those with Addison's. We can often get by at home as long as we can get more steroids. Still, it can be a life threatening thing and is nothing to trifle with. If you can't get steroids in you need to get to the hospital. Most of us have an emergency kit at home with injectable steroids for such times. It sounds like you got into trouble because your dose of hydrocortisone was inadequate. My doctor lets me adjust my dose as i need to. Perhaps your new doctors will be more helpful. I think we have to have control of how much we are taking as it often has to vary from the prescribed amount.

Anyway, good luck with the new docs and let us know how you are doing.

vanyel

I totally agree with Van. Just be careful with adjusting your own steroid dose. You don't want to take too high of a concentration for prolonged periods or you'll be succeptible to side effects.

Regarding the comment on the higher doses of steroids: I know! I DO NOT WANT TO BE ON THIS HIGH A DOSE! Honestly, I would have to look at my calendar but I don't recall being on this dose before even when i started the hydrocortisone ( by the way, I am the one who asked my endo about switching from prednisone to hydro!) The few times in the past that I have called an on call dr due to weakness and fatigue they have bumped up the steroids "for a few days" like 3 at max. Now this time I have been on this dose since the 9th and my endos ofc said to stay on it until I am seen ( I am scheduled 9/9) ( They do not know that now i am going Thurs to a new endo for a second opinion).
I think last night I forgot my last dose of steroids. I do that sometimes and while on the 10/10 regimine that was not a huge deal.
I am just afraid that I fried my adrenal glands with the stimulants and now am going to require higher maintenance doses.

Just a quick note. Once the adrenals are fried, they are fried. The need for replacement will not change. In other words, you won't make it worse for having taken the stimulants. If you still had some adrenal function, then it might make things worse.

Vanyel

Well, we thought ( let me say my dr thought) my adrenals would bounce back as I slowly tapered down off the hydrocortisone and that the goal was to get off all steroids.
Now, however, I have the feeling that will never happen.
It is like the chicken or the egg question ya know? Was I adrenally suppressed before or after?
So will see what this new endo says on Thurs. GOD I HOPE HE KNOWS WHAT HE IS DOING!
Honestly, I feel like walking in and asking him one question: "Are weakness, fatigue and weight loss symptoms of AI?" If he says YES I will stay. If He says NO I feel like walking out! HA!

Jeep,
If you still have some adrenal function, then the goal would definitely be to try to get them functioning again. A hard thing to do as you have to take replacement to live, and replacement shuts them down. Tapering off sometimes works, sometimes doesn't. Its a sticky game to play. I think the longer they are shut down, the less chance you have to regaining function. I sure wish this were more of an exact science. Good luck with the new doc.

Vanyel

How do I know ( or do they test you) to see if the adrenals still have some function left? I seemed to be doing ok most of the time while I was tapering down...I was doing it 5 mg/month.
But then this lastest setback which started about 6 weeks ago..I was on the 10/10 ( soon to go to 10/5) and as I have said my theory is that the stimulants and some stress may have set me off. I don't know.
If there are tests ( other than cort stim tests which I have not had done in a long time) I would like to know!

THe tests to check the adrenals are the cortisol levels, DHEA levels, aldosterone levels, and the ACTH Stim Test. THe stim test is the main one, shows if your adrenals respond to the proper sitmulation, and how much they respond. THere are more tests endos use to pin things down, but those are the main ones.

Vanyel

Jeep, I hate to have to say this but I feel it is necessary. I really feel strongly that your doctor was barking up the wrong tree blaming the steroids for your AI
Since it seems so obvious you already had problems before hand and they just never picked up on it, this is a permanant problem for you.
You REALLY need to talk to the new doctor about this and work on accepting that you need to work on trying to find a balance that works for you and NOT keep trying to stop your medications.You'll only get worse if you keep doing that.
Please do ask the new guy if he is willing to test your other hormones too just in case you know?

Well, I tend to agree that maybe this was an issue prior to the steroids and that the steroids just made things worse.
IF I have to stay on steroids to live, I will, of course. I was just going by my current doctors opinion and advice that I was " adrenally insufficient due to prolonged steroid use" meaning the prednisone ( which I was only on from Feb 2008 to maybe June 2008?).
And as we know now, my faith in him has nosedived.
I will speak to the new doctor about checking ALL levels and see how he reacts.