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Addison's Disease Message Board

  • Need Advice - Seeking diagnosis

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    Old 09-04-2015, 07:16 AM   #1
    RMTWHITE
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    Need Advice - Seeking diagnosis

    Hi there...
    thanks for taking the time to read my post. I apologize in advance for the length. Iíve had chronic health issues for the past five years, and Iím just at my wits end. I donít know where to go from here, and Iím wondering if I may have undiagnosed Addisonís disease.

    My symptoms started in 2010 when I got a bad chest cold/cough. A doctor at the immediate care prescribed steroids and cough syrup. The cough went away, but I was left with debilitating fatigue, shortness of breath, and chest pain. At the time, my doctor and I believed these were just complications due to a congenital deformity called pectus excavatum.

    In May 2011, I had surgery to correct pectus excavatum. During the week-long hospital stay, I was miserable. I was in a tremendous amount of pain, but the doctors could not medicate me properly because my blood pressure kept dropping too low. Finally I was in so much pain that my heart rate climbed over 200. They finally got everything under control, but I donít remember much from that week since I was in such a haze from all the meds and stress. When it was finally time for me to get up out of bed, I fainted. I had to work with a physical therapist for a couple days before I could leave the hospital.

    I did pretty well after I left the hospital and went through more physical therapy. My shortness of breath was gone, and my fatigue improved (although it never went away). But in June 2012, I started having pain around my chest again. I thought it was due to the surgical bar they put in during surgery, so I went back to the surgeon. He recommended ibuprofen. *rolls eyes* By December 2012, the pain had spread to my entire body and the fatigue was getting bad again, so I went in for a pain injection, which hurt like hell and didnít do much to relieve the pain.

    In 2013, the surgical bar was removed, and that surgery was much less invasive, so I didnít have the same complications. I had hoped having it out would help relieve some of my pain, but it hasnít.

    Since 2012 I have been dealing with progressively worsening symptoms:

    Fatigue
    Full body aches/pains
    Dizziness
    Digestive issues - abdominal pain/cramping, hemorrhoid (sorry TMI!!)
    Nausea
    PMS and menstrual irregularity
    Acne
    Foul body odor
    Weakness in my legs and hips
    Tingling in lower legs, feet and fingertips
    Shakiness
    Excessive thirst
    Salt cravings
    Daily headaches - occasional migraines

    My doctor has diagnosed me with fibromyalgia, and Iím just too stubborn to accept it. Weíve done tons of testing. Most have come back normal (including normal thyroid function), but some numbers caught my attention. My cholesterol is low. My morning cortisol level was low-normal in March, and my blood sodium levels were low, which is why Iím wondering if I could have early Addisonís. I also have psoriasis, so having one autoimmune condition makes me worry I could develop another. Iím on adaptogenic herbs for my adrenals, which have helped bring my blood pressure back up to my normal level, so I havenít been feeling as dizzy the past week.

    My symptoms do seem to be cyclical. Do any of you notice that your symptoms get worse/get better depending on your ďtime of the month?Ē

    Almost wondering if I should stop taking the adaptogenic herbs so I can get an accurate diagnosis?

    How did you approach getting diagnosed? Did you have to be aggressive about it?

     
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    Old 09-05-2015, 09:31 AM   #2
    ladybud
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    re: Need Advice - Seeking diagnosis

    You do have some of the classic signs and symptoms of Addison's, plus a few others. The fatigue, low sodium, low BP, dizziness, nausea, GI problems, thirst and salt cravings are all consistent with it. Since you had borderline low cortisol levels in March, I would get them repeated at both 8 AM and 4 PM if you can. It helps to have both levels done since Cortisol has a diurnal pattern that causes fluctuation during day, and will be more likely to show something if you have both numbers. If it is not conclusive, an ACTH stimulation test should be done by an endocrinologist. They give you a dose of medicine to stimulate the adrenals, then see how your adrenals respond. A low response indicates Addison's. The aches and pains may be unrelated, and I would wonder if you have some psoriatic arthritis going on. A rheum would be the one to help with that question. Finally, if Addison's is NOT the culprit, I would get testing done for lupus, which could be done simultaneously while all the blood draws are occuring. That combo should give you a head start on getting diagnosed. Please let us know what transpires, and wishng you better days ahead!

     
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    Old 09-05-2015, 01:41 PM   #3
    RMTWHITE
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    Re: Need Advice - Seeking Diagnosis

    Thank you, Ladybud, for the thoughtful reply. I am just blown away by the kindness of everyone I have seen on this forum. I appreciate it so much.

    I have tested negative for lupus as well as arthritis. I've had so many doctor appointments and tests over the past year. Getting to the bottom of this has been like full-time detective work.

    Thank you for recommending the diurnal cortisol testing. I will definitely look into that. Do you know if I would need a referral from my doc in order to see an endocrinologist?

     
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    Old 09-06-2015, 06:39 PM   #4
    ladybud
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    Re: Need Advice - Seeking Diagnosis

    That would depend on the type of health insurance you have. You could get the regular serum cortisols done by your PCP and check insurance to see if a referral to specialists is needed.

     
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    Old 09-27-2015, 08:48 AM   #5
    Grlbama
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    Re: Need Advice - Seeking diagnosis

    Hi, I'm brand new to this site and was looking for some info for myself. However, after reading your symptoms I wanted to offer a suggestion. I stumbled upon a website that has helped me tremendously with getting answers for some of the same symptoms you have. It's called Stop The Thyroid Madness and it is a huge well of helpful info on thyroid & adrenal problems (which can run hand in hand). I highly recommend you check it out!
    My husband has Addison's Disease and hypothyroidism and that site is dead on with its recommendations on tests and possible diagnosis for some odd symptoms that most doctors don't consider with adrenal issues.
    Just thought it might help you a much as it's helped me now I'm off to try and get some help for my own health issues
    Thanks!

     
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    Old 09-27-2015, 09:02 AM   #6
    RMTWHITE
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    Re: Need Advice - Seeking diagnosis

    Quote:
    Originally Posted by Grlbama View Post
    Hi, I'm brand new to this site and was looking for some info for myself. However, after reading your symptoms I wanted to offer a suggestion. I stumbled upon a website that has helped me tremendously with getting answers for some of the same symptoms you have. It's called Stop The Thyroid Madness and it is a huge well of helpful info on thyroid & adrenal problems (which can run hand in hand). I highly recommend you check it out!
    My husband has Addison's Disease and hypothyroidism and that site is dead on with its recommendations on tests and possible diagnosis for some odd symptoms that most doctors don't consider with adrenal issues.
    Just thought it might help you a much as it's helped me now I'm off to try and get some help for my own health issues
    Thanks!
    Thank you for the suggestion! I'll check it out!

     
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