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Addison's Disease Message Board


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Has anyone who has been diagnosed with Addison's ever had a normal ACTH test?

I'm a healthy 34-yr-old, according to my doctors, only I don't feel that way. I've been sick for more years than I can count. They doctors do their usual blood work, CBC, anemia, Lyme Disease. Everything always comes back normal. I am not normal, though.

I have always had what I call "flare-ups" where I have debilitating exhaustion and lethargy, profound weakness, frequent urination (2-3x at night), shortness of breath, occasional vomitting (nobody else in my house gets sick), feeling of low blood sugar, especially after lunchtime. I wake up tired and unrefreshed most days, perk up a bit mid morning then CRASH by lunch. In the afternoon is when I feel exhausted down to my core. When I feel my worst I feel like my insides are literally shutting down. And at night I get achy, low-grade fevers, cramps down my legs and aching mid-back (where my kidneys are).

Two weeks ago I felt so horrible as I lay watching my two small children play I was afraid I wasn't going to wake the next morning. And somehow, the next morning, it all slowly started to lift...the achiness went away, I got more energy and by dinnertime was making a pot roast!

I don't understand what's wrong with me!

My GP is baffled. She wants to give up and call it Chronic Fatigue. GYN called it a "weird hormone thing" and wanted to send me to a herbal pharmacist. I have low blood pressure, so I saw a Cardiologist who did a Tilt Table Test (normal). He sent me to a Neuro. Turns out I have a Seizure Disorder (I had other symptoms I didn't mention, but those have been resolved with meds), Rheum tested me for inflam diseases (neg ANA), no Sjogrens or Celiacs, Hematologist reluctantly did CT Scan (normal). When he saw my list of doctors and my normal tests and my eyes well up when he told me I was "healthy" he referred me to a Psychologist!

I just talked my Endo into doing the ACTH Stim to test for Addison's because I do have a microadenoma yesterday. She called this AM and it was NORMAL.

I'm devastated. This is not in my head. I'm sick and I'm not getting any answers. I want my life back and I want to be a better mother to my children. I need to be healthy to do that.

I'm so sorry for the long post...it's been a long road for me.
Hi there...I know how frustrating it is to not get answers. I have been suffering too. With high DHEA, very low potassium, high renin and aldosterone. One thing that I did to for myself that has shed some light on what is going on with me hormonal wise that isn't showing up in blood is the salive test. It measures all of your hormones. You should do it, it might give doctors an idea of what is happening with you. Also, in my test it revealed that i have a gluten sensitivity. So, that could be your problem as well. Have they checked your thyroid, maybe you should keep an eye on your blood sugar throughout the day...that can make you feel weird. Have you had your adrenals checked...I think the ACTH just measures cortisol doesn't it? I hope you find your answers. Hang in there.



[QUOTE=smz2376;4211636]Has anyone who has been diagnosed with Addison's ever had a normal ACTH test?

I'm a healthy 34-yr-old, according to my doctors, only I don't feel that way. I've been sick for more years than I can count. They doctors do their usual blood work, CBC, anemia, Lyme Disease. Everything always comes back normal. I am not normal, though.

I have always had what I call "flare-ups" where I have debilitating exhaustion and lethargy, profound weakness, frequent urination (2-3x at night), shortness of breath, occasional vomitting (nobody else in my house gets sick), feeling of low blood sugar, especially after lunchtime. I wake up tired and unrefreshed most days, perk up a bit mid morning then CRASH by lunch. In the afternoon is when I feel exhausted down to my core. When I feel my worst I feel like my insides are literally shutting down. And at night I get achy, low-grade fevers, cramps down my legs and aching mid-back (where my kidneys are).

Two weeks ago I felt so horrible as I lay watching my two small children play I was afraid I wasn't going to wake the next morning. And somehow, the next morning, it all slowly started to lift...the achiness went away, I got more energy and by dinnertime was making a pot roast!

I don't understand what's wrong with me!

My GP is baffled. She wants to give up and call it Chronic Fatigue. GYN called it a "weird hormone thing" and wanted to send me to a herbal pharmacist. I have low blood pressure, so I saw a Cardiologist who did a Tilt Table Test (normal). He sent me to a Neuro. Turns out I have a Seizure Disorder (I had other symptoms I didn't mention, but those have been resolved with meds), Rheum tested me for inflam diseases (neg ANA), no Sjogrens or Celiacs, Hematologist reluctantly did CT Scan (normal). When he saw my list of doctors and my normal tests and my eyes well up when he told me I was "healthy" he referred me to a Psychologist!

I just talked my Endo into doing the ACTH Stim to test for Addison's because I do have a microadenoma yesterday. She called this AM and it was NORMAL.

I'm devastated. This is not in my head. I'm sick and I'm not getting any answers. I want my life back and I want to be a better mother to my children. I need to be healthy to do that.

I'm so sorry for the long post...it's been a long road for me.[/QUOTE]





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