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  • Daughter back to testing for Addisons, any advice?

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    Old 12-06-2007, 10:17 AM   #1
    grinchydizz
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    Daughter back to testing for Addisons, any advice?

    Hello, I posted here before, several months ago, but back, just wanted to update regarding my daughter. Maybe someone has some advice. Anyhow, since over a year now, my daughter has had symptoms of addisons disease. one endo suspected it, and yet another said no. Meanwhile, she has been ill. same symptoms, and yet some new. Now, she is starting to lose her appetite and lost a few pounds in just a couple of weeks, her heart will start to race, but her blood pressure is low. She passed out last month, all she was doing was sitting down, so they took her to the er, and the only thing was her bp was lay, but upon standing, it would drop more, but her pulse would raise. Now the doctor has her on a 30 day heart monitor, so hopefully they can rule out if its heart related. I still think its cortisol related, or something like that, she has most of the sypmtoms I have read about. She will have a follow with a new endo the middle of this month, I hope he can help out. Well, just thought I would give a quick post here....

     
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    Old 12-06-2007, 04:46 PM   #2
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    Re: Daughter back to testing for Addisons, any advice?

    Has she had an ACTH stimulation test? That would be the test for Addison's.

     
    Old 12-07-2007, 11:09 AM   #3
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    Re: Daughter back to testing for Addisons, any advice?

    Hello, funny thing is she had two of these tests, the first one, after the doctor have her the injection, she experienced and "episode", where she gets extremely fatigued, passes out, etc, while taking the test. but, they did the blood draws, and then the endo called me with the results, and said she was right at the criteria for addisons, but they re did the test, and that came back fine. so, two exact tests, two results. that was last year. Now, she is getting more symptoms, and now, I am noticing the skin discolorations. On the weird places, I firtst noticed in on her eye lids, like she is wearing brown eye shadow, but she doesnt wear any make up at all. In fact, she is very modest, always wears clothes that cover just about everything, but I had her show me her legs and she has very, very dark moles, or freckles, almost black. so, Im wondering if that could be a result of whats going on with her. I hope they do more tests,though. Is there anything else I should look out for?

     
    Old 12-07-2007, 11:20 AM   #4
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    Re: Daughter back to testing for Addisons, any advice?

    Nausea, vomiting, weight loss, low blood pressure, low blood sugar, and dehydration are all signs of Addison's. Maybe they should do the test again. My first two ACTH stim tests were "normal", too, but later they discovered that I had completed adrenal insufficiency. Did they do the 90-minute test as opposed to a shorter one?

     
    Old 12-07-2007, 11:36 AM   #5
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    Re: Daughter back to testing for Addisons, any advice?

    Quote:
    Originally Posted by gettin' better View Post
    Nausea, vomiting, weight loss, low blood pressure, low blood sugar, and dehydration are all signs of Addison's. Maybe they should do the test again. My first two ACTH stim tests were "normal", too, but later they discovered that I had completed adrenal insufficiency. Did they do the 90-minute test as opposed to a shorter one?
    Hi not sure whether this is the correct way to contact you but I was very interested to read that your first 2 ACTH tests were normal. I am in the UK and we call it a synacthen test here. I have just had my second test. It was a longer test than the first. I hope to get the results on Monday. Do you have primary Addison's?

     
    Old 12-07-2007, 11:42 AM   #6
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    Re: Daughter back to testing for Addisons, any advice?

    I had the shorter tests first, and they were "normal". The longer one was administered in the hospital. I do not have primary Addison's, but have complete pituitary failure, which means I have secondary Addison's, hypothyroid, and growth hormone deficiency. I take meds for all of those things and am doing quite well now. Good luck with getting your diagnosis.

     
    Old 12-07-2007, 12:39 PM   #7
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    Re: Daughter back to testing for Addisons, any advice?

    Quote:
    Originally Posted by gettin' better View Post
    I had the shorter tests first, and they were "normal". The longer one was administered in the hospital. I do not have primary Addison's, but have complete pituitary failure, which means I have secondary Addison's, hypothyroid, and growth hormone deficiency. I take meds for all of those things and am doing quite well now. Good luck with getting your diagnosis.
    Thanks for your reply. Can I ask what meds you are taking? My doctor suggested hydrocortisone and fludrocortisone for me but I requested a second test before making the decision.

     
    Old 12-07-2007, 01:02 PM   #8
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    Re: Daughter back to testing for Addisons, any advice?

    I take 15 mg. of Cortef, but not Florinef. I take Synthroid for my thyroid, and human growth hormone by injection.

     
    Old 01-28-2008, 06:05 AM   #9
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    Re: Daughter back to testing for Addisons, any advice?

    I, too, had all the symptoms (passing out, fatigue, weight loss, low blood solium, high blood potassium, etc) but normal ACTH stimulation test so I was sent back to the family dr. Nine months later I tested low for aldosterone (cortisol was still normal) so my dr. started me on prednisone and Florinef. So, don't give up-- sometimes the symptoms appear long before the lab tests show Addison's.

     
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