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Never considered Cushing’s before now

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This topic contains 5 replies, has 2 voices, and was last updated by  Leslie Edwin 1 month, 1 week ago.

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  • #6522

    Delilah1990
    Participant

    I started having symptoms in 2013 at age 22. I was gaining weight rapidly. Prior to this I was a recreational distance runner and averaged around 40 miles per week. Weighed 125 pounds at 5’7. I had experienced a few musculoskeletal injuries that forced me to stop running and had recently been put on antidepressants, which I blamed for the weight gain. I gained about 30 pounds in the first year, and now, at 28, I weigh a full 110 pounds more than I did at 22. I deal with a lot of fatigue, chronic lower back pain with neurogenic claudication (nerve pain in legs when walking), chronic neck pain, muscle spasms in neck and upper back (trapezius and rhomboids), and ribs that constantly need to be popped and cracked (feels like they are irritating nerves if I don’t adjust them), and severe depression. I have been on short-term disability twice in the past year, once due to depression, and the second time due to chronic back pain. My boss hates me. Before now, the only abnormal blood tests I have had showed low vitamin D, low total iron, very high fasting insulin (with normal HbA1C), and high testosterone. All other reproductive hormones were normal, I have regular periods and do not have cysts on my ovaries, which suggests that I do not have PCOS. My primary doctor thinks I have CFS or Fibromyalgia. I recently got the results of a salivary cortisol test (from Quest Diagnostics). It was just one test that I took in the morning and my results were very high. The reference range is 0.04-0.56 mcg/dL. My results were 8.35 mcg/dL. Normally I am not one to freak out over blood work. Suboptimal labs, while usually a sign of suboptimal health, do not necessarily equate with disease. However, my results are nearly 16x the upper limit. Unless someone in the lab made a big mistake, something is definitely going on. I don’t think I look like a typical Cushing’s patient. My face is not particularly round, but I do have a fairly long face to begin with. I only have a slight buffalo hump, and I was told it was postural. There is a bit of fat on my upper back, but I’ve always thought it was a normal amount of fat for my weight. My arms and legs are not what I would call “skinny.” I have definitely put on weight in those areas, but then again, it would be hard to gain as much weight as I have and not gain something in those areas. I would say my abdomen is slightly large compared to the rest of my body. It has gotten to the point where it does sort of “hang down” a little. I have stretch marks behind my knees, on the back of my thighs, inner thighs/groin, belly, hips/lower back, breasts, and upper arms. The stretch marks around the inner thigh/groin and trunk are the most noticeable and are very dark purplish/brown in color. The rest have faded to a color slightly lighter than my natural skin tone. My doctor is taking forever to get back to me about this, and I’m not sure if I need to find an endocrinologist or not. I’m in the middle of trying to find a new job because I am physically unable to do my current job and my boss hates me, as stated above, but I’m afraid to make any decisions because I may not have good health insurance until my new benefits go into effect. Wondering what other people’s salivary cortisol results were. From what I’ve read online so far, people are getting diagnosed with results “only” 4-5x the upper limit, which doesn’t look great for me, as mine are much higher.

    #6532

    Leslie Edwin
    Keymaster

    Hi again, I should have read your first post before commenting on the second one. Maybe I’m missing something, but the salivary cortisol test usually used for Cushing’s is the “midnight salivary”, taken between 11p-12a depending on the advice of the doctor. I found this snippet on our website:

    ———-
    Late-Night Salivary Cortisol

    Late-night salivary cortisol is one of the most sensitive diagnostic tests for Cushing’s syndrome. Elevated cortisol between 11:00 p.m. and midnight appears to be the earliest detectable abnormality in many patients with this disorder. Cortisol secretion is usually very low at this time of the day, but in patients with Cushing’s syndrome, the value is usually elevated. It is the most widely studied single test for the diagnosis of Cushing’s syndrome with many studies from all over the world demonstrating a sensitivity of 93-100% for the diagnosis of Cushing’s syndrome; however, like all the tests for Cushing’s syndrome there are many things which may cause a false positive result and additional testing is always needed.
    ———-

    I was unsuccessful in my attempt to find information about a single morning salivary cortisol test in relation to testing for hypercortisolism. If this wasn’t an endocrinologist who ordered the test, you probably do need to get in to see one who is knowledgeable about Cushing’s. If it was an endo, you probably need to ask them why they didn’t order a midnight salivary!

    Please, please be careful about taking patient-reported recommendations and testing protocols online as scientifically-sound. Most are, some aren’t, but they’re all reported with the same passion.

    The standard tests that should be ordered when hypercortisolism is suspected are a 24 hour urine, the midnight saliva, and the dexamethasone suppression test. Some will get an 8am blood cortisol but that’s not considered very accurate. If testing is inconclusive or any sort of wait is required between testing, it is a great idea to do a sleep study to rule out sleep apnea and to look at any lifestyle changes that could possibly be made – because a lot of things can cause temporary, intermittent, or persistent hypercortisolism that will lead to Cusihngoid features but are not caused by a tumor. We have a patient story from several years ago about a woman who suspected Cushing’s but discovered that sleep apnea was causing elevated cortisol all night to the point that it was creating “Cushing’s” symptoms. She started using the CPAP and all symptoms resolved and she is thriving now. I suspect that some people might feel that this suggestion is accusatory; it is not. Addressing and discrediting these “side sources” makes the diagnostic process easier when it’s not a 100% florid / overt case, because sooner or later a knowledgeable doctor might ask you to do them anyway.

    Please feel free to e-mail me at [email protected] if you’d like to continue the discussion! I hope you get on the right track to figuring out what’s going on soon.

    #6542

    Delilah1990
    Participant

    Hi! Sorry I double posted. There was a long delay before my post so I thought it was lost. My doctor thought she ordered 4 tests at 4 different times but either she or the lab messed up and gave me only 1 tube. I contacted the office to see what time I should take it and they said 9 am without asking my doctor. Another reason she didn’t just order the late-night/ midnight cortisol was that she actually expected the result to be low, because that it was is normally seen in CFS. Cushing’s wasn’t something we even talked about. I had an appointment today with an endocrinologist and she ordered two late-night cortisol tests, 24-hour urine and dexamethasone suppression test with ACTH. I’m following up in 3 weeks but will have my results sooner, so I will have some idea of what’s going on before that. She said if it comes back negative we will test a couple more times a few months apart to be sure.

    #6551

    Leslie Edwin
    Keymaster

    I hate that lab orders are frequently messed up for cortisol testing. Sorry to hear that first attempt was messed up.

    The testing schedule sounds in line with accepted standards, and it’s good that she’s already talking about following up in case of negative or inconclusive results.

    Good luck!

    #6544

    Delilah1990
    Participant

    Also, I have never had a sleep test in a clinic, but I did do one at home with a little machine from my doctor. Everything was normal. Thanks!

    #6553

    Leslie Edwin
    Keymaster

    Make sure the sleep machine study is on record with your endo if that’s not the doctor that ordered it. Will be good to have one more thing to rule out if it comes to it.

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