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 nutshell...is 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...View Thread
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!View Thread