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  • misdiagnosed addisons

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    Old 10-15-2002, 03:27 PM   #1
    kaci1234
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    Post misdiagnosed addisons

    All my symptoms mimic addisons disease exactly, especially the dark pigmentation, and weight. I asked to see endocrinologist, but my doctor wouldn't refer me. She did a blood test in the surgery,apparently for addisons, and it came back negative. I have heard there is a more specific test that can be done.

    Is there a possibility the first test could be wrong or you can have the disease without anything showing up in the blood test, (or the stimulation, specific test). Iam desperately ill, so would appreciate any responces.

    I have also thought if i have addisons symptoms, but disease not showing up, could it be something wrong with my pituitary, thats messing me and test results up? Thankyou.

     
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    Old 10-15-2002, 09:08 PM   #2
    Cannn
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    I don't know about what the tests that are out there for Addison's are exactly, BUT, I'm pretty sure that if it was Secondary Addison's - the kind caused by a pituitary problem - you wouldn't have the dark pigmentation symptom.


     
    Old 10-15-2002, 11:38 PM   #3
    orion
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    What test exactly did your doctor do? If you don't know, phone them and find out. So as far as I know there is no immediate blood test you can do to diagnose Addisons. You need to have a provocative test done by injecting ATCH to stimulate your adrenal glands and then detect the lack of cortisol produced. That isn't something a normal doctor would do during surgery.

    My guess is you need a new doctor.

     
    Old 10-16-2002, 12:46 AM   #4
    kaci1234
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    Thank you for replying.

    I have asked what the test was for, but i could not get her to tell me. So I got a copy of my results - which at first they refused to give me. When I got my result sheet it just had a load of numbers on it, so I don't know what it means. I saw that cortisol was written on it though. It does not say 'normal' or anything on the sheet. But I doubt my doctor because I sat there weighing barely 6 stone, and she said there was nothing wrong, and told me 2 go home and take 2 paracetomol. I argued with her over this, and after 10 mins she laughed and said, 'no your weight is not normal' - but thats as far as it gets. I moved to her, because my previous doctor had a similar attitude, and when saying about the pigmentation, he said I was dirty and to go home and have a wash.

    Should I insist on this other test you mentioned?

    kaci

     
    Old 10-16-2002, 09:27 PM   #5
    orion
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    Quote:
    Originally posted by kaci1234:
    Thank you for replying.

    When I got my result sheet it just had a load of numbers on it, so I don't know what it means. I saw that cortisol was written on it though.

    kaci
    The sheet must have words or letters followed by numbers like:

    ast 15 IU/L

    esr 5 MM/HR

    or is it a list of numbers with headings? Otherwise it would also be meaningless to doctors too. So either your doctor has only given you part of the results or you have left something out.

    First, remember your doctor works for you.....not the other way around! If you went to have your car repaired and they told you they didn't know what they did or what parts they fixed but pay $500 anyway, you wouldn't pay until they explained themselves. Similarly, your doctor owes you an explanation of what she is doing and why. This is your life and you are entitled to INFORMED care. As far as I know there is NO single blood test that can show Addisons disease. If you are concerned, insist on seeing an endocrinologist if for no other reason than to ease your mind.

    Phone the doctor's nurse and ask what the name of the test is and why its not on the paper they gave you.



    [This message has been edited by orion (edited 10-17-2002).]

     
    Old 10-27-2002, 04:51 PM   #6
    alesi27
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    in the blood test results it should give your values and the normal valuse for each test .
    in mine my sodium levels where really low
    potassium a bit high
    and something wrong with the white blood cell count?

     
    Old 11-30-2002, 09:30 PM   #7
    mariethepoet
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    i am a 38 yr old female who has been all over north texas trying to find help.I started having health prob.in1990 after I had a cortisol inj.I have very dark cicles under my eyes;tire very easily to the point my hands shake so bad I can't hold a glass to take a drink.at first this only happened on rt.side.But now my left side is starting;vision problems;weigt loss and weight gain.My doctor sometimes makes me feel like a hypocondriact.But I have been told by 2 docs. that I have addison's and have been on prednisone for about 8 or 9 yrs.Please help me with info on this very hard to treat illness.The pain and headaches are so bad I take presc. medication for it.And the steroiods do harm your body.I have developed osteoporosis already.Ialso heard on news that premature menapause can cause some women to develope addison's and I had to have a hysterectomy when I was only 27.


     
    Old 01-26-2003, 01:03 PM   #8
    gritsla
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    If you are in Texas.....I found results at the Houston Diagnostic Hospital....and traveled 6 hours to get there....

     
    Old 03-17-2003, 03:02 PM   #9
    Janis Rafael
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    I can't state enough how the saliva test saved my life because I finally knew what was going on. An endocrinologist disregarded my results and said I don't have a cortisol problem. That is why you have to go to a holistic M.D. to get the test. Dr. Poesnecker at [url="http://www.chronicfatigue.org"]http://www.chronicfatigue.org[/url] will send you the test and tell you how to use it. DHEA levels are also checked because if the values are too low, and the ratio of cortisol/DHEA are imbalanced, you will not feel good. Don't give up, there are many people who have this problem and answers are being found. Good luck! Janis Rafael

     
    Old 03-30-2003, 04:17 PM   #10
    abc47
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    You really need to see an endo and get the correct tests. I was misdiagnosed for years and had all the symptoms you are having! The only thing that would come up on a blood test, possibly, is the higher levels of sodium and decreased levels of pottasium. After I was diagnosed, from an addisonian crisis that led me to the emergency room, an amazing doctor diagnosed me on the spot by taking one look at my dark skin color. He sent in an endo and they started me on steriod ivs and then gave me a cortisol test which came back the next day positive for addison's disease. They will also have to do an ACTH test. Please pursue this! You need to feel "normal" and what a feeling it is! Good Luck!

     
    Old 04-02-2003, 06:07 PM   #11
    cathyk
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    Janis Rafael - I had the same saliva test done (also blood test) and I agree with you completely. My MD prescribed natural cortisol and DHEA for me and it's helped so much with the physical pain and fatigue/exhaustion.

     
    Old 05-12-2003, 06:44 PM   #12
    Eagle
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    Kaci, I'm so concerned for you because I think you need to run, not walk, away from that doctor,and you could always return later if you decide to, w/out burning any bridges. You do not need permission or owe one word of explanation, can play your cards close to your chest. No doctor owns you. Sounds like she's afraid of losing you, and of you taking control of your own life. By asking, you learned at least that.

    On another thread I told some of my similar experience with a doctor who seems to feel entitled to an income from me just because I'm supposed to get reimbursed for ofc visits by insurance, and even if I get no benefit, no treatment. I think his patients who trust him must be dwindling. I said on the phone to the girl that I was still having trouble with the toenail fungus, for one thing, and she read off something she thought he'd prescribed, which he didn't, just doctored the record!

    We can be flat-out lied to about what was done or not done, and our records falsified. A week or two ago I memtioned still having my toenail fungus from a year ago, although the nail has finally grown back, and the girl read from the record something he claimed to have prescribed, but he didn't. He has some buddies and wanted me to see a dermatologist. But this is a systemic disease, and is a symptom and/or maybe a partial cause of Addison's. I'm really ticked.

    They work for us, whether or not the money is paid by insurance, and are not entitled to a living at our expense, through our efforts. Instead of correcting his error during the appt I paid for a year ago, he wanted to "look at it" again, and divide me up among his cohorts, a dermatologist. Nail fungus is systemic, not a skin disease, anyone knows.

    Sounds like you're English? How much wt. is 6 stones?

    I have to agree with Orion, most definitely.

    [This message has been edited by Eagle (edited 05-13-2003).]

     
    Old 05-13-2003, 03:42 PM   #13
    Tzu
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    14 pounds in a stone.

     
    Old 05-17-2003, 12:06 PM   #14
    siucra
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    Kaci 1234,

    What part of the UK do you live in? I know a doctor who practices in Harley Street, London who can help you if you can get there. I'll post his name if you are interested.

    Siucra

     
    Old 05-19-2003, 12:38 AM   #15
    jenby
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    Can relate to your stress about misdiagnosis. My mother in law was diagnosed (In London) eventually after becoming ill slowly over a period of time. She had the pigmented skin, weight loss, extreme nervousness etc and thought she was going mad. Finally there was a connection made between the fact that as a teenager she had had TB. This can be a leading cause apparently. So, check out all your past history (medically) and go over it with you doc. Good luck
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