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    Old 03-25-2010, 07:31 AM   #1
    smz2376
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    Post Normal ACTH Test and Frustrated....

    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.

     
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    Old 03-25-2010, 08:03 AM   #2
    smz2376
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    Re: Normal ACTH Test and Frustrated....

    I forgot to mention that I have also lost 31 lbs in the last four months and I have no idea why. My appetite has decreased significantly. I still get hungry, but am only able to eat about half of what I could before.

    I had the H1N1 virus in Oct., some recurrent infections since then, and a car accident Dec. 22nd where I hurt my neck.

    When I read about Addison's Disease and compared it to my symptoms and all of the stress I've had recently, I swore it would have been the answer.

     
    Old 04-02-2010, 06:34 PM   #3
    SleepyPeepy
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    Re: Normal ACTH Test and Frustrated....

    Hi

    Please do not give up.

    I am around the same age as you, female and my symptoms are identical, right down to the weight loss over the past few months.

    I was diagnosed with MS six years ago, then I demanded a second opinion as my tests were all normal and symptoms didn't fit MS. Everyone disagreed about what was wrong with me then surprise surprise, like you, they tried to imply that it was psychological. When I ask for pain meds, my notes imply that I am a drug addict, despite the fact that I have had a professional career for over a decade, along with a professional degree and no history of drug addiction or psychological issues. There is NO basis for these assertions.

    Anyway, I gave up for a few years and suffered terribly until recently I could take no more and was at rock bottom with severe fatigue, pain, stiffness, sweating, shortness of breath, overheating and pain in my back and legs. So, I got myself a new GP, went along and told my story and asked if he would take me as a patient. He was fantastic and immediately arranged a full blood panel and said if needed he would refer me to an endocrinologist.

    I had my bloods done on Monday this week and the new GP called me Wednesday and said I had low cortisol and he was arranging an immediate Short Synacthen test.

    In short, I feel so sorry for you and know exactly what you are going through. Do not allow them to write you off as "mentally ill" - they have no basis for this. A failure on their part to diagnose or even try to diagnose, potentially rare disorders, does not constitute random unfounded assertions of mental illness. In fact, their failure to look at other avenues is remiss, if not negligent.

    Normal ACTH test doesn't mean you don't have adrenal failure, there are other tests and other conditions that have to be considered. By the way, I have also sat there in tears and insisted look I know something is wrong with me, I am too tired to go to work, or to do anything and I am not depressed, if anything I'm desperate to do more with my life but I can't. When you cry in front of them, they resort to terms like "conversion" and make out that you are ill because you are depressed and it is manifesting as physical symptoms. All nonsense of course and provides a nice easy get out for the baffled/incompetent/can't be arsed/won't spend money range of clinicians out there. Tell them they are showing clear signs of CBA disorder. CAN'T BE ARSED!

    I think you need to do what I did, start again, find a new GP and start from the start. I could help you with this if you want to PM me, or even if you want to chat for a bit of support from someone who totally understands.

     
    Old 04-05-2010, 06:33 AM   #4
    Songcanary
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    Re: Normal ACTH Test and Frustrated....

    Hi there,

    I totally agree with Sleepy. If at all possible, do get another opinion. I did and it was worth all the struggle to find one. My former GP thinks I'm nuts and I have all your symptoms and more, including the profound weight loss and anorexia. Those were the first symptoms that sent me to him. He let me suffer for nearly three years, just kept sending me to gastro. So he says I need to eat more. Well, duh. If I had an appetite, I would surely do that. Long story short, are you menopause-age at all? I never made the connection because I never had a hot flash etc., but apparently my hormones in general are just messed up and are creating all kinds of havoc. Not one doctor ever mentioned the word hormone. Most importantly, I found out I have elevated cortisol with a pm spike. Cortisol is catabolic to muscle and that explains the weight loss. It is still considered adrenal fatigue because cortisol can elevate before it finally tanks. You will still have the crappy symptoms. I am on Seriphos x one month and BHRT x three months and I am just now starting to feel a little better. Don't give up girl, there is hope. At Christmastime I was so ill I was mentally planning my own funeral. I got the old 'depression' runaround too. I am not a depressed person. When I feel physically well, I am the happiest person in the world. You will get there, too. Keep searching and don't let anyone tell you otherwise. Very best wishes!

     
    Old 04-17-2010, 01:57 PM   #5
    denaandannalise
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    Re: Normal ACTH Test and Frustrated....

    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:
    Originally Posted by smz2376 View Post
    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.

     
    Old 04-23-2010, 04:40 PM   #6
    jessmariebfly
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    Re: Normal ACTH Test and Frustrated....

    OMG I have most of those symptoms too.You can read my long post of all my symptoms.I pass out and have seizers too but epilepsy tests and mri and cat scans and blood work were normal except my ANA test was high and my sodium level was a little low. Heart doc gave me florinef and then I started taking a sodium tablet too,but made no difference. Saw endo tuesday cause I was so sure I had addison's but he said he didn't think it was cause I don't lose weight and I don't have the darkening of the skin.But I have all the other symptoms! Going for stim test tuesday! was suppose to have tilt table test but was afraid to pass out cause last time was horrible! Seizures apparently arn't real seizures cause I don't wet myself or bite my tongue and usually when I wake up I am perfectly fine except the last time

     
    Old 04-24-2010, 07:01 AM   #7
    smz2376
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    Re: Normal ACTH Test and Frustrated....

    Thank you to everyone for your kind remarks and wonderful support. This was the first time I'd ever posted a message on one of these forums. I'm a relatively private person, but as I read countless posts on this site I realized that there are other people out there just like me.

    I have found that in my struggle to get healthy that doctors are not going to spend the time to find an answer for me because it will require more work than they are getting paid for. Why would they want to take the extra time to figure out what is wrong with me when they could be charging five other patients with easy illnesses?

    That is the beauty of this message board. I think that it is ordinary people that are going to find the answers, not people $150,000 student loans.

    I apologize that it has taken me so long to respond. I really have not been doing so well and all of my energy goes to keeping my head afloat and my children with me.

    I'm having some new symptoms, three weeks ago I got a mild cold (sore throat and tickle in my chest). Ever since then I've had increasing muscle weakness. I still have strength, just no endurance. Standing for 60 seconds makes my legs feel like I've run 10 miles. I can pick up my 29lb. daughter, but I can only hold her for a minute and then my arm starts shaking and cramping and after I put her down I feel like I've just had a strenuous workout. And the most bizarre is when I use the trigger on a bottle of cleanser even my fingers feel fatigued. (I keep taking breaks from typing.)

    This is insane. I'm only 34-years-old and I'm terrified. I feel like I'm going down hill fast and when I saw my doctor the other day she said, "I don't know what to tell you."

    She said she's going to send me for the "next level of testing" which might include a muscle biopsy, which doesn't thrill me, but I thought I've been asking for whatever testing necessary that would give me an answer! I have an appointment with an Urologist in two weeks (I have had cloudy urine with white blood cells and protein without an infection for at least 3 mos., and particles in my urine for the past 2 mos., along with kidney pain) and an appointment with a Neuromuscular Specialist in 2 mos. The Neuro doc will look for a Mitochondrial Disease.

    Again, I apologize for the lengthy post. I'll try to write more frequently so it's not as long in the future.

    Best of luck to all of you. I feel all of your pain. Please keep me informed as to how you are all doing. I am sincerely interested.

    ~Stacie

     
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