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Addison's Disease Message Board
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Old 08-30-2011, 08:21 AM   #1
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Location: Brampton, On Canada
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katrose HB User
Misdiagnosis?

Hi,

First I would like to apologize, this message will probably be long! Lol
I'm new here and I just wanted to get some opinions on my diagnosis.
I was diagnosed with primary Addison's approximately 10 years ago and to be fair I was very sick at the time. I did have most of the symptoms, I still crave salt, I had low blood pressure, I was underweight and weak, I got dizzy and almost blacked out every time I stood up. They said I had hyper pigmentation but when I look at people who did I don't think so, I'm mixed with Native and although I look pretty white on a regular basis while the rest of my family is dark, I have always gotten a very dark tan in the summer.
Despite all of that I don't believe I have Addison's Disease. At the time of my diagnosis I was in my last year of high school and under an immense amount of stress. My younger sister is mentally ill and my parents were expecting me to take care of her, the house, finish school and somehow save up enough money for college tuition since they decided to spend what they had for me on a cruise. They also weren't very nice to me, in more ways than one. I was beyond stressed out.
I have faithfully taken my medication from day one and I did get better although I also got very overweight. Over the past 3 years I've realized I've felt better but never good. I always feel like crap. Sometimes I would have issue control my anger, feel anxious when I've never felt anxious before.
The dosage of my meds is : Hydrocortisone 10 mg am and noon, 5 mg pm and Florinef 0.1 mg am.
I don't believe I have Addison's. I believe I was very stressed out at the time of my diagnosis which could make my adrenal glands act up. My doctors think I am in denial, but there have been so many situations when another person with Addison's would have to be hospitalized and I never had to be, pneumonia, then shortly after a serious lung infection, plus I work with kids so I always have a cold and I've had a few flus where I can't stop throwing up, can't get out of bed for a week, broken bones...I drink a little Gatorade and I'm good to go. I am the type of person who would rather not put chemicals in my body if I can help it. Especially since I'm planning on having kids soon and I don't want anything to pass to them.
You're going to think I'm crazy when I say this; over the past year I have been tapering my medication down and right now I don't take any of it. My doctor would not agree so I haven't told him, my boyfriend who sees me the most knows and he knows when he should take me to the hospital or when I need meds.
I went for a blood test a little while ago, the routine one I get every few months. At that point I was taking only 5 mg of hydrocortisone a day and my blood test came back normal.
I have been without medication for a few weeks and I feel great, not weak, not dizzy, not turning orange. If my diagnosis is right and from what I've heard from other people with Addison's shouldnt I be feeling awful by now? If not hospitalized.
Because my doctor won't listen I want to see what other people think of this. I know doctors are the "authority" but I also know that the best experts are the people who deal with it every day.

 
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Old 09-05-2011, 06:36 PM   #2
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Join Date: May 2011
Location: Oak Hill, VA, USA
Posts: 23
kiaguppy HB User
Re: Misdiagnosis?

See another endocrinologist and have them do a definitive test. It sounds like your adrenal gland is at least partially functioning.

Quote:
Originally Posted by katrose View Post
Hi,

First I would like to apologize, this message will probably be long! Lol
I'm new here and I just wanted to get some opinions on my diagnosis.
I was diagnosed with primary Addison's approximately 10 years ago and to be fair I was very sick at the time. I did have most of the symptoms, I still crave salt, I had low blood pressure, I was underweight and weak, I got dizzy and almost blacked out every time I stood up. They said I had hyper pigmentation but when I look at people who did I don't think so, I'm mixed with Native and although I look pretty white on a regular basis while the rest of my family is dark, I have always gotten a very dark tan in the summer.
Despite all of that I don't believe I have Addison's Disease. At the time of my diagnosis I was in my last year of high school and under an immense amount of stress. My younger sister is mentally ill and my parents were expecting me to take care of her, the house, finish school and somehow save up enough money for college tuition since they decided to spend what they had for me on a cruise. They also weren't very nice to me, in more ways than one. I was beyond stressed out.
I have faithfully taken my medication from day one and I did get better although I also got very overweight. Over the past 3 years I've realized I've felt better but never good. I always feel like crap. Sometimes I would have issue control my anger, feel anxious when I've never felt anxious before.
The dosage of my meds is : Hydrocortisone 10 mg am and noon, 5 mg pm and Florinef 0.1 mg am.
I don't believe I have Addison's. I believe I was very stressed out at the time of my diagnosis which could make my adrenal glands act up. My doctors think I am in denial, but there have been so many situations when another person with Addison's would have to be hospitalized and I never had to be, pneumonia, then shortly after a serious lung infection, plus I work with kids so I always have a cold and I've had a few flus where I can't stop throwing up, can't get out of bed for a week, broken bones...I drink a little Gatorade and I'm good to go. I am the type of person who would rather not put chemicals in my body if I can help it. Especially since I'm planning on having kids soon and I don't want anything to pass to them.
You're going to think I'm crazy when I say this; over the past year I have been tapering my medication down and right now I don't take any of it. My doctor would not agree so I haven't told him, my boyfriend who sees me the most knows and he knows when he should take me to the hospital or when I need meds.
I went for a blood test a little while ago, the routine one I get every few months. At that point I was taking only 5 mg of hydrocortisone a day and my blood test came back normal.
I have been without medication for a few weeks and I feel great, not weak, not dizzy, not turning orange. If my diagnosis is right and from what I've heard from other people with Addison's shouldnt I be feeling awful by now? If not hospitalized.
Because my doctor won't listen I want to see what other people think of this. I know doctors are the "authority" but I also know that the best experts are the people who deal with it every day.

 
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Old 10-07-2012, 04:38 AM   #3
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Join Date: Oct 2012
Location: Sutton In Ashfield uk
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dizzydawn HB User
Re: Misdiagnosis?

Hi Just wondering what happened in your situation? My daughter seems very similar xx

 
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Old 10-08-2012, 01:49 PM   #4
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(female)
 
Join Date: May 2011
Location: Oak Hill, VA, USA
Posts: 23
kiaguppy HB User
Re: Misdiagnosis?

Did you ever have the definititive test for Addison's or were you started on treatment just based on symptoms? I was not diagnosed in the hospital as many are but that was because I suspected I had and asked to get tested on an outpatient basis (not the way it is usually done). If you didn't have a definitive test, then I would say find an endocrinologist who will do it from their office (a lab will need to be close by). If I only took 5 mg/day it would not be enough. If I forgot my meds, by 10-11 am I can already feel my blood pressure going down.

If you do have Addison's, perhaps you still have some adrenal reserve.

 
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