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  • 16 With Addison's Disease.

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    Old 05-23-2008, 07:11 AM   #1
    Natalie91
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    16 With Addison's Disease.

    hello, im natalie and im 16, i was diagnosed with addisons disease a couple of weeks ago, and im so confused what it acctually is, ive read alot of posts on different websites about different types of addisons disease and it is so confusing! please someone explain it to me! Ive been put on Hydrocorisone and Fludrocortisone which i have to take three times a day. When i speak to people about it they have no idea what it is and its very hard to explain it becuae people dont know what your adrenal glands or anything are. Because im a waitress i find it hard to keep the time so i find it hard to pull myself away to take my tablet because i have alot of responsibility. If anyone understands, please, please reply to this, take care everyone.

     
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    Old 05-23-2008, 07:27 AM   #2
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    Re: 16 With Addison's Disease.

    Addison's disease is adrenal insuffiency. Only emergency personnel and friends need to understand but basically it means that your body cannot regulate sodium and potassium and both are very necessary for life and metabolism. Adrenals are poorly understood even by doctors!

    The reason that you have to take hydrocortisone three times a day is to imitate the normal body. The HC is replacing cortisol. Cortisol rises to its highest point in the morning so usually you take your highest dose when you wake. It then falls to a lower amount in the later afternoon between 2-4pm so that is when most people take their second dose. Cortisol then falls off to near zero so you can sleep around midnight and then the next day the whole cycle starts again.

    I take my HC three times a day - 7am, 12pm, and 4pm. I take a total of 22.5mg. I take florinef only once a day if I take .1, but if I have to take more, I take the additional dose at night to divide the dose. I also take salt tablets to help me feel better. I also add a lot of salt to my diet. That helps.

    You must take your pills. and you must take the on time (pretty close) to keep healthy and alive... I hope people around you will come to understand that. Do you have a bracelet to wear to make people aware that you have an urgent medical condition - like medic-alert?

     
    Old 05-24-2008, 12:32 PM   #3
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    Re: 16 With Addison's Disease.

    Yes i have a bracelet which i have to wear, my manager doesnt like me wearing it for work because my other colleagues want to wear bracelets too just for fashion. They dont understand. My mood swings are ridiculous, are yours the same? One minute im happy the next I get very annoyed over the smallest things. How long have you had Addison's disease? The doctor said i may of had it for over a year, and i lost over a stone and got referred to a dietition because i was on the verge of being anorexic. I know it sounds stupid but can you drink while you are on the tablets? I went out on Tuesday night an i didnt drink very much but the next day i felt very rough. I didnt drink very much but i think it was the fact that i stayed at my friends house and that was the first time i stayed out since i was diagnosed. I would just like to talk to everyone who has addisons disease and tell me what i will go through and things. Please Reply x

     
    Old 05-24-2008, 03:36 PM   #4
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    Re: 16 With Addison's Disease.

    I've been treated for addison's for almost a year now, and i know how you feel too! doctors thought i was anorexic, no one has a clue about the disease, etc.

    The best advice I got was to take my medication consistently and stay hydrated (sounds easy, right?).

    A year ago, if I even had one drink, or didn't sleep for 9 hours, i would feel horrible the next day. Give it some time, because I've heard the first year is the hardest. once you gain the weight back that you lost and your body readjusts you will be back to doing everything you were before.

     
    Old 05-25-2008, 09:00 AM   #5
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    Re: 16 With Addison's Disease.

    You are wearing the bracelet for need, not fashion so your manager is not being reasonable.

    I have adrenal insuffiency really - I had my adrenals removed a couple of years ago to cure Cushing's disease so I have seen both sides.

    You do need to be hydrated and rested. Alcohol is dehyrating - so if you are going to drink, you need to drink more water to compensate. Even so, you cannot be exactly like your chums as vomiting is a life threatening condition for you so you need to be aware that you cannot ever carry things to far. This may be a bummer for someone at 16 but you are not alone.

    The mood swings could be other hormones. As well, cortisol lends itself to a lot of mood swings and so if you are taking a high replacement dose, are erratic in replacement, well, that can contribute to the moods. I was very moody when my cortisol was high.

     
    Old 05-26-2008, 08:26 AM   #6
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    Re: 16 With Addison's Disease.

    If you are vomiting you need to go to the hospital! you might want to tell your friends and family this....if you are ever in the habit of drinking too much especially it can be dangerous!

     
    Old 05-26-2008, 10:05 AM   #7
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    Re: 16 With Addison's Disease.

    Hi Natalie,
    My son is 14 and was diagnosed with Addison's about 4 weeks ago. He still feels very bad and gets nauseous some, but that has improved greatly. He was sick and throwing up before starting the cortef. He lost 18 pounds in a couple of weeks. Now he is still too tired to go to school or do anything else. He sleeps a lot. We may have to home school him next year if he doesn't improve. He takes cortef three time a day and never misses. His BP drops and he get a lot of headaches. He just started a low dose of Florinef which I am hoping will help with the headaches.

     
    Old 05-26-2008, 12:46 PM   #8
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    Re: 16 With Addison's Disease.

    Hey Natalie!

    The Eating Disorder and mood swings - I can totally relate! I couldn't stand the doctor that told my father that I was anorexic. My moods are more of a one minute I'm so happy to be alive, the next I'm wishing that I had passed away when I was close to. Others is I get very angry at some people. I got an e-mail from my mom saying that there was a job opening for me at my cottage. I can't do it because I moved out of the province, I got so angry because I thought she was trying to guilt me into coming back home.

    I hope that your boss understands about the bracelet. It's not just a safety issue but a life issue. If anything happens and you get hurt and are not conscience, then the bracelet will save your life.

    Please keep posting with your concerns, we're here for you!!

     
    Old 05-27-2008, 06:28 PM   #9
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    Re: 16 With Addison's Disease.

    Hey Natalie,
    I was diagnosed at age 20 I'm now 24, but it sounds like you were one of the lucky ones in being diagnosed early. I suffered for years and years in middle school and in high school. Always so skinny and always so sick. I got down to 80 pounds and all the way up to 150 pounds after the being diagnosed (that was scary) but hang in there, I know if I didn't take my prednisone at night, and sometimes I just plain out forgot, but be sooooo careful it is so important to take your meds if you want to feel good. Its that simple. Keep them in your pocket if needed. But lucky you for being diagnosed so young and early. And when you have any kind of bug increase your meds, and drink WATER, I don't mean to be jugdmental, but of all your health problems and putting drinking on top of that, all the risks in putting that into your body, that would make me sick, I can't imagine what that's doing to your young body, try not to do what everyone else does, your the lucky one take advantage over that.

    Last edited by jenni12; 05-31-2008 at 08:12 PM.

     
    Old 06-02-2008, 04:55 AM   #10
    Natalie91
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    Re: 16 With Addison's Disease.

    Its ridiculous im tired all the time, and ive constantly got a cold. Is that normal? wen i go out i dont drink, i always have water because i look after everyone else. I had nine hours sleep last night, and im still very tired, ive got my first hospital appointment soon, what will that be about? Everyone see's this as a disability now, which annoys me so much, it's like people think i cant push myself to my limit because i have this disease. I just get very annoyed with people sometimes because they treat me differently than they used to. Please reply

     
    Old 06-02-2008, 07:30 AM   #11
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    Re: 16 With Addison's Disease.

    You did not say how you are taking your steroids - how much, and when and if you are sleeping well at night.
    The sad fact is that this is a life changing thing. The faster you accept it, the faster you will move on to feeling better.
    I wear a watch that dings and when it does, I take my meds so that I take them at the same time daily. That gives me the best chance of feeling better. You need sleep, and you need a regular schedule. To a limited extent, you can stay out a little later, but you should wake up, take your meds, and fall asleep again -your body needs it meds when it needs it meds. It does not act like a normal body and needs external help or it will get and stay sick just like your colds.

    Your limit is much lower than others now that you have this. Perhaps they should treat you a little differently as your life is a bit more fragile to a point. It is not exactly a disabilty that one sees, but until you get a handle on your meds, your schedule and get where you are not sick all the time, you do need to take it easy. You do not want to risk a crisis.

     
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