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    Old 07-25-2008, 06:59 PM   #1
    Essieness
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    Smile Hi, I'm new to this board and new to Addison's

    Hi everyone. I was diagnosed with Addison's only a few days ago. Things got crazy... I went into adrenal crisis before I was diagnosed. Guess that's the problem with being too stubborn to go to the doctor! I have been prescribed Prednisone and Fludrocortisone. Also Protonix for stomach acid.

    Here's my story in a nutshell. Over a year ago I was a healthy (little chubby for my height, 5'5") 140lbs. Happy and healthy. By July '08 I weighed in at a whopping 102lbs. My dad died in June '07 and I started getting depressed, lethargic... In December '07 I went to the doctor where I was diagnosed with depression and began Cymbalta. That's when the weight started falling off. It helped my mood, but that's about it. I was losing 5-10 lbs per month. My appetite decreased and I was very moody. Fast forward to May '08, my husband and I split and I get my own apartment. Still no appetite, and continually losing weight. June 13 '07, I lose my job. That's when it all went extremely downhill. Within a month I became unable to work, eat, sleep, even walk around my apartment (which is VERY small). I was out of breath, exhausted, dizzy, vomiting all the time, cold sweats... every symptom you could think of. I finally decided to go to the doctor, but by that time I couldn't even drive so my mother took me. My BP was 50/69 (I think...something like that), and I was in full blown adrenal crisis. I was rushed to the hospital, pumped full of saline. At this point they still thought it was ulcers due to stress or a stomach infection. After an endoscopy ruling those two out, my doctor suspected adrenal insufficiency. That's when they started the testing. I went into the hospital on Monday, and by Tuesday evening, Addison's was considered the prime suspect. Today is Friday. I'm on my meds and feeling well, except for some indigestion. But that's probably due to me not eating for a few months!

    So... I'm here to find out what to expect with this disease. How others are living with it, since it is so rare.

    Essie

    Last edited by Essieness; 07-25-2008 at 07:01 PM.

     
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    Old 07-26-2008, 05:19 AM   #2
    rumpled
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    Re: Hi, I'm new to this board and new to Addison's

    Prednisone... hmm well soon you will gain the weight back and probably more. Not the best choice IMHO for replacement as it will interfere with sleep and not give you a normal rhythm for the body but you only have to take it once a day.

    Prednisone lasts 18-36 hours. A normal body has a rise in cortisol (which the pred is replacing) that is highest at roughly 8am, falls to roughly half in late afternoon and then falls to close to zero around midnight. Usually doctors give hydrocortisone or cortef (brand) so that you can mimic the normal body. Pred will take a couple of hours to kick in as well. If you start to have issues, change steroids.

    You may also need florinef and also look to increase the salt in your diet. Part of this disease is that you cannot hold on to salt and need it so if you crave it, take it. I get salt tablets. Sweating can be bad and you are in a hot area - so you need them as well as hydration. That will help your blood pressure. You are not alone (there are quite a few, not as rare as you think!) and there is a lot to learn so you do not get yourself into trouble. Did you get yourself an emergency injenction and all? Made up a kit? Did you get other hormones checked? When one goes, sometimes others are effected.

     
    Old 07-26-2008, 08:08 AM   #3
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    Re: Hi, I'm new to this board and new to Addison's

    i started out on prednisone and florinef but after 6 months i switched to hydrocortisone by itself and i feel MUCH better on the hydrocortisone (also called cortef). i highly recommend making the switch. I have more level energy and moods now, less water retention, more even weight gain, and better sleep. the only disadvantage to it is that you have to take it more than once a day. I take it twice, other people take it 3 times.

    the best advice i got when i was diagnosed was to stay hydrated (which includes extra salt) and take medication routinely.

    you need to be careful of getting infections and of vomiting. I have become more prone to ear infections. but in a year i have not had a crisis!

     
    Old 08-24-2008, 02:22 PM   #4
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    Re: Hi, I'm new to this board and new to Addison's

    HI sorry to tell you but l never no wate each day is going to be like

     
    Old 08-28-2008, 06:47 PM   #5
    chris14
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    Re: Hi, I'm new to this board and new to Addison's

    I too am new to this board. I however am not new to Addisons. I was diagnosed with Addisons in 2001. I have been on medication ever since. I am 31 years old and I undergo symptoms of Addisons every day. I am on Hydrocortisone, Fluidrocortisone, and Synthroid. I am also mentaly helped by Cymbalta, Clonzepam, Seroqiil, and Buspar. Sometimes I wonder if any of this stuff is helping, other times I feel like it is helping. I have found limited but noticeable help from ginseng as well. I don't experiance weight loss anymore. But before I was diagnosed I did. If you need any knowledge about this disease just ask and I may be able to help.

    Chris

     
    Old 09-05-2008, 04:27 AM   #6
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    Unhappy Re: Hi, I'm new to this board and new to Addison's (plz add me)

    hi, my name is Rhys and i was diagnosed in late Augest 2004 and didn't know how to cope, i was extreamly depressed up untill now (year 11). i have recently gone off hydrocortisone and am now on prodicylone 2x and fluronef 1x and am now coping quite well, however i am not sure i am supposed to be feeling fatigued and or nausious and if not i do not know why. this is realy begining to concern me.

    Last edited by Administrator; 06-23-2011 at 01:57 PM. Reason: Please revisit the posting rules - posting contact information is disallowed.

     
    Old 10-19-2008, 07:08 PM   #7
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    Thumbs up Re: Hi, I'm new to this board and new to Addison's

    I'm new to the board but not to Addison's. I have it for over 5 years. Overall, my life is pretty normal. I am currently on 30 mg hydrocortisone and 1 mg florinef. Through trial and error I found out that if I split the dose through the day I feel better. But, if I take more than 5 mg before bedtime it interferes with my sleep. Big things I've learned: 1) Be very sure to keep hydrated with water. 2) If you ever vomit seek medical care immediately because you will go into another Addison's Crisis. 3) Limit eating high potassium foods since our potassium seems to run high anyway. 4) Don't get too rundown, the fatigue can really get you down. Good luck!

     
    Old 10-22-2008, 05:50 PM   #8
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    Re: Hi, I'm new to this board and new to Addison's

    Wow, I thought I was the only one that is living adrenal insufficiency, Hypothyroidism. I know every Doc I have seen has said there are others out there, but I have not talk to one yet. I have been diagnosed since 1985 and it's a long story. I try to live one day at a time and some times it's very tough. What keeps me going is my GOD and my Family. There are times when I think I have it so bad, I am humbled really quick. So I thank GOD for each day. I hope I can talk with someone soon that's going through the same issues. Thanks, chargonzo

    Last edited by chargonzo; 10-22-2008 at 06:33 PM.

     
    Old 10-24-2008, 04:02 AM   #9
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    Re: Hi, I'm new to this board and new to Addison's

    Chris14 - Interesting I just read your post here. We are about the same age. I just turned 30 in June.

    As you may have read I only just got diagnosed and am having a hell time trying to balance everything since starting on HC. Im not on florinef or thyroid meds, but wonder if either would help things.

    The emotional issues are difficult.. im getting alot of ups and downs. The HC is really giving me more brain fog and irritability on and off through the day. I take valium at night, but have done that for the last 4 years or so most nights.

    How do you find Cymbalta? I've read about it for Fibromyalgia which i have, sposed to help with pain and mood etc. Im so sensitive to meds but would love to find something to even out the moods and anxiety i've been getting. Considering trying Celexa as some find it helpful.. but it makes me very nauseous and shaky, so i never got past the first few days. I've been told those side effects could wear off, so will possibly try it.

    ~Chris.

     
    Old 10-24-2008, 10:57 PM   #10
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    Re: Hi, I'm new to this board and new to Addison's

    Just thought I would join in on the conversation! I am 23, diagnosed with Addison's about 2 years ago along with hypoparathyroidism. I live a fairly normal life and am on 30 mg of cortef a day, 20mg in the am and 10mg around noon. I also surprisingly got pregnant and am 16 weeks along and everything with the baby seems to be going well. As soon as I got pregnant I was also diagnosed with hypothyroidism and am on 50mcg of synthroid too!

    About 2 weeks ago they think I had a vasovagal syncope related to nausea which caused me to pass out. Well, I already have low blood pressure so this caused everything to dilate and my brain had a lack of oxygen for a minute or two which caused a seizure. I can't help but wonder if I had the seizure because of Addison's disease due to my already low blood pressure? I know it wasn't a crisis because I came to within a few minutes and with a crisis that wouldn't have happened unless I had some type of medical treatment. Everything is great with the baby, however I can't drive for 3 months which is annoying!

    Other than that incident I have been able to do just about everything that I have wanted to since being diagnosed.
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    Old 10-25-2008, 09:47 PM   #11
    chris14
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    Re: Hi, I'm new to this board and new to Addison's

    Well it is good to hear you are living a fairly normal life. I take similar meds and amount, but depression and anxiety tear me up,along with weight being jumping up and down. But it is good to see someone doing good.

     
    Old 10-26-2008, 05:52 AM   #12
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    Re: Hi, I'm new to this board and new to Addison's

    2jen, I agree, it's great to hear you're able to live well and normally since diagnosis. And congrats about the baby! Hope everything goes well during your time with it. I guess you might need extra meds sometimes, and need to be careful if you get morning sickness etc, but im sure ur endo's would've told you all that.

    So can you excercise and everything since diagnosis? Im new to this and am interested to know how much people can actually do. Having severe CFS is hard with it, havent been able to excercise for years now. I've been hoping once i adjust to the HC i may be able to again hopefully.

     
    Old 10-26-2008, 09:25 AM   #13
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    Re: Hi, I'm new to this board and new to Addison's

    I don't exercise like I would have before my diagnosis but I go on walks or we go to the beach. I really don't find it too limiting other then having to take it a little easier than everyone else.
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    Old 10-26-2008, 01:38 PM   #14
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    Re: Hi, I'm new to this board and new to Addison's (plz add me)

    Fatigue and nausea is pretty for common me. For nausea I try to eat something like crackers or breadsticks. The nausea is most common in the morning and I feel like it might have a connection with hydration being down after not having water all night. I'm tired all the time!! I just try to power through it.

     
    Old 11-01-2008, 02:53 PM   #15
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    Smile Re: Hi, I'm new to this board and new to Addison's

    Essie,
    How do you get tested for it? I have hypothyroidism and I heard that Adrenal failure is common when your thyroid isn't working, but my question to you is this, How can I get my doctor to test me for this?
    As of right now, I cannot leave the house I am so sick, so tired I can't cook, clean, or even take care of my beautiful two toddlers.
    Thanks
    Mia

     
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