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Addison's Disease Message Board
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Old 10-26-2006, 08:00 PM   #1
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Please help!....misdiagnosed Addison's Disease?

Hello everyone, I'm new to this website. I have some questions to ask in regard of Addison's Disease.

I've been ill for well over a year now with an unknown diagnoses. Before all this occured I used to be extremely active. I exercised about 4-6 days a week, a full time college student, and also worked part time. I can't even imagine doing any of these things now considering the condition I'm in. The symptoms I've been having include extreme fatigue (tired all the time), nausea, along with poor appetite, and a weight loss of roughly 35-40 lbs. I weighted about 180 lbs. before I became ill. After my second stay at a hospital for dehydration and malnourishment the doctors checked me thoroughly for everything ranging from certain cancers, HIV, gastroparesis, and even parasites. Thankfully, all of the results were negative. The one thing that was a bit abnormal was my aldosterone levels. I was unaware at the time that they injected something in me to test my hormones. If I remember correctly, the doctor said that my aldosterone levels were "low" and that they didn't "respond the way it should've." From there they wanted to further investigate it, considering the possibility that I had an adrenal disorder (Addison's Disease).

I saw an endocrinologist for the second and third test. For the second test they checked my blood every 30 minutes for I think 2 hours. The third test was a little odd. They had me walking for 4 hours non-stop and checked my blood after I was done. The doctor told me that everything looked normal, and he stated that I didn't have Addison's Disease. He said that nausea and poor appetite aren't "usual indicators" of Addison's. He also said that if I did indeed had Addison's I would've experienced hyperpigmentation of the skin. Even though it's possible for all people of different color to experience this phenomenon, I found that it's not uncommon for people who are darker in nature to not experience this ailment (I'm African American). However, I have noticed at times that my skin does seem darker more than usual. Even though it was considered good news, I was a bit discouraged because I thought I finally knew what was wrong with me. I figured it would be something that I could live and cope with, and move on with my life.

At this point, my doctor (and some family members) thinks that all of this is just in my head. He's even perscribed me anti-depressants. I NEVER was depressed about anything! I'm not crazy, but I'm definitely frustrated. I can admit that I am down now because I feel that nobody is helping me.

I find it pretty odd that my symptoms were pretty consistent with Addison's Disease, along with my abnormal aldosterone levels. Also, I'm a little unaware of this but my folks tell me that I frequently consume salty foods (they noticed this even before Addison's Disease was mentioned). Although it could be anything, I'm still somewhat convinced that I may have Addison's Disease and it hasn't truly developed yet. Or, I was misdiagnosed. After reading so many similar stories on this website, I'm even more convinced. I've read that it's a "slow progressive disease" and that it takes a while for it to be fully detected. Is it possible that I may still have this disease?
Does it sound anything like Addison's? Thanks.

 
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Old 10-27-2006, 02:32 AM   #2
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Re: Please help!....misdiagnosed Addison's Disease?

It does sound like Addison's (it might be adrenal insufficiency instead which doesn't show hyperpigmentation). Your story is very familiar to me because I went 10 years without being diagnosed and through several doctors. However, you have an endo who has apparently checked for adrenal problems and found none; so that is strange, but not conclusive.

The question is: what tests were done? Did you have an insulin induced hypoglycemia test or some other provocative tests? You need to get a list of tests that were done and the results. I would ask your doctor for a 2nd opinion from another endo.

I know all this is so frustrating, but you can't give up, there is something wrong and you will find the answer if you keep going.

Good luck.

Last edited by orion; 10-27-2006 at 02:33 AM.

 
Old 10-27-2006, 08:01 AM   #3
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Re: Please help!....misdiagnosed Addison's Disease?

I honestly don't remember the names of tests that I had done. I just remember the process of the two test. For the second test I just remember them having me walk around the hospital for 4 hours straight non-stop, and then the doctor took some blood samples. Couldn't tell you exactly what it was called or the purpose of the test. I dunno.....I'm contemplating seing another primary doctor because I feel he may just ignore my wishes to have a second opinion done. He's been a bit of a jerk and unsympathetic about everything.

Thanks for the advise and words of encouragement though. I'm glad to know that somebody can at least relate to me and my situation.

 
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