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Addison's Disease Message Board

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    Old 09-06-2014, 05:02 AM   #1
    cockybendy
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    New to this

    Hi everyone,

    Today is a better day.
    Ok just had testing done for adrenal issues, first test was below, low normal.
    Had am and pm testing done yesterday.
    My thing is some days are just horrific and others days I can sit and read!!! Not too much of anything else though.
    I don't understand the dynamics but I do know I am no where near my usual self.
    I seem to be dizzy or fuzzy most of the time, some times horrifically so, then if I rest up I am kinda ok in a few days.
    Profound fatigue, think I can go do simple things but then two minutes in, I have to go either sit or lay down. I sleep several times a day. My muscles are so weak.
    No appetite, lost weight not much but I have lost.
    This all started with a weird back pain several months ago, had antibiotics for an infection which ended up not being there. Odd!
    Ringing in my ears, etc etc I could go on and on if I could just remember everything.
    I used to cycle, I can't. I a sick for days after if I even try to exercise.
    At first I gained weight up to 5kg over my normal weight now that has dropped 3 kg without trying.
    I have blurry vision and a wee brown patch on my face!! More freckles on my forehead which is all weird because I wear 100 UVA/UVB sunblock, very fair and light sensitive as well as I have now night blindness.

    What on earth does my adrenals have to do with all that??

    Thank you!! I gotta stop now, I'm knackered already.

     
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    Old 09-07-2014, 02:15 AM   #2
    cockybendy
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    Re: New to this

    Don't worry about the user name it only means darling in my neck of the woods when I was little. Now that I read it, it looks rude!

     
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    Old 09-07-2014, 07:03 AM   #3
    BellaMila
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    Re: New to this

    Hello,

    Pretty much your symptoms mean, your adrenal glands are not producing enough cortisone, you need it for your body to function. I assume your AM and PM testing was to see if you had Addison's disease?

     
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    Old 09-07-2014, 07:36 AM   #4
    cockybendy
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    Re: New to this

    Hello there BellaMila, I think so. The dr just said there is something wrong with your cortisol level it is lower than low normal and there is something up with your ACTH. So he asked me back for am/pm testing.
    I hope when I go tomorrow he will start me on something. I am not sure if I can take anything for my spasm in my shoulder muscle. I am so done in.
    My last blood work showed high normal (right on the cusp) potassium and low normal (right on the cusp) sodium so I think that is causing the spasms and the tremors I experience periodically and always when I wake up from sleep, any sleep. It feels odd and very uncomfortable. Some times I can hardly hold my head up without my should and neck spasming. Plus a multitude of other things!
    I underwent a repair on my heart two years ago and ever since I have not been right and had huge stress issues with ill relatives.
    Gradually grinding to a halt.
    Does this sound familiar? I just need to understand.
    Thank you so much for taking time to resound BellaMila.
    I am grateful

     
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    Old 09-07-2014, 04:51 PM   #5
    BellaMila
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    Re: New to this

    Do u crave salt? I used to have spasms, just thought It was somewhat normal, but since being on steroids, I haven't had any. Did you have any of these issues before your heart surger? Usually Addisons' disease is brought on by stress or trauma, I got Addisons' disease from being pregnant (by the time I gave gave birth I was 43 kilos, and literally knocking on deaths door) I am the only known case to get Aadisons' from being pregnant. Ask your GP if he/she is testing for Addisons' it is one of the hardest diseases to diagnose, and there are a few diseases with similar symptoms. EG: Celiacs Disease. It took Drs over 12 months to diagnose me, I was about 40 minutes from my body putting itself into a coma, the ambulance guys told me..

    If you need any more help, just ask, I'm no Dr but I do know a lot about Addisons'

     
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    Old 09-07-2014, 11:20 PM   #6
    cockybendy
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    Re: New to this

    Hello BellaMila,

    Yeah I crave protein, like salted ham, sausage and salted peanuts and snacks. Although these days I feel nauseated after I eat. I have gluten, wheat, barley, rye, oats and spelt intolerances now.
    I thought my spasms were normal too, from trying to exercise. I also have sore feet and heels, that's new.

    I feel like I'm on a roller coaster, one day (not great) feeling ok, to it going worse thru out the day, to feeling awful as soon as I get up.

    My legs ache now.

    Did you find it hard to read?? I am having difficulty reading, my brain can't seem to concentrate on it.
    I am grateful for you allowing me to pick your brains. Thank you.
    Wishing you a beautiful day!
    Thank you!

     
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    Old 09-08-2014, 04:28 AM   #7
    cockybendy
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    Re: New to this

    Been to doc. Morning level was 2 : evening level was 7.
    Below low normal in the am, low normal in the pm.
    So I have to wait until I crash I guess. He says there's enough.

    He has given me anabolic steroids injection and go back and see him in two weeks.
    Dunno how that's supposed to help but he says it will.

    I guess it's back to the roller coaster, I will crash my cortisol will be below normal, I will do this am/pm test again... And so on.

    Do you think a saliva test would be good?

    Thank you.

     
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    Old 09-09-2014, 07:59 PM   #8
    BellaMila
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    Re: New to this

    I have worn glasses since I was 8 years old, but yes, since taking the steroids they seem to have gotten a little worse.. The aching/cramping is very common, best thing to have is pickle juice (yuck I know) or about a shot glass of powerade I was told. Did u ask ur dr about Addison's disease?
    I never did a saliva test, but I guess it couldn't hurt..

     
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    Old 09-10-2014, 12:29 AM   #9
    cockybendy
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    Re: New to this

    I am heading back to a dr I saw in another country cuz I emailed him.
    He wants to do a stim test so I am heading back to see him.

    I'm glad he is taking me seriously.
    I guess he is looking at Addidons.

    Today is a thirsty day again... I'm tired already I've only been up 3 hrs!
    Anyway thank you so much!!!!! I so appreciate your thoughts input a and advice!

    I LOVE pickle juice right now!! :-) dunno why but I do!!
    Any pickles I love right now!
    I have gone to the dark side! :-)

     
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