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Addison's Disease Message Board


Addison's Disease Board Index


Hi Terry,

I'm so sorry to hear what you're going through...in some ways i can completely relate. I understand the crashing horribly during the night and feeling awful in the morning, and I also understand the dehydration (which in itself is exhausting).

But to give you hope, I don't think you're being treated adequately with medicines. You didn't mention whether or not you take Florinef or fludrocortisone. This is the mineralcorticoid which is always prescribed along with cortisone replacement. Fludrocortisone is what enables your body to maintain appropriate electrolyte balance, mainly hold onto sodium. I cannot imagine how I would feel without this, as I still dehydrate easily "with" it.

And for your steroid replacement, you might want to discuss with your endo transitioning from HC to a longer-acting steroid, i.e., prednisone. I have experimented with this over the past year in hopes of not feeling so awful in the morning. Well, actually I was waking up in the middle of the night often feeling like I was in "crisis mode"... low on cortisol so I needed a longer acting steroid to get me through the night. I know that HC is easier on your body, but I also feel that it may be equally as hard or stressful on your body to not have adequate cortisol. And not to mention how critical good sleep is for people with any degree of Adrenal Insufficiency.

So currently I am taking both HC and prednisone. I take 10 mg HC upon waking, 10 mg HC about noon, 2.5 mg prednisone (equavalent to 10 mg HC) at 5pm, and 1.5 mg prednisone at 7pm.

Anyway, I do not know the level of Adrenal Insufficiency you have so your replacement dose will be dependent upon that. You mentioned in your post that your endo wasn't "very good at this stuff". I encourage you to find an endocrinologist who has a better understanding of this very serious condition. As you know, Addison's Disease and Adrenal Insufficiency can be life-threatening and so must be treated appropriately.

Your endocrinologist is supposed to advise you on how to stress dose, and also on how to gradually wean back down. Stress dosing is usually dependent upon the stressor being treated.

Lastly, I'd like to recommend two great books which have helped me a lot over the years :

1) Adrenal Fatigue - the 21st Century Stress Syndrome by James Wilson
2) Overcoming Adrenal Fatigue: How to Restore Hormone Balance

Anyway, I hope you are soon able to find some relief and regain your strength. I absolutely know how difficult this can be to live with, but know that you will feel more alive once you arrive upon the right medicines and perhaps modifying other things in your life. There is so much involved with maintaining the health of adrenal glands : diet is very important, no stimulants, adequate rest, healthy relationships, moderate exercise, etc. Please try to get the books mentioned above.. they've been incredibly helpful to me.

Wishing you all the best.

Sincerely,
Mollie





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