Adrenal Insufficiency

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Adrenal Insufficiency
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    Here we go again …..

    Good evening everyone….. sorry I haven’t been in here posting lately…. Health has been a shitshow lately and to be quite honest I’m just freaking tired… tired of all of it . Now I know ! That’s not very positive not very encouraging and not very uplifting. And for that I’m sorry!!! Headed into yet another adrenal crisis last nite …. All the while there husband is too tired from his golf nite to make sure I’m ok…. A couple questions “did you take your med s?” And after almost passing out and taking my bp “whats it reading?” Then back to snoring he goes …. So I guess tonites question is how do you all “deal with it” ? How long do you tell yourself “zig it s on”? Like I said I’m freaking g tired …. Sick and tired of being sick and tired! #husbandsUGH #AdrenalInsufficiency #tired #ChronicDepression #ChronicPain #AdrenalInsufficiency #Hormones

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    Low cortisol and Endocrinologists

    I’m posting this to see if I can get some helpful feedback. I’m trying to advocate for the best options to live my best possible life with adrenal insufficiency.

    I switched endocrinologists about two years ago because the one I’d been seeing for almost 10 years had me taking 7.5 of prednisone at bedtime. I was often miserable on this schedule and each time the prescription was refilled I got a lecture for having taken extra. Still my complaints about not feeling well fell on deaf ears. (I now understand we stayed with that endocrinologist far too long.) Once I started seeing the new endocrinologist she immediately switched me to hydrocortisone during the day. It was a DIFFICULT switch and my body kept trying to crisis during the night. At some point during the transition my dose was up to 60+mg of hydrocortisone. Sometimes it felt like I was narrowly avoiding hospitalization still.
    I was also started on Fludrocortisone, but so far can only tolerate half of a .1 tablet every other day or my blood pressure gets way too high.
    For the last year I’ve been regularly meeting with a physicians assistantthrough the endocrinologist office and she’s been trying to help me work on a plan to taper my maintenance dose to something more sustainable. I’m currently taking 15mg @ 5:00 am, 10mg at noon , 10mg @ 6:00 pm. I’ve probably been on this particular schedule for a month or more and I’m starting to feel pretty crummy mid morning and late afternoon especially. I had labs drawn and my 9am cortisol was 1.6, and my ACTH was 158. The physicians assistant has recommended taking 5mg. from my 6PM dose and adding it at 9:00am. I am struggling to see how that will help me? I know this post is kind of long. I’m trying to decide what my next best advocacy step is? Thanks! #addisons #AdrenalInsufficiency

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    Spring Fever/Real Life Envy

    I've been having a bad case of "real life" envy with our sunny, warm early days of Spring. Spring is here. I'm seeing people's activities on these first sunny, warm days - starting work on projects, Spring break trip plans . . . Honestly, it breaks my heart. Not because of others, but because nothing changes for me. It doesn't matter what Season it is. It's all the same inside. There's nothing in my future except more decline. I've managed a short sit out on the deck on our sunny days when the wind isn't so brisk. I enjoy the sun, but two things make it wistful for me. First, just feeling so weak and ill I can barely sit there so it's just a tiny consolation not to have let the opportunity to get outside for a few minutes totally escape me. Second, it's always longing for more. I want to feel well and be able to enjoy Spring and do things that people do in Spring. I love Spring, but it doesn't love me. I stay sick with seasonal allergies all Spring even with meds and mask wearing. Then by mid June, if not before, it will be too hot for me. So I want some Spring enjoyment now. #ChronicFatigue #mitochondrialdisease #AdrenalInsufficiency

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    A Glimpse Into My Mind---4 Years Later

    Many paths built upon various terrain have updated my perspective quite radically. Within many battles with the external world, I have developed a rich internal world. I would like to share how it sounds and feels and tastes and smells and what a sight it is. #BipolarDisorder #ChronicIllness #ADHD #CysticFibrosis #SensoryProcessingDisorder #PosturalOrthostaticTachycardiaSyndrome #EhlersDanlosSyndrome #ExocrinePancreaticInsufficiency #cysticfibrosisrelateddiabetes #Diabetes #AdrenalInsufficiency #MentalHealth

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    Roll call!

    <p>Roll call!</p>
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    From The Mighty to TEDx

    <p>From The Mighty to TEDx</p>
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    The 3 Little Words That Changed My Life

    It was a routine day in the office on Nov. 12, 2012. People were buzzing around, meetings were in full swing and phones were ringing. I was working away on my computer when suddenly, my phone rang. I looked at the caller ID to see it was from a private number. My heart started pounding as I walked away from my desk to answer. A call from a private number meant it was a doctor, and that kind of call means one thing — there is terrible news on the horizon. For months, I had been searching for answers for a wide array of symptoms that continued to worsen. Every doctor I saw eventually threw their hands up and suggested I seek psychiatric help. Through more online research, I found out about this doctor. She was completely self-pay, but she had testimonials from many that she was the only one who could figure out what was happening in their bodies. As I answered, I heard her voice. And after a quick exchange of pleasantries, she lowered the boom. “You have Lyme.” Lyme? I couldn’t believe it. I am one of the least outdoorsy people you could ever meet. I don’t go hiking, camping or exploring in the woods. You will find me inside in the comfort of air conditioning at all times. But the test results were undeniable. My test showed results even the CDC would agree is Lyme. As I crumpled to the ground, unsure of what to do next, she began to talk about treatments, medications and dietary changes. But, I heard nothing. I comprehended nothing. I was in a place of utter shock and denial. At the end of the call, she said, “I’m so sorry we didn’t catch this sooner.” And as she finished the sentence, she began to choke up. It was then I knew I was in serious trouble. For the next nine months, I embarked on a heavy-duty treatment regimen of oral antibiotics, IV antibiotics through a PICC line, and bottles and bottles of supplements. During that time, I had surgery to remove my gallbladder and discovered an abnormal heart rhythm that required more investigation. I lost my sense of taste, developed a facial droop from Bell’s Palsy and racked up over $100,000 in medical bills. And this was all in addition to the symptoms I already had that caused me to seek out medical help. As my treatment ended, I was certainly feeling better than when we started. But I was nowhere near where I was before the Lyme invaded my body. My doctor said, “I will consider this a major success if we can get you back to 80% of who you were before.” That never happened. Thanks to the Lyme invading every part of my body and crossing over the blood-brain barrier, additional conditions and diseases began to take hold. My medical history grew to include hypothyroidism, adrenal insufficiency, interstitial cystitis, inappropriate sinus tachycardia, postural orthostatic tachycardia syndrome (POTS), migraines with aura and chronic kidney disease. There were two things all of these conditions have in common: 1. My doctors believe each is a result of having Lyme and … 2. Each one is chronic with no cure And because it took so long to determine I had Lyme to start treating it, it is now considered chronic as well. As one of my doctors says, if my body is overwhelmed by anything, including one of the other chronic illnesses I have, the Lyme can come back out to play. So I live my life on the edge of which symptoms I will deal with each day and when and if the Lyme may come back. Lyme and the chronic illnesses that followed forced me to miss many family events and everyday life. I have been absent for so many milestones, and my child has never known a world where his mom is well. It is a devastating disease that is underfunded and in desperate need of better testing and treatment protocols. One day, I hope to look back and understand the purpose behind these trials and tribulations. And to be able to see those three little words, you have Lyme, were somehow worth the struggle.

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    Got Goals?

    <p>Got Goals?</p>
    5 people are talking about this