Addison's Disease Support Group

Addison's disease (also known as chronic adrenal insufficiency, or hypocortisolism) is a rare endocrine disorder. It is estimated that it affects about 1 to 2 in 100,000 people. It occurs when the adrenal glands, seated above the kidneys, fail to produce enough of the hormone cortisol and, sometimes, the hormone aldosterone

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bny806 07/07/2013

Hello all! I am in limbo land currently (been sick for a little over 2 years).. I first had a strange event during my epidural to have my child (blood pressure tanked - couldn't breathe and they almost intubated me)..

Anyhow fast forward 2 years - I have had weight loss, nausea, my heart races all the time, i have a lot of palpitations, muscle weakness and muscle atrophy (diffuse).. I am always lightheaded when I stand up.. and most recently I have noticed the hyperpigmentation - looks like I have lip liner on, and I don't.. I look like I have the best tan i've had in a long time, but am also splotchy...

I feel like my whole body is trembling at times.. i almost have a tremor too when symptoms are bad - when I have adrenaline (when I'm mad or excited/happy or scared).. my symptoms go crazy - my muscles all get weak, i just flat out feel sick, and my tremors get worse.... as do the heart palpitations.. They tested my cortisol level one time and it was within range.. Thanks for any advice.. ..

22Lynn 07/07/2013

I would insist on getting tested again. It took me nine months to convince my primary doctor that I thought I had adrenal problems because of fatigue and the hyperpygmentation. I had full blown Addison's it turned out. Change doctors if you have to. This disease is a very serious disease to deal with everyday. You really need to know, and the sooner the better. Everyone gets it differently, mine was from a long period of stress and undiagnosed celiac disease. Yours could be from your pregnancy. Read some of the posts to understand more about how to live better with this disease. Good luck getting tested. I hope you feel better soon.

bny806 07/08/2013

Thanks so much!! I'll have my dr check some levels... does any of that sound familar to you?
I have another strange symptom- at times I will feel just awful,, just incredibly sick.. and then it seems like I have to urinate a bunch (like 5-6 or more times in an hour_.... and then a while after that I start feeling better again.. though still not great! I have family members with celiac.. i had major GI symptoms when this all started, so they think i have celiac too (i was already eating gluten free for a few weeks before testing, due to my family members with it, and I was desparate to feel better).. the tests were negative.

bny806 07/08/2013

oh. i meant to say..... i usually have the most intense, almost painful hunger when my symptoms are at their worst.. i will eat a ton... and I wake up absolutely starving... .. it's miserable being that hungry so often!

Silkakc 07/08/2013

If your blood pressure is low, ask for an Aldosterone blood test. Any primary Dr can prescribe Florinef for low blood pressure so at least you won't be keeling over when you stand up. Florinef helps you retain sodium and excrete potassium.

22Lynn 07/08/2013

Your celiac test would come out negative if you were gluten free at the time of the test. So you need to be retested for celiac while eating gluten. Or you can stay gluten free for 90 days then reintroduce gluten and see if it causes you a problem. But 90 days is a minimum for this to work. I have both celiac and IBS. My endo says 25% of his Addison's patients have celiac disease. Celiac is an inherited disease. Being undiagnosed for 54 years of celiac caused my Addison's. Good luck with all your tests. Message me if you have any questions.

bny806 07/08/2013

Thanks so much yall.. yes... my BP is usually upper 90's or very low 100's when they check it.. I ALWAYS am lightheaded upon standing.. they did the tilt table test on m e a few years back, and my heart rate sky rocketed (it went as high as 160's)... and bp dropped, but I didn't pass out... technically I didn't have POTS they said..
I'll have them check the aldosterone as well - do yall have any of these symptoms like me?

Lynn- I have been strictly gluten free for over 2 years.. I was SOOO sick I got hospitalized.. with my family history, i went gluten free right then.. I had been losing weight and having awful GI symptoms, I would eat more and more cookies and gluten containing foods trying to gain weight, and just had bad malabsorption. I have tested it out a few times in the past 2 years and ALWAYS get sick.. I'll get my GI symptoms, feel bad and feel more hunger..and I know i've ingested something... even toothpaste with gluten turns out really messes with me! So, I avoid it all now

LezleysHearttoyou 08/05/2013

Test again, I believe you have Addison "s bang on with my symptoms.. Took me two years too. In fact only because we pairs private, due to desperation...we found out, 7 stone 3 went down too passing out to whilst standing, cough what a silly cough, always sick to . Check it again nagg nagg nagg

deleted_user 08/05/2013

I have the same problem with feeling bad and urinating a bunch day and night. I also have dry mouth and am always thirsty. Do you have this too .....Please get your levels tested.have them check your blood sugar also. In addisons along with low cortisol and aldosterone levels your sugar can get low. This disease is serious and I agree with 22lyn comment if your doctor won,t test you find one that will. My problems are aggravated by ms please keep me informed

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