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Addison’s Disease Diablog: Two Women, Two Accounts

November 3, 2009

Lauren and Grace collaborated on this Diablog. Both have Addison’s disease.

Lauren: When Grace landed on my blog while doing a search for “how to live while living with Addison’s disease,” her quest and her use of language immediately resonated with me. An e-mail marathon ensued, and I invited her to co-author a chronicle of the pre-diagnostic, diagnostic, and management phases of our Addison’s journeys. We both live in the U. S.: I live in the Pacific Northwest; Grace lives in the Northeast. We are the same age, 58, both married, and we both believe that all events transpire not by random coincidence, but through the sovereign providence of God.

Lauren: The most remarkable detail I experienced a few months prior to my diagnosis of primary autoimmune Addison’s disease was that I knew I was dying.

Grace: For the two years prior to diagnosis I thought I was just getting old and slowing down. I’d joke, but it wasn’t really funny for me, that Wednesdays now felt like Fridays- I was running out of steam. If only I had known how true that was-I was running out of the stuff that drives the human engine, cortisol.

Lauren: I have a bloodline imperative that becoming an invalid is not an option. I have a routine. I have certain tasks that I do the same day each week. I have fibromyalgia and arthritis, so I budget my energy with the routine to try to belay total crashes that can last for days. I have certain rules that I follow to maintain my routine and to prevent stress. One of these rules is that I don’t go to bed during the day no matter how tired I am. If I fall asleep reading, that’s okay, but I don’t go to bed unless I have a fever and a serious acute illness, something that very seldom happens.

Grace: There was one rule growing up in our house-sickness was a personal weakness to be avoided at all costs. Not having a stoic personality, I earned an undeserved reputation for being a slacker. To combat this, and to help put food on our table, I developed an insane work ethic: I valued myself on the basis of how much money I was able to bring home. My career as a RN started out at the same time I became married and a new mom-at the tender age of 21. I thought crazy amounts of stress were normal, when in reality it was all I had ever experienced growing up. It took me close to four decades to realize what a nearly-deadly lifestyle I had embarked on.

Lauren: In the summer of 2007, I became faint walking to my laundry room. I was unable to stand for any length of time. I hyperventilated trying to speak. I simply had to lie down, sometimes after being up only a couple of hours in the morning. I recalled the humiliation and misery I experienced with doctors who did not believe in fibromyalgia. “There’s nothing wrong with you,” rang again, loud and clear.

Grace: Over the past two years I had begun to call out frequently on Thursdays and Fridays because I thought I was falling asleep at the wheel — in retrospect, I was having pre-syncopal (pre-fainting) episodes. Only by the grace of God I did not actually pass out and potentially injure someone else. I know of a woman who was diagnosed only after she passed out — at the top of her steps. She fractured multiple vertebrae and spent most of the next year in the hospital and rehab.

Lauren: I researched my symptoms, and came up with “adrenal fatigue” as a match. Unfortunately, naturopathic sites promoting adrenal fatigue can be a great disservice. I settled for this diagnosis, took extra vitamin C, and figured I would tough it out five or six weeks. If my symptoms didn’t resolve by then, I would see an endocrinologist.

Grace: By the grace of God — yet again — I had a MRI done as part of a workup for migraines in 2007. The results were normal except for a partial empty sella, and that was the first clue that something physically may be wrong with me. The sella tursica is a bony cavity in our head, located at the base of the brain, and that contains the pituitary gland which is one of the most critical glands in our body. The pituitary is the endocrine system’s “Grand Central Station”; it sends out chemical signals that control the function of multiple glands such as the thyroid and adrenals. We each have two adrenal glands, one on top of each kidney. The adrenal is composed of two portions; the inside part, or medulla, makes adrenalin; the cortex, or outside portion produces many hormones, one of which is cortisol. If the cortex no longer produces cortisol, this creates a condition known as Addison’s Disease. It used to be fatal before steroids were invented — timing is everything! Good thing I wasn’t born 50 years earlier.

Lauren: My symptoms worsened, and I had been presumptuous in assuming that an endocrinologist could see me within four months. At that point, my husband and I both knew I wouldn’t make it that long. He moved a few mountain ranges and somehow got me in to see an endocrinologist within the week. I saw the doctor, was tested for everything imaginable the first day, returned the second day for an ACTH-stimulated cortisol test, and heard back from the doctor the following evening. Chronic adrenal failure. Addison’s disease. Impossible. It’s funny how I could know I was dying but never suspect I had a chronic disease.

Grace: My type 2 diabetes was not under great control, so in early 2009 I made an appointment to see an endocrinologist for the first time in my life. I took a copy of the MRI with me, and told him not only the information about my diabetes but also what had occurred 29 years earlier during the birth of my last child. I had a rare complication of pregnancy and suffered severe post-partum hemorrhage requiring about 15 units of blood. Because of this, my BP was critically low for the better part of a full day. When I was conscious I asked my nurse what was my systolic BP (top number)- with a hesitant voice she told me-40. Not good. Not good at all. Weeks later my OB doc told me this much hemorrhage can cause damage to the pituitary gland, because it was deprived of its own blood flow. After the MRI result, I began to wonder what had really happened to my pituitary-if it was functioning properly it should have taken up the entire space of the sella tursica. But my MRI showed an empty space where the pituitary should have been. What happened?

Lauren: As far as work issues, I had already put careers as an epidemiologist, journalist, and attorney behind me and had been happily at home for nearly 10 years when I was diagnosed with Addison’s. Consequently, I was fortunate to have no upheaval in my life concerning whether I could continue working. Life goes on pretty much as normal, even if normal is never the same again.

Grace: Summer of 2009 I was formally diagnosed with secondary Addison’s Disease and started on a lifetime of oral steroids to replace what my body no longer made. It was easier to replace the steroid than it was to repair my lost sense of self — I had always worked fulltime, with overtime. Sadly, I had once defined myself by my money making capacity and now was unable to work. Who was I, really?

Lauren: I am not so sanctified as to have no resentments. To name a few: my life depends on the stable production and distribution of a controlled substance, and on the continued existence of endocrinologists, and the necessity of living within driving distance of them. I become excessively indignant with people who push naturopathic remedies for Addison’s (there’s no such thing!) because they believe hydrocortisone must somehow be “hard on me.” But I have learned to simply respond, “When you say that, all I hear is ‘drop dead.'” Hydrocortisone replaces cortisol, nothing else does, and cortisol is necessary to life.

Grace: My last job was as a university hospital-based nurse case manager, primarily dealing with insurance and discharge planning issues. It had become extremely stressful during the past year, in no small part due to the recession and increased needs of the patients. As a nurse case manager, had been able to get doctors to do pretty much what I asked of them, including filling out forms and writing prescriptions as I instructed. Now I was (drum roll please) a patient. Roles reversed. I have to tell you-it sucks to be the patient . Now I have to plead with doctors to get my paperwork done, especially for disability. People tease me how ‘lucky’ I am to be able to stay home now. You have got to be kidding me — lucky? But maybe I am lucky — lucky to be diagnosed, to have a loving and supportive family. Lucky to not have been born before Dr. Addison figured out what this disease was. His wife had the disease, and it killed her.

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18 Comments
  1. Amanda permalink
    November 13, 2009 10:28 pm

    Hi my name is Amanda and I am from northwest Indiana. I am 27 years and was diagnosed with Addison’s disease 4 years ago. I am happy that you two could write about this disease because it is rare and it is hard to find information about it. When I was diagnosed my doctor pretty much told me that I was dying. For years my doctors I was misdiagnosed with a thyroid disorder. The thyroid basically masked the addison’s disease. Anyway, I had skin discoloration…I was tan and looked like I just got back from vacation. I also had quarter sized bald spots on my head which I was previously going to the dermatologist to get cortisone shots in my head. I had discoloration on gums, which I just thought I had gum disease. And I was tired and so weak. I am a softball player and I played in college. My senior year I was so weak that I could barely pitch the ball over the plate. My dad thought that I was one drugs but little did he know it was the addison’s. My memory also went downhill along with my grades. Anyway, I went to the dentist and he would not work on me until I got my gums checked out because they were so discolored. They were purple. He then referred me to a periodontist, and it was him to diagnosed me. He took a biopsy of my gum and sent it down to IU medical center because he orignally thought it was cancer but when it came back negative he was confused. He then called one of his old professors and together they diagnosed it. He told me that I would then need to go to an endocronologist.
    The endrocronologist of course did the proper blood work and it came back positive. I have Addison’s disease. For a long time I struggled with the fact, Why me? And trust me I still have those days but I’m living with it. Thanks for listening!

  2. November 14, 2009 7:51 am

    Amanda,

    Your comment is a real contribution to our post; thank you so much for writing about your trials and all the false leads you had to go through before getting diagnosed with Addison’s. It is sobering how easily the big stuff can be missed. Please feel free to contact me if you wish through the form on my Authoress page.

  3. Grace RN NJ permalink
    November 14, 2009 5:48 pm

    Amanda,

    Sorry it took your 4 years to get diagnosed and treated! It took me several decades to be diagnosed as progressive disabling fatique was my main symptom. I am 58 and was diagnosed July this year, have been on 3 different types of steroids now doing much better on Hydrocortisone (HC). Still not able to work as a nurse since Aug 24, 2009, but improvement is being made albeit at a slower rate than I’d like to see. Education is just as important as medication, and has saved me from some possible bad flareups or loss of control over the disease.

    This email/web based support group has been very helpful to learning how to manage my AD from others who completely understand what we are going thru: addisonsdisease@members.teleplexus.com. Good luck!

  4. November 17, 2009 7:28 pm

    We also live in the Pacific Northwest. My daughter was diagnosed with Addison’s at the age of 3 1/2, after she suffered a brain injury caused by an Addisonian crisis that she had while she slept. We woke up to a little girl hanging onto life by a thread. Her symptoms included the tanned skin, chronic dehydration when she caught any bug, stomach pain, salt craving…all the usual signs that the doctors were unable to diagnose.

    Managing her Addison’s, seizures (resulting from the brain injury) and other disabilities is very challenging. But with God, all things are possible, eh?

    Awareness about this disease needs to be a priority, no matter how “rare” it may be!

  5. aidan walsh permalink
    November 21, 2009 8:47 am

    i have been ill since june of 1990. over the years i have always responded to steroids from prednisone;prednisolone;cortef and florinef. each time over the years they try to take me off of these different meds i am on the edge of death.all this time i still do not have a proper diagnosis.i have had an abnormal tilt table test of 80/30 and a high pressure in spinal fluid that was 370 and neurologist said then it had to be 500.in 30 years he had never ever seen a higher pressure. i am now finally after all this time on 30 mgs. of hydrocortisone and take one+half of florinef daily.i feel i was much better on prednisone but am persiting with the hydro. they suspect it is addison’s either secondary/primary and now waiting on more tests.i truly feel i will die as my pulse and heart can no longer take these vicious attacks.for years now i have complained and only on deaf ears and each time i black out or rushed to emergency i am dismissed. i truly feel i could get more help from the parking lot attendent.if this is what i have been misdiagnosed with for almost 20 years isn’t anyone held accountable for this and who is going to compensate me for all the anguish.if it was not for myself searching on the web to atleast come to this illness. i can also say i know now that there are other members of my family who are ill with this and my brother is over 30 years without a proper diagnosis.i have nephews/neices who are suffering and i am sure that there was a child on my mom’s side who died very quick to what apeared an acute m.s. type illness? i may be wrong but i am almost convinced that i have not only one disease but two and i could be the adult x of my family tree.i am a positive person but i am very bitter and i feel medicine has really missed my families complete picture.personally i would love to hold the canadian govt. liable for all these years of misdiagnosis.i feel it is about time that these should be held fully accountable and sue for millions.their arrogance and denials have ruined peoples lives and stopped research into auto immune disorders.what is really going on is their cover ups of making old diseases new and until the real truth of these illnesses come to light we as a whole will keep on suffering and dieing. i have over the years spoken to numerous doctors and nurse who have lost everything to these illnesses and the majority can relate their onset close to a vaccine. i beleive that unless people as a whole rise together that they demand immediate answers to these living nightmares.i am sorry if i sound bitter but the things i have learnt over the years and seen is exactly what is going on and it is a major cover-up and a complete denial. sincerely aidan walsh southampton u.k.

  6. penny dahlheimer permalink
    December 4, 2009 9:37 am

    please help me!!!!!!!!!!! i’ve gone to the doctors for years. i have fibro & chronic fatigue but there is something else wrong with me.i noticed that if i would let my adrenals kick in that i would be sooooo tired. i have lead a very stressful life. i am now 50 years old & i can barely do a few household chores. i have alot of the symptoms that you have. i’m not tan but if i get a burn or a cut it turns a dark purple.i have the tiredness,dissy spells,intolerance to cold & heat, brain fog etc. i would like to know what one of your attacks are like.when i get one i feel like i’m going to die.i feel like i have no more energy to even breathe. my heart skips beats and i feel like a heavy weight is on my chest.that is how i know my spell is over because the pressure is gone.then my energy comes back. but i’m not getting much relief i am just always tired. i have gone to the hospital sooo many times for chest pain. the doctors have given me every heart test & the tests come back fine. please tell me what one of your attacks is like!!!!! i am so tired of going to the doctors i don’t go !!!! when i read your posts i feel like a weight has been lifted.not happy to have something but to know what i am dealing with.please write back!!!!!!

  7. December 4, 2009 10:14 am

    Penny,

    Deep breath. I can’t diagnose you. I would strongly urge you to find an endocrinologist through your primary care doctor. Get a doctor if you don’t have one. It is not possible to diagnose yourself for Addison’s disease, no matter what the similarity of your symptoms may be. It is not possible for any doctor to diagnose you accurately for Addison’s disease without blood testing, though a saliva test might possibly rule it out.

    Find a doctor and tell him clearly and calmly that you suspect you might have Addison’s disease, even though you know it is very rare. Explain your symptoms and the reasons you think this. Suggest or insist that an endocrinologist give you an ACTH-stimulated cortisol test. This is the classic diagnostic test for Addison’s disease. It measures whether or not your adrenals respond sufficiently to your pituitary signals.

    Please realize that symptoms differ from one person to another. Not everyone’s skin darkens in color. I never dreamed I had Addison’s disease when I was suffering my symptoms. Addison’s disease is the farthest thing from anybody’s mind, sometimes including a doctor’s.

    Please let us know how things go for you.

  8. penny dahlheimer permalink
    December 5, 2009 3:56 am

    thank you for responding so quickly!!!!i will go to the doctors and get the test done .i just get tired of going when they find nothing wrong and i still feel sooo bad. i know God has me in the palm of His hand.thank you for sharing your story and i will let you know what i find out. thanks again!

  9. aidan walsh permalink
    December 5, 2009 10:43 am

    penny, i am so sorry that you are suffering and my thoughts and prayers are with

    you. i truly wish a good endocrinologist can help you in finding out if you have

    addison’s disease. one thing for sure penny you are not crazy but very physically ill.i hope you are feeling better soon. my email is above and if at anytime i can try to help you please do not hesitate to contact me there. best wishes always penny, aidan…..

  10. December 5, 2009 10:54 am

    Aiden,

    Just to let you know…your email address does not come through to anyone but me, as blog administrator. If you both wish to email me through the contact form on my Authoress page that you’d like to share addresses, I’ll forward them.

  11. Anita permalink
    December 7, 2009 10:36 am

    I was diagnosed March of 2002. I was on the brink of death, hospitalized twice. BP 80/60 quit eating because I couldn’t eat and I couldn’t even stand up. My weight was 108. Finally a second opinion was brought in and I was diagnosed..Addison’s and Hypothyroid. I gained 40 lbs in ten months after starting my lifetime meds. I don’t feel sorry for myself because I could have died. I could have been diagnosed with something far worse. Oh I complain now and then of the struggle with weight, but remind myself it could have been worse. Addison’s is very liveable. Think of the alternatives.

  12. December 7, 2009 10:45 am

    Well said, Anita, and I’m so glad that you you seem on track with normal vitality. I don’t feel sorry for myself, either. I do feel some rue that life is sustained but not really hearty, but then — I do think of the alternatives — with considerable gratitude.

  13. Sheryl Conlan permalink
    February 5, 2010 2:11 pm

    Hi Lauren,

    I am 43 years old, live in Australia and I have just come home from hospital after being diagnosed with Addison’s disease. I am really a bit afraid of what is ahead of me. It was such a relief to find your site and correspond with people that are walking in my shoes. I too developed a dark tan and I was constantly tired, brain numb, lost weight and spent the last 6 days before my diagnosis close to fainting when ever I stood up. My doctor did a great job, suspecting Addison’s from my skin colour, discovering hypothyroidism along the way. Do many Addisons suffers also have hyperthyroidism as well? Can anyone show me some light at the end of the tunnel? I feel like I’m stoned at the moment, not sure if it is due to Addisons or the drugs?
    ( I’m on Prednisone 5mg and Florinef 100mcg, both once a day)

    Thanks again for the life line, I am happy for you to publish this email, I am open to all the correspondence I can get!

    Sheryl

    Sheryl

  14. February 5, 2010 3:17 pm

    Hi Sheryl,

    Thanks for writing. Your e-mail is not publicly visible here. WordPress only requests it so that the blog author, namely me, can notify you in case I have a question about your comment. But people may certainly choose to comment back to you here, so check back any time to see if they have.

    I’m guessing that your wooziness is the Addison’s, not your medication. The fatigue is pretty relentless even once the disease is so-called managed — at least it has been in my case.

    Did you know that your famous fellow Aussie, Helen Reddy, also has Addison’s? If you enter her name in the search box on my blog, a post will come up in which I link an article about her.

    I certainly wish the best for you, meaning a restoration of some sense of well-being.

    For a really heartwarming account of a child with Addison’s, see Annie’s blog in my links.

    Check in anytime and let me know how you’re doing.

  15. Paul Connell permalink
    September 27, 2010 1:37 am

    Hi All,

    No t sure im posting in the on the write part, but been looking for a site like this now for some time, im only 27 and was diagnosed 2 years ago with the addisons, it took them some time to find out what was wrong with me, i was having dizzy spells, couldnt eat would make me sick, i was 89kg before and within 6 weeks i hit 61kg and become very ill, after dizzy spells i was having full seizures 3-4 times a week, and still no one was closer, and my fear was growing quick, i had been signed off work for 9mths and stress was against me, whilst having other tests it was diagnosed i had type 2 diabeties out of the blue, then 2 weeks after i was diagnosed epilepsy followed by chrones, i was shocked to find all this out in one go but thought it was al my awnsers to how i was feeling, i was passed on to a diffrent surgeon, and aftr meeting him, i felt a diffrent persons, i could sense i was in good hands, 3 days after meeting him and having 2 days off tests he diagnosed me with addisons, but it didnt end there, i was told it had been detected to late and has already started the process of shutting my body down, hence the other illnesses, i can say i was confused and couldnt understand, but i was been told i had about 2 years left befor it would completly take over, i was told this is very rare and happens 2, 1 in 10,0000 people if that, my life has been a rollercoaster since, hospital visits twice a week, just as i learnt to come to grips with it and there wasnt much i could do, the addisons hit me again with cancer in the same kidney as the addisons, and there is no way they can touch it, i tried 2 lots of chemo and a radio therapy, with no out come, i was then told i only had 6-8 mths left, still coming to terms with it now, that was only 3 mths ago, my health is giving away fast, painfull to walk, memory loss, bed bound for days on end, ive been looking for sites like this for some time now, and so happy i found one to speak with people in my situation

  16. aidan walsh permalink
    September 27, 2010 8:38 am

    it is so sad for me to read these blogs and all these people suffering! i have been more fortunate lately as i am now able to get down to 5 mg of prednisone daily and the endocrinologist thinks maybe i may be able to come off all meds but he is not 100% sure of that! this is the first time i have been so low on meds in 20 years and i want to add this to all of you out there and just maybe it can help some of you! i started about 6 months ago with this site that was made by a doctor who discovered by accident while he was incarcerated in an iranian prison in tehran, iran!! he started treating prisoners with water and discovered its true benifits and he strongly believes from his observations and further 20 years of research in the united states that cancers and chronic illnesses were “chronic unintentional dehydration” and the nih/cdc tried to block his work because of the threat to the pharma industry and also the nih/cdc… he found out that all “hystamine” type drugs were actually pharma gimics working on the brains hydration areas! a question i have for all of you the next time you get a headache and reach for an aspirin/tylenol or pain pill! was it the medicine or the glass of water that resolved your headache… he also reccomends a high protein diet and the real “celtic sea salt” with the 90 minerals/vitamins! http://www.watercure.com http://www.watercure2.org i strongly feel this is now the reason why i am able to get down to such a low single daily dose of prednisone and i could possibly be heading to a complete recovery but as he has mentioned it does not and will not happen over night!! i only pray that this can help the lady that was mentioned on the blog who has been given only months to live with cancer! please all of you spend some serious time on these above sites and may god bless all of you just to be well!! sincerely in my prayers aidan walsh southampton!! BE WELL….

  17. March 12, 2013 1:17 pm

    Hi there,
    My name is Alyssa I’m 28 and I’m from CT. I was diagnosed with hypothyroidism at 18. Then diagnosed with Addison’s at 21. I went through all of the symptoms mentioned above. I am pretty much stable now although I don’t have the stamina others my age have. I still love my salt and sweet candy….which I’m trying to quit :) Sometimes I’ll wake up feeling week and having nausea but I take an extra fludrocortisone and I feel better. My husband and I are planning on trying for a baby within the next 6 months. I definitely have concerns but I know if its meant to be it will be. Has anyone had experience with pregnancy and Addison’s disease?

  18. March 12, 2013 1:28 pm

    I’m sure there are many out there who have–I’d suggest doing a Google search for Pregnancy and Addison’s disease, as well as conferring with your endocrinologist.

    God bless you, Alyssa!

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