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    Epidural Steroid Shutting Down Adrenals?
    complexgirl posted:
    Hello, I'm a female in my early-mid 30's, 5'8", 120lbs, and am wondering how long one should wait following a steroid epidural before diagnosing adrenal insufficiency, and starting hormone therapy. This was my first steroid epidural for a herniated disc, and had adverse side effects begin within minutes following the injection, most of which still continue.

    It was discovered a few weeks from the injection that my a.m. cortisol was 1.9. Another a.m. draw was taken a month from the date of injection, and it remains at 1.9. I have received conflicting advice on the duration in which one must give the adrenals time to kick back in before a diagnosis and therapy is given; being one month from date of injection, to 3-4 months.

    I'm concerned about how long to wait, as my symptoms have been moderate to severe, keeping me down, and making me feel extremely miserable! (I am in bed most of the time, as most forms of excursion, such as showering, attempting hold a conversation, or getting out of the house for a few hours, will exacerbate the symptoms). However, I want to make sure I don't prematurely start HT if can be avoided as well!

    My symptoms following the injection are: Extreme exhaustion*, muscle weakness/tremors*, cognitive issues*, jaw pain, muscle/leg cramping*, high salt and sugar craving, increased urination, high anxiety, anxiety attacks, insomnia*, hallucinations during sleep paralysis or upon waking, night sweats*, standing headache, frequent migraines*, rash on face for a month that continues to worsen, dry patchy skin, blurred vision that comes and goes, weight loss*, unexplained teeth and gum sensitivity, dizziness and buzzing feeling in head upon waking, occasional fever 99-101 lasting approximate 4-6hrs

    (Also to consider: I have been diagnosed with hypothyroidism and narcolepsy, and have an undiagnosed autoimmune. I've already been dealing with the asterisked symptoms above, but either not quite the same, as frequent, or extreme. Fibromyalgia is also diagnosed, but is unknown if it is primary or secondary. I have been treated with prednisone and hydrocortisone three times prior to the steroid epidural, treatments ranging from a week to 2-3 months, but suddenly started having adverse affects to any steroid but hydrocortisone earlier this year...of which was communicated strongly to the doc giving the injection.)

    In a it safe for my level to remain at 1.9 with my current symptoms for months? Or, should this be addressed sooner than later? I am hoping they will test my ACTH this week...
    Anon_57995 responded:
    Addison's disease is a condition in which your adrenal glands do not make enough of certain hormones. This is called primary Addison's disease, and it's most-often an auto-immune disorder

    The condition is named after a Dr Thomas Addison who first described it in 1855.

    A temporary form of Addison's disease, called secondary adrenal insufficiency, may occur when a person who has been taking a synthetic glucocorticoid hormone such as prednisone for a LONG TIME stops taking the medication, abruptly.

    This form of Addison's disease does not result from epidural steroid injections, but by taking glucocorticoid hormones by mouth.

    Epidural injections would be less likely to contribute to secondary Addison's than the oral prednisone/ cortisone by mouth for the two-three months you had this treatment before.

    Glucocorticoid hormones, which are often used to treat inflammatory illnesses such as rheumatoid arthritis, asthma, and ulcerative colitis, block the release of both CRH and ACTH.

    As a result, the adrenals may begin to atrophy"014or shrink"014from lack of ACTH stimulation and then fail to secrete sufficient levels of cortisol.

    This secondary Addison's disease is usually self limited; it many times resolves with no intervention.

    If you haven't yet been evaluated by an endocrinologist, you may want to consider doing so.

    The ACTH stimulation test is the most commonly used test for diagnosing adrenal insufficiency.

    In this test, blood cortisol, urine cortisol, or both are measured before and after a synthetic form of ACTH is given by injection.

    When the response to the ACTH test is abnormal, a CRH stimulation test can help determine the cause of adrenal insufficiency.

    I'm curious as to how you were diagnosed with narcolepsy, and what sort of auto-immune you have that is un-diagnosed. Does your doctor suspect that you may have primary Addison's disease as an auto-immune disorder?

    Are your baseline fibromyalgia symptoms much less severe than how you're feeling now?

    Good luck, and I hope that you consult with an endocrinologist.
    complexgirl replied to Anon_57995's response:
    Hi, thank you for the reply! I am currently under the care of two endocrinologists, per se. (One is not close, so is not as easy to work with; the second I'm currently working with is near me.) This is where I'm receiving conflicting information. Both agree that the steroid injection could have led to my low cortisol, and agree it's possible to restore on their own; it's how long to give them is the question. Are you familiar with how long it could/should take for the adrenals (pituitary?) to kick back in? And, is it common to have these extreme symptoms, for this long?

    I do wonder if this was already an underlying condition, or is the primary autoimmune. However, Addison's as a potential, primary autoimmune has not been verbalized to me. I am very sensitive to medications, and can only tolerate low doses of the meds I take. I have had multiple, low AM cortisol draws for a few years, but the ACTH test came back normal. I also had an MRI show a bulge on the pituitary; the second scan of the pituitary came back normal. Then they saw a shadow on the pituitary in an MRI this year, but that came back insignificant. (Which they are hopefully, and most likely, are.) Seeing a pattern of inconsistent false-positives over years, then this, does raise questions though. My diagnosis of hypothyroidism this year was surprising, as I've always had issues with the ability to gain weight, along with episodes of weight loss. And I have a very healthy appetite that can out eat many!

    Regarding my narcolepsy, I was diagnosed from a sleep study, and sleep latency test. Symptoms: since a child I have had issues with insomnia, inability to wake, sleep paralysis, lucid dreaming, vivid dreams, night terrors, and EDS. I also become suddenly exhausted from emotional situations such as fits of laughter, exciting or sad news, etc. So, it's not the typical, suddenly falling asleep, cataplexy, narcolepsy.

    Lupus, Crohn's, and MS (which runs in my family), have been ruled out, along with other rare conditions and muscle myopathies. Along with fibromyalgia and narcolepsy, my other diagnoses are Reynaud's (since birth), hyperglycemia, hypothyroidism, mild mitral valve prolapse, sensitive vasovagal syndrome, migraines, tachycardia, ovarian cysts, and endometriosis and POTS are suspected. I have slightly elevated WBC, CPK and calcium levels that fluctuate, which are being looked into. I have multiple lesions on the brain, none on the spine, but are said insignificant to MS, and are most likely from migraines.

    My symptoms prior to the steroid epidural and adrenal fatigue are: worsening exercise intolerance, muscle spasms/weakness/cramping, leg paralysis (two episodes lasting 3-5 min), digestive issues from one extreme to the other (sometimes with prolonged vomiting), exhaustion, insomnia, night sweats, standing tremor, dry skin and eyes, heat and cold intolerance, painful swelling in feet and ankles from prolonged standing or heat, rapid heart rate, tingling and numbness in extremities, light sensitivity, vision issues, hot flashes, occasional rash on face/chest/back (not butterfly rash), sudden weight loss

    So, I was already was battling a lot before this hit. Just when you think you can't feel worse! I quit my job over a year ago due to my worsening symptoms. Now that I'm essentially bedridden, a lot of my life, along with my career, is on hold, When feeling "ok", I'm a physically and socially active individual. Both are very important to me. I'm also a very stubborn and determined individual, so feeling poorly for so long, and now adrenal insufficiency in play for going on two months, is frustrating.

    Thanks again for taking the time to read my post and offer guidance! If you have any more questions or advice, please let me know

    Btw, have not had a CRH stimulation test. I will definitely bring it up if my ACTH results are abnormal!
    annette030 responded:
    Do exactly what your doctor tells you to do, especially if you know and trust him/her.

    Take care, Annette
    mythicagothigaone replied to complexgirl's response:
    Hi. Have just been reading your posts and noticed your symptoms seem very similar to my own. I have had post traumatic fibromyalgia for close to 20 years and have been ok up until the last 3 years with bloating, fatigue and shortness of breath with it getting so bad now I can barely function. I wake up and then have to go back to bed as I can't even stay awake.I have almost all of the symptoms you describe apart from my blood tests are only showing a low egfr and high creatine and had a 24 hour heart monitor that picked up a heart palpitation and extra electrical stimulus not related to the creation of a heart beat. Thought it might be dysautonomia (with mitral valve prolapse) but am now thinking it could also be because of adrenal insufficiency. Would love to know more about your ACTH results as my doctors won't do anything until an echocardiogram and I don't have any specialists who know enough about all this! I really feel for your situation as I know how hard it can be and am happy to chat if you are stuck in bed and need a bit of support!
    lahiat responded:
    Since it has been so long, I truly hope you have found the answers and care you need. I have found that many of the diagnoses your symptoms support are Adrenal Insufficiency related, and border on Addisonian Crisis, so you shouldn't have postponed treatment.

    I pretty much know that, at least for last 10 years I have been dealing with symptoms of subclinical Addisons, level 3, and more, including what I was thinking was only a flareup of the fibromyalgia for the last few years. Now I know differently, so am hot on the trail to recovery. I also share overlap with some of your mental health and other concerns.

    I just had an apparent Addisonian Crisis after a spinal epidural, so was looking for the answer you received, but would appreciate hearing from you about your journey over the last year.

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