Hi Twoboyz,

My symptoms were: craving salt, orange/brown strip of skin on my upper chest, fatigue.
My am cortisol levels are almost always 1 or under. They have been up to 3 a few times.
I was Dx'd 18 years ago by a blood test.
I take 30 mg of hydrocortisone daily.
I have never felt o.k. Again since having Addison's. But I have gotten other autoimmune diseases since being Dx'd.
Almost everyone seems to get it differently. I got it from a 10 year period of extreme stress and having and undiagnosed disease, I burned out my adrenals, completely. Others have gotten it from a virus, being really sick, having surgery, having a baby, so many ways this disease can start. Sometimes the doctors can't tell you what started it.

Hope this helps.

My symptoms were/are severe anxiety, weight loss , lack of appetite, hair loss, always cold, fatigue, salt cravings, low blood sugar, low blood pressure, irritability, diaherra, depression, and nausea with severe GERD. I also have Gastroparesis and all my docotor were attributing my symtoms to Gastroparesis.
My am Cortisol level was 0.6
I was diagnosed through the ACTH test , CT scan and Brain MRI (looking for a tumor) I have secondary adreneal insufficiency.
My treatment is 10 mg of Hydrocortisone at 6 am and 5 mg at 12 am.
My treatment is NOT working for me. I am very fatigued and have gotten into arguments with my doctor, telling her I'm on a baby dose. I am going for a second opinion but I feel doctors know very little about Addison's . I'm finding some don't even know what it is.
I have not a clue what causes this awful disease. What I do know is when I had to triple my dosage level for three days for a recent Root Canal I felt a heck of a lot better than I feel at my replacement dosage level. Be well.

Hi Twoboyz,

I've been diagnosed for just over 8 years...

Symptoms prior to diagnosis were salt cravings, weight loss, nausea, black outs, dizzy spins, light headedness, constipation, extreme fatigue.

I was diagnosed after being rushed to hospital in a lifeless state - my blood pressure measured at 43/32. My GP was aware of my previous symptoms, but never considered Addisons Disease as a diagnosis. Originally treated in hospital with saline drip to increase BP and improve dehydration. Hospital thought I had an eating disorder. Tanned colour gave away the clue (I am tanned all over). They tried cortisone by IV in hospital and noticed immediate improvement. It took a few days before I could walk/talk again due to severe weakness.

I've been diagnosed with poly endochrine disorder and am on Thyroxine, Cortisone Acetate and Fludrocortisone. Treatment is working very well, however I have suffered 3 addisonian crises since original diagnosis.

I consider myself a lucky lady and do not let this condition get me down.

My condition is auto-immune caused.

Hope this helps.

Tammio
Your dosage level is low and may be contributing to your symptoms. Many of your symtoms could be attributed to that.

Thank you for your replies, this is very helpful. Once you started the medication, were you then able to gain weight and did your hair grow back? Or does the medication just prevent further hair and weight loss? Did medication help your other symptoms as well? I am frustrated, I just don't know what to do. I had 2 ACTH stim tests done a few years ago and they were normal. My AM cortisol is 8.9. My doctor says that is borderline and wants me to get another stim test. I just don't know what to do. A cortisol of 8.9 is normal and I'm afraid to do another test. Has anyone heard of someone having Addison's with such a high cortisol? My symptoms have been going on for years. I eat so many calories a day and cannot gain a pound and I'm losing hair like crazy - on my scalp and on my body. I have a bunch of other symptoms, too, but these 2 stick out the most. I have been tested for everything under the sun. I'm sorry - I feel like I'm rambling but I'm just so frustrated and confused :( I really appreciate your feedback. All the best.

Well, 8.9 is definitely on the low scale. I would do the stim test again. I do know most people with Addison's lose a lot of weight until on meds.

The hair loss could be thyroid. If your in the very lower part of normal on your thyroid test a lot of doctors don't treat you. I was Dx'd with both Addison's and hypothyroidism at the same time. A lot of the symptoms overlap. It took me quite awhile to figure out if I needed more steroids that day or it was just a bad thyroid day.

If you can go to stopthethyroidmadness and read the symptoms.

Has your doctor done an overall blood test for all autoimmune diseases? That might help. I did that last summer so I could start a new treatment for my headaches.

Good luck in your search for better health.

Thank you for your reply. I have had numerous autoimmune tests, all came back normal. I think I've had my thyroid tested most of all! Most doctors immediately question my thyroid when I explain my symptoms. Not only are my thyroid labs normal, but they are dead center in the range. They're not even close to borderline on either end. I always hope my thyroid labs will be off just so I can have an answer. I just want to feel and be normal again, I forget what it's like :(

I know, I would love to feel normal again. Wouldn't that be wonderful? Ive had one day in 18 years where I felt like myself for a whole day, thanks to a lot of steroids. I had actually forgotten what that was like.

My initial cortisol level was around an 8.9 , when they did the stim test it was an 0.4. Then it never rose to 20 with stimulation.
Demand or ask politely for a stim test. Most Addison symtom' s are well established before the person is diagnosed.
I was just like you losing a lot of weight like carzy and my hair was falling out like carzy. It was everywhere. I would say three times the amount normally .
I went to a new endo and she thinks I had some symptoms of Addison's for 7 years before I got diagnosed . I strongly suggest you : Go for another opinion .

I was diagnosed in 2011 after feeling just awful for months. The endocrinologist took one look at my tan and called it. I have a lot of information about my symptoms, diagnosis, and post-diagnosis issues in a blog I'm writing while we're spending 9 months traveling around the world. I'm documenting what is happening on our travels, thinking it might help someone else. To my surprise, I did experience an Addisonian crisis, but recovered quickly with excellent care in New Zealand.

Please take a look at the blog for more information. Feel free to pass it along to others.

https://travelswithaddison.wordpress.com/