I have a question... I see an endo on the 25th and plan to get a true test for Addison's but I was just wondering about something. My regular doctor tested my cortisol levels and told me they were normal - does this matter? I know the real test involves an injection so my question is, on regular blood workups, is there anything that should stick out for somebody who has Addison's or are those typically normal?

So far my bloods been pretty normal aside from some low blood counts from time to time and low glucose at times. Everything else is always normal and always has my doctors telling me I'm perfectly fine (when I'm far from it!)

Hi i'm not going to be much help as I am in pritty much the same position as you. However I wanted to state that I'm also having trouble with my doc telling me that everything is normal when it clearly isnt!

I have had symptoms getting worse over the past 4 years. I have tiredness that goes up and down throughout the day, cant gain weight dangerously low BMI, cold, low blood sugars, anxiety, hair comes out easily and is very thin, weaker, dizzynes, could go on... Anyway all my blood work has come back normal too including cortisol, U+E's, thyroid, full blood count, and fasting glucose(even though it had gone down to 1.2mmol an hour before the blood was taken- yet its still normal!!)

It has been suggested to me through here that just a single cortisol test is not enough to base a diagnosis on and an ACTH stim test is needed to really see what is going on. I've finally been referred to an endocrinologist after virtually being told that its all down to anxiety/depression (no meds worked at all just delayed diagnosis!) Anyway hope you get seen to soon, keep us posted!

My blood tests were always on the low normal size and it took 3 provocative tests to finally confirm I am adrenal insufficient. A simple blood tests for cortisol is virtually useless for diagnostics.

Me too.

My cortisol level was on the low side of "normal" with each test, but the stim test was the diagnosing factor. Everything looked 'just fine' in the way of blood tests,etc. I hope your endocrinologist appointment goes well!

MaryAnn

Orion and Making777, What was your weight like when you finally got diagnosed? Is weight loss one of the first symptoms to show or does it follow the progressive fatigue?

Thanks!

By the time I got diagnosed, I had lost 30 pounds and was thin as a rail. Once I got on Cortef, I could eat again, and since then I've gained all the weight back -- plus 20 pounds more, which I don't need. I actually didn't notice the fatigue as much as the nausea, vomiting, and weight loss.

I lost alot of weight 2 years ago when I first got sick. I was at my thinnest but after I got diagnosed with Postural Orthostatic Tachycardia they put me on Florinef and I gained it all back and more. However I'm still constantly fatigued, etc. So that's why I'm wondering if there's more to it. I really think if it hadn't been for the Florinef though, I would've kept losing but I think it confuses doctors because my symptoms are being masked.

I lost alot of weight 2 years ago when I first got sick. I was at my thinnest but after I got diagnosed with Postural Orthostatic Tachycardia they put me on Florinef and I gained it all back and more. However I'm still constantly fatigued, etc. So that's why I'm wondering if there's more to it. I really think if it hadn't been for the Florinef though, I would've kept losing but I think it confuses doctors because my symptoms are being masked.

NOLA gal,

I was 135lbs when diagnosed. My weight was only slowly decreasing, but I have been hypoglycemic for as long as I can remember and have always kept myself on a high protein diet, which is perfect for Addison's. I think I have been what my endocrinologist calls a 'smoldering' case, as I can now see many signs and symptoms that I have had of this since my teens, but it hasn't been until now that I have needed meds.

The biggest things that clued me into me having Addison's was a problem with increased frequency and severity of headaches accompanied by an incredible amount of nausea, but mostly my sudden drop in blood sugar during stressful situations. I have always had very low BP, even when 9 months pregnant, and we always just thought I had a very healthy cardiovascular system! :) The fatigue has been there for years for me, but since I have been dealing with it since my teen years, I got used to it and just told myself it was all in my head, or I was just wanting to be lazy. I also have 4 kids between the ages of 9 and 3, and I worked night shift as a nurse for 11 years. Fatigue is a given under those circumstances! I also have always had a love-affair with salty foods, but never really put everything together until 2006.

Now that I am on meds, I regretfully have gained 15 pounds, and that is difficult for me. I am actually thinking about getting back to exercising, if my body will let me!

I hope that helps!
MaryAnn

Thanks everyone for the replies. It does help. I go back to the doctor in June and I think at that point he will probably do a stim test. Fatigue is my BIGGEST issue. I doubt I have Addisons b/c of the weight issue but I did feel so much better when I was on a course of 0.5 dex for increased androgens.

Unfortunatley, some of my blood work came back contradicting earlier tests so that's why I have to go off the dex for 8 weeks and wait to be retested. I think it will turn out to be some kind of adrenal hyperplasia (can't make enough cortisol b/c of an enzyme deficiency) but I'll have to wait and see.

Thanks again!

Sharon