Addison's misdiagnosed as mental illness

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for 20 years I was diagnosed with mental health issues. I was in and out of hospital and given medication after medication. Nothing worked because it wasn't a mental health issue!!!  Because not one doctor really took time to ask and listen, I was medicated, tucked away in hospital and missing out on life. Now that the diagnosis has been delivered and I'm under a very competent internist's care, everything is finally falling into place!  Has anyone had a similar experience?

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16 Replies

  • Posted

    my son has low cortisol and am looking into getting more tests for this , thats such a shame, was it your cortisol they tested to get a diagnosis
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    • Posted

      I ended up in hospital. I was on my second weekend of what I thought was the flu. I was vomiting, had diarrhea and a lot of pain in my stomach between my ribs radiating to my left side. Turns out my liver and spleen were enlarged (spleen still is but that could be 'my' normal). What lead to this was a refferal to an internist. She took 19 viles of blood for tests. She looked for EVERYTHING. She was beyond amazing with her thoroughness. She found a few things that lead to her administering a cosyntropin injection. This confirmed her suspicion of secondary adrenal insufficiency. I almost wanted her to say no to my question of my being misdiagnosed for all those years but unfortunately, she nodded with a look of empathy. I've since found studies that indicate that many have been cheated out of years due to misdiagnosis of mental illness instead of Addison's.
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    • Posted

      Before or after test?  Actually, come to think of it, I'm not sure about the one after. 
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    • Posted

      I am just looking through my test results and I can't find it on the sheet she gave me. My tryptase is 18.7 and the norm is between 3.8-11.4 (she is sending me to an immunologist to rule out mastocytosis. My alpha 2 is a bit lower than it should be. Beta is the same. My IGA is at a 0.4 and the norm is 0.8-5.0.   My spleen is still enlarged but that size might just be MY normal (according to what they've said). I'm at the point where I'm so tired that I just wait for her to tell me what to do (meds and advice) and do little else. I used to be the one to research everything and ask a bunch of questions but it's just too energy consuming at this point. I'm pretty much invested in trying to read my symptoms. Sorry I could tell you what you were asking. 😔
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    • Posted

      I have Primary Addison's, autoimmune since 1993.

      I had the same problem when I was in the hospital late 2008. I had sever leg and body pain. They couldn't figure it out and they thought it was all in my head!

      Now I find out I also have EDS hypermobiliy. That's what the sever pain episode was all about. You have to remember something, if you have one autoimmune, keep you eyes open for another!

      I first had Graves' disease and had 90% of my thyroid removed in 1975. Then Addison's in 1993.

      And the EDS is a defective gene, not autoimmune.

      I telling you this because I put a lot of the issues down to long term use of hydrocortisone.

      Question: What is your secondary Addison's due too?

      Darlene

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  • Posted

    Yes, sadly I have.

    Not being believed by medical professionals who are supposed to care for you but don't is heartbreaking and terrifying.

    Like you seventeen years from first symptoms and only just getting diagnosis.

    In that time having yearly brain operations and untreated addisonian crisis after crisis.

    We should congratulate ourselves for just surviving.

    The worst for me was being in crisis knowing I was not imagining it and not being able to verbalise it to anyone(because I was in crisis!)

    The only way I survived physically is that my body would crash so rapidly that they would give me an iv of saline...inadvertently giving me salt I needed.

    Why did yours go undetected?

    In my case it was because cortisol is 'normal' only aldosterone and renin are low...extremely rare.....even my specialist did not believe me...I had to present a case.... like being in court!

    I am glad you're through that now.

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    • Posted

      Mine went undetected because they didn't even bother doing blood work at any point. They even missed Epstein bar at one point. It came up as dormant when my internist did all the testing. I've just been tired for the most part of my life, getting everything that was going around like colds and flus, medicated with heavy psych meds and considered lazy although I kept pushing myself to the point of collapsing. They just didn't think of doing anything other than medicating. 

      Youre right though...we are survivors!  I just have to be careful not to dwell on what could have been had they found it. I'm a teacher by trade but had to give that up. I didn't have the energy to invest in a relationship and because of being on disability all those years (basically pushed in to it because I was always in hospital) I am in debt and I'm constantly struggling financially. I lost ten solid years with my daughter because I was so heavily sedated and 'lost' all the time that I couldn't raise her. I live in a small town so everyone talks. I've been labelled as 'the little mental case who couldn't even raise her own child'. I am extremely resentful some days but briefly because I can't afford to dwell on it. 

      After all those years of having our lives on pause, we are finally able to exhale. I had somehow found a way to push through, get my daughter back and start working part time and get off disability. I think that is pride more than anything else and my internist doesn't know how I did this or where I found the energy but I did. 

      Pother people have it worse than me and I'm very grateful for what I have now. That is what keeps me going!  This doesn't change anything other than my possibly being able to live a normal life as soon as I get to read the symptoms right. I'm happy I feel even remotely better. I'll take that!!!  😊

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    • Posted

      I didn't know someone could suffer from only low aldosterone.

      Thanks for the post!

      I have Addison's, and Graves, but my granddaughter who is 23, was diagnosed with Hashimoto, under active 5 years ago. She now is showing signs of low Adrenal function.

      Thanks again, we will investigate in this direction.

      Darlene

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    • Posted

      Hello!  I found your post by chance.  My daughter has only low aldosterone and renin.  We are seeing an endocrinologist in a week.  How are you treating your low aldosterone?  Any advice is welcomed.  I am so scared of this.
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    • Posted

      I also have low aldosterone and renin. Cortisol at base is within range but on the low side. However, my cortisol does not respond to the stress tests. 

      Years of maltreatment, misdiagnosis, a bit of labeling and physical misery. I take fludrocort daily and cortef as needed. Infrequent small doses and larger ones for surgery and illness. I'm maintaining now but missed a lot of important things in life. Now I am old. Just maintaining is all I hope for at this point. At 75, maintaining is a good thing...not a complaint.

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    • Posted

      Wow I have only just joined this site , I have been diagnosed with Addison's on 23 October  2016 I take hydro and fludro. Sorry not sure if aloud to use names . And nor sure what I have I was just told I have Addison's and given the tablets and told to have a look on the internet . Its been nearly two months and still maverick so many gquestions and no answers . I just wanted to say your a very lovely person . Thank you for your posts all of you . Not sure if I've done this right only just started internet have no idea what I'm doing half the time . 

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  • Posted

    I just had to reply, ex GP has had me disembodied with munchimers

    Disease, even possible personality disorder. We are working to have

    These reports removed from my medicinal records. All these "crazy"

    Things I supposedly have were diagnosis in my hosptial room within

    20 to 30 mins. So I understand, he (doctor) never listened,dismissed

    Lab reports.although I was not hospitalized for mental illness,

    (probably only because I had several people from church watching

    every step he took) my heart goes out to you. We or I was just diagnosed

    This last week. We are trying to find an attorney to file failure to diagnose,

    Failure to diagnose & misdiagnosed against him. Keep me posted.

    Thank you you made me feel less alone. Kim

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  • Posted

    I have been diagnosed with PTSD and I do believe that that is the trigger to the HPA  dysfunction for my low cortisol levels I am now pushing to make sure I do not have addisons and to see whether anything else could be causing the cortisol levels that I am experiencing. PTSD was the first diagnosis when I basically broke down at work and said I could not do it anymore - death threats, restructuring, massive disasters, a terrorist attack that I aurally witnessed and 7 colleagues killed and my extended family live in nephew dies from cancer aged three - so there was reasonable validity to accepting PTSD as my only diagnosis and the diagnosis and treatment manual do not mention HPA axis or cortisol levels - but the research does and atribute much of the PTSD symptomology to the hormonal/chemical imbalance caused by the HPA dysfunction - even this all being out there and accepted - becuase it is not in the treatement manual - none even bothers to look. So how much talk therapy can help a chemical imbalance. Any research that is being done on endicronological treatment is being linked with therapy as the psychs do not want to let go of their cash cow. There is a deal of caution as nobody understands the complex cause of the trigger for the HPA dysfunction . Bloody hell this is ridiculous just ask everyone who has confirmed PTSD to be tested for HPA axis dysfunction and primary/secondary insufficiency and you will start to get a picture - and take the ball out of the psychs court - once you have a mental illness diagnosed all biological considerations go out the window until you have biological collapse . My mum had a delirium episode was cleared medically and then put in a psych ward - she collapsed after a CT scan and was intubated ( against her health directive wishes) and then got put back into a medical ward for further investigations - if she had died in the mental ward there would have been a royal commission as to why she was in there!  So you need to Dr shop a bit and look for alternate or underlying biological causes for mental health issues. Mania goes along with PTSD sometimes and I have had Drs suggest I need to stay away from the internet even though I have evidence of my HPA dysfunction - now I have someone willing to test for the causes but even then I may not get any treatment because my causal diagnosis is PTSD. So frustrating - feel like just jumping to the imaging as I can order all tests without a DR's support where I live but I am happy if someone tells me there is actually no need. What I am finding is there is no need there is just no practice of doing it with people who have mental ill health as a causal diagnosis

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    • Posted

      I have been diagnosed with PTSD and I do believe that that is the trigger to the HPA  dysfunction for my low cortisol levels I am now pushing to make sure I do not have addisons and to see whether anything else could be causing the cortisol levels that I am experiencing. PTSD was the first diagnosis when I basically broke down at work and said I could not do it anymore - death threats, restructuring, massive disasters, a terrorist attack that I aurally witnessed and 7 colleagues killed and my extended family live in nephew dies from cancer aged three - so there was reasonable validity to accepting PTSD as my only diagnosis and the diagnosis and treatment manual do not mention HPA axis or cortisol levels - but the research does and atribute much of the PTSD symptomology to the hormonal/chemical imbalance caused by the HPA dysfunction - even this all being out there and accepted - becuase it is not in the treatement manual - none even bothers to look. So how much talk therapy can help a chemical imbalance. Any research that is being done on endicronological treatment is being linked with therapy as the psychs do not want to let go of their cash cow. There is a deal of caution as nobody understands the complex cause of the trigger for the HPA dysfunction . Bloody hell this is ridiculous just ask everyone who has confirmed PTSD to be tested for HPA axis dysfunction and primary/secondary insufficiency and you will start to get a picture - and take the ball out of the psychs court - once you have a mental illness diagnosed all biological considerations go out the window until you have biological collapse . My mum had a delirium episode was cleared medically and then put in a psych ward - she collapsed after a CT scan and was intubated ( against her health directive wishes) and then got put back into a medical ward for further investigations - if she had died in the mental ward there would have been a royal commission as to why she was in there!  So you need to Dr shop a bit and look for alternate or underlying biological causes for mental health issues. Mania goes along with PTSD sometimes and I have had Drs suggest I need to stay away from the internet even though I have evidence of my HPA dysfunction - now I have someone willing to test for the causes but even then I may not get any treatment because my causal diagnosis is PTSD. So frustrating - feel like just jumping to the imaging as I can order all tests without a DR's support where I live but I am happy if someone tells me there is actually no need. What I am finding is there is need there is just no practice of doing it with people who have mental ill health as a causal diagnosis

      Report

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