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Not quite diagnosed.

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This topic contains 2 replies, has 3 voices, and was last updated by  shortygirl 1 year, 1 month ago.

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    I’m Nicci and I am a 51 year old woman from coastal Oregon. I live in a rural county and sometimes things take time.
    I moved here a year ago and when I finally got set up at a clinic and they did their periodic bloodwork I was dehydrated – they told me I had kidney disease (I did not) but when I had lower right flank pain I went to the ER because kidney disease scares the %$#! out of me. They did a CT and told me they did not find anything specific. I went a month later for my mammogram and when I asked for my mammo report (I keep these for my own records) they gave me the doctor’s version of the CT report – which was a little surprising. Remember I was there for lower right flank pain? One of many things noted in the report was “A non-specific 1.4cm adrenal adenoma”. In my mind this should have been reported to me but hey I’m just the patient right?
    I started looking up what could happen with this tumor and found that its likely not cancerous (yay!) and found Cushing’s Syndrome. I looked at the symptoms, and the stories. I found a lot of common stuff.
    Once upon a time, I was a healthy happy 30 year old, married with two step-kids. Then I got sick. A lot of non-specific stuff like extreme fatique, odd pains, particularly in my hands, and in 6 short weeks gained 50lbs. Along with this was a lot of emotional distress and depression. A myriad of antidepressants and painkillers prescribed made the psychological stuff worse and none the physical stuff better.
    Over the years I have been diagnosed with or tested for, Epstein-Barr, Lupus, Lyme Disease, Chronic Fatigue Syndrome, refractory insomnia, refractory type 2 diabetes, panic disorder,  major depression, bipolar disorder, and even schizophrenia (pump enough psychmeds to an otherwise healthy brain and guess what?)
    Of particular concern is the diabetes and this is also the most frustrating. I can do the same things, diet and exercise wise, keep hydrated (for the last several months I have drank 3+ litres a day). I do not drink alcohol, eat like a bird, and be severely hypoglycemic one day and have numbers in the stratosphere the next. Until recently, doctors have waggled their fingers at me and made me feel like it was all my fault.
    One time, after surgery, while still in the hospital my sugar was sky high and the doctor asked me to explain it (I’m not a doctor sheesh) and I told him, you guys control my food and meds, you tell ME why it’s high!.

    So fast-forward back to now: Despite losing 65lb I still feel tired and crappy most of the time. If I don’t nap I do not get enough sleep because I cannot stay asleep at night and it can take hours to get to sleep – even with sleep meds. I feel keyed up most of the time, which has been brushed off as part of PTSD (that’s real)
    I can lose 20lb and have no change in abdominal fat but my limbs are very skinny. I don’t bruise easily but I cut easily and it takes forever to heal.

    Taking all of this into account I would have no clue what’s wrong and doctor’s haven’t either. Accidentally finding the adenoma last spring and doing my research had led me to believe that I have Cushing’s and my primary care provider believes this might be the case too. Unfortunately she is out until next month having a heart valve repaired. Sigh.

    I don’t believe there is an panacea here, but, having answers perhaps for the first time,  combined with a tangible reason that might be the cause gives me a bit of hope.
    I don’t believe that 20 years of poor health due to untreated Cushing’s will be completely reversed but I have hope I might one day feel somewhat better.

    After all of this I don’t trust verbatim what doctors tell me and have lots of examples where they blow me off when I tell them what I think is wrong. With the new clinic I explained that I am very intelligent (I used to be an automation and aerospace engineer) and able to understand medical reports and documents and that I want to work in partnership with my care providers – so far this has paid off.

    So this is a long-winded way of saying Hello 🙂



    I would recommend seeing an endocrinologist.  Also, there is a Mayo clinic in Arizona and I saw that UCLA has a Cushing’s disease specialty department.



    Hi Nicci.  You’re very close to Seattle, Washington which is great for you!  Look up “Swedish Medical Center”.  They are one of the top Cushing’s ‘experts’ in the country!

    Last night I watched a re-run of ‘Mystery Diagnosis’ where one woman’s quest for diagnosis was featured.  Her name is Sharmyn McGraw.  If you google her name, you should be able to see the segment.  She became a very strong advocate for Cushing’s awareness and worked with UCLA which nytrdr mentioned.

    Best wishes on your recovery!


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