I don't have addisons, but have serious adrenal problems and have addison like crisis'.
So I came here, hoping you will understand.
I have been on HC for a couple years and only under stress have the severe crisis.
I got very sick a month ago with a gastro thing and one day later ended in emergency. Could not stop vomiting and they could not stop it. I then told them it might be adrenal related. They gave me 100mg shot of cortef and it stopped.
So since then, I have been trying to survive and understand stress dosing.
I crash in my sleep and get so weak that in the morning, I can hardly move. Have any of you had this experience? It has been a month. The illness is gone at least a week ago, but I am still in bed.
I lost 13 lbs and taking 30 to 40 mgs HC now daily and keeping my weight off still while being in bed. Something isn't right.
I am 57, raised nine kids, five are adopted and have some special needs. I have dealt with alot of stress in my life. I need so badly to get back up though and feel well.
Oh also I get dehydrated so easily. Taking maybe half tsp sea salt two or three times a day and water still goes right through me. I drink alot though.
When I take salt and water, my body tingles alive.
This is tough and I sure would appreciate any help.
I have an apt. with my doctor and my endo next week, but neither of them fully understands this stuff. Thanks, Terry Mom who just wants to get well.
OH BTW, only one child still lives at home and she is almost 18. AND prior to getting sick, one adult son was in ICU for a week and it was serious. MORE STRESS.
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.
Oh Mollie, what a blessing you are. I am in Columbus Ohio and have researched Endo docs like crazy and a good one does not exist. I am not well enough to travel.
I am in touch with Dr. Teitlebaums info all the time.
My diet is and has been for years, no sugar, no caffiene, and as many raw fruits and veggies as I can.
I mean I try to eat well because of years with hypoglycemia.
I didn't have this night crashing issue until this horrible flu hit me. I have had bad days when the day before was bad stress, but this has been consistant.
I am afraid to make my HC too high. Maybe I am being too cautious. Don't want to gain weight when I am in bed so much and don't want to become dependant on too high a dose.
I don't hardly ever stress dose and before I got sick, I was on 17 mgs of HC and doing ok.
My doc says adolsterone is normal, by a blood test and Flucutone, ? meds, are not safe to take. His opinion.
I am not usually dehydrated when I am well and I was tested when I was well and this right now might not be the case.
When I was in the hospital the first day of this, I was so nauseated and nothing stopped it but 100 mg of Coref shot.
So I know this has done something and somehow I think I have had it so long BECAUSE of my adrenals.
God bless you so much for helping me.
Last edited by Administrator; 07-13-2012 at 03:30 PM.
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Like you I go into Adrenal crisis. It comes in two's. That means two things have to be going on to get me to go to the ER. Throwing up and diarrhea for example.
Number 1: You NEED to find an Endocrinologist. Since this is a Specialist you may have to get referred by your family doctor.
Number 2: Get yourself a hug water mug like from a convenience store or Walmart and fill it with water and ice. You need to keep yourself hydrated. If you are not able to get out of bed or it is hard to get out of bed you need to be taken or you need to go to your doctor. If they suggest putting you back in the hospital GO.
If you tell your doctor exactly what is going on there should be no reason why you have to suffer. There is no reason why you have to look up your on Endocrinologist.
I have Addison's Disease since 1998. I found out when I was 4 months pregnant. My blood pressure was extremely low and I couldn't get out of bed or off the couch. I was taken to my Mom's Cardiologist and she put me in the hospital and asked an Endocrinologist to see me.
Don't worry about gaining weight when taking the HC when you are in crisis. You definitely need to find an Endocrinologist. Ask your doctor to be referred to one. If not check into the hospital because the symptoms that I am reading say that you may still be in a crisis. Ask when you are in the hospital to have an Endo come talk to you.
Hope you get feeling better and that you get all the meds you need.
Thank you. I am much better since this post. I am not crashing, not sick, just weak and still in bed much of the day.
My cortisol med is down to 27 mgs but I think I am going to stick there for a while until I am strong again.
I learned alot through this and hope never to go back there.
Many of my friends had this virus and was over it in days but I took a month. It had to be because of my adrenals that it took sooooooooo long.
Is it normal for virus' to take alot longer when you have adrenal issues?
I am rarely sick normally.
This took away half my summer though. So glad I am doing better and back enjoying my farm and my life. hugs to all of you on here.