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How do I get a diagnosis?

Home Forums Public How do I get a diagnosis?

This topic contains 7 replies, has 7 voices, and was last updated by  DaniB027 2 years, 5 months ago.

Viewing 8 posts - 1 through 8 (of 8 total)
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  • #2718

    kkc
    Keymaster

    I was diagnosed by accident when my doctor ordered a CT scan for other reasons. That’s when they found my adrenal problems. My doctor thinks he could have diagnosed me sooner if I’d shown him my pictures. So, pictures showing your change in appearance are worth a 1000 words!

    • This topic was modified 3 years, 6 months ago by  kkc.
    • This topic was modified 3 years, 6 months ago by  kkc.
    #3401

    adnarim210
    Participant

    I wish getting diagnosed was easier since I been to about 8 endocrinologists in the span of 4 year.

    #3420

    Bradcole1827
    Participant

    Can you expand on your experience? Apparently you have some atypical test results. I’m in a similar boat, but have not been at it as long as you. My endocrinologist is scratching her head too. I’ve had a dexamethasone suppression test that was double normal.  Then I had an am and pm saliva test that were both normal.  Then I had a 24hr urine test that was 4.5 x normal.  So my endocrinologist ordered up a MRI of my pituitary and a CT scan of my adrenal glands and those were both normal – no tumors.  I’m frustrated because I have some of the common symptoms, but not all:  Fatigue, weakness, anxiety, depression, over-sweating, recent hypertension, weight gain and some more, but not the red marks, bruising, or buffalo hump.  With the 2 obvious tumors ruled out, I’m frankly pretty anxious (imagine that) about ectopic tumors, especially CRH or ACTH-producing small cell lung cancer.  Because  you have stumped 8 endocrinologist, I wondered if you would share what has caused your diagnosis to be difficult?  Perhaps they’ve figured it out since your post – that would be great to hear as well.   I appreciate anything you (or anyone else)  is willing to share about difficult diagnoses. </span>

    #3728

    ashleynw
    Participant

    Wow, that is exactly what I’m fearing is going to happen. I’m just now getting to a point where they are doing the dexamethasone one night test. But I smoke like a chimney smoke and I’m just hoping this test confirms and we can get on the road to treating me. I’m so scared of the back and forth for more test and more tests.

    My weight gain is so uncomfortable,  I was 115 in July and I’m now 150 in just those few months. It’s crazy, I feel pregnant. lol

    My fatigue and anxiety are horrible as well.  Thank you for the tip because my doctor doesn’t seem to be wholeheartedly looking at my symptoms, I’m only 28 she says, like what?

    #3740

    jbgirl874
    Participant

    I have several of the symptoms of Cushings including the “buffalo bump”, but my cortisol blood test was normal. Could I have Cushings and a normal cortisol blood test? My Dr. told me ” lose weight and you’ll feel better”. I would really APPRECIATE any response. Even if someone can just point me in the right direction!! Thanks

    #3745

    kkc
    Keymaster
    If you are struggling to get a diagnosis, please visit the pre-diagnosis section of our website. On that page, there is a link to information about Testing. Take the time to understand the testing process so you can make sure that you are adequately tested. There is also a link to the Endocrine Society Guideline that may be of interest to your doctor. Cyclic Cushing’s can be difficult to diagnose as the tests won’t show positive sometimes. If the index of suspicion is high, you should continue to be tested. Some have found it useful to track their symptoms and there is an on-line tool to do that. The idea is that tracking may help you determine if you are high or low and testing needs to be done when cortisol is high.

     

    #3792

    Dennis
    Participant

    I see that bradcole 1827 has discounted a pituitary tumour because it wasn’t picked up on the MRI. The pituitary tumour may be too small to be picked up. This happens in a lot of cases, myself included

    #3803

    DaniB027
    Participant

    I’m going through this right now.  I first went to the Endo two years ago, but he wasn’t concerned and said to keep an eye on my thyroid since I have a family history.  Since then I have continued to gain weight (almost 100lbs in the past two years), severe fatigue that is interfering with college, anxiety, depression, headaches, stretch marks, moon face and bruises that appear out of nowhere.  We finally got another Endo in town so I went to her and she had me run more tests.  We did the 24 hr urine and saliva cortisol.  My next appointment isn’t until Jan 6th so I’m just hoping and praying they can finally give me a diagnosis.  I did take some photos with me and she was able to see the changed in my face clearly.  She told me to be patient since Cushings can be difficult to diagnose.

    If my tests come back normal would it be worth it to get an MRI?

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