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  • Borderline Addison's With High Cortisol?

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    Old 08-13-2008, 02:09 PM   #1
    seajay
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    Borderline Addison's With High Cortisol?

    Well, with the results of my saliva test showing very high cortisol, this seems to be a little puzzling. I posted before that the low dose suppression test was administered. The Nurse Practioner said I suppressed, barely. Since my blood pressure always registers on the low side, could this be why they are swaying towards Addison's? She said that my adrenals are exhausted and if I had waited much longer, it would have put them into failure. I have read many things about cortisol and it seems high cortisol levels indicate Cushings.

    I'm beginning to realize how totally foreign this may be to a General Practioner and that diagnosing which disorder goes with the cortisol levels throws many curves. She told me that she had not seen a saliva test come back with such high cortisol levels. She indicated that my morning level was nearly off the chart. I am being treated now with Adrenal Support and Cortico B and some other meds. She will run the saliva test again after I have completed this round of homeopathics. (Which my insurance doesn't recognize and won't cover.)

    Has anyone had good results with this type of treatment? I was informed that it will take a good 3 months to get my adrenals to a semi-normal function. But, yes, I know I'm pushing it as it's only been a week, but I seem to be declining. I thought at least I wouldn't decline and that things would go on the same, eventually leading to an upswing.

    Last edited by seajay; 08-13-2008 at 02:21 PM.

     
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    Old 08-14-2008, 07:10 AM   #2
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    Re: Borderline Addison's With High Cortisol?

    This means.... cyclical cushing's. You will go up and down - feeling good when the cortisol is high and like horrors when the cortisol is low as the pain is immense.
    I had it. It was awful. You need an endo who can test and treat it.
    I had this and it took me 12 years - I am now disabled. My tests were all over the place high low normal and the doctors did not look at me but decided that the normal tests trumped all the abnormal ones and let my body go to heck. I will pay that price the rest of my life.

    Do research, get copies of everything and learn. Your health depends on it.

     
    Old 08-17-2008, 09:03 AM   #3
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    Re: Borderline Addison's With High Cortisol?

    Thank you for your reply. Are you disabled because of the damage the high cortisol has done to your joints and muscles? If so, it doesn't seem that the health care providers take this stuff seriously enough.

    I get frequent pains in my thighs, which seems odd, for muscles in the tops of the thighs to cause pain. I also get pain below my right rib cage. The adrenals are located at the top of the kidneys so I asked my NP if they could be the cause because occasionally, the left side hurts also. The right side pain wakes me up at night and so does the thigh muscle pain. She ordered a CT scan of the torso, but my insurance is pitching a fit and wants a peer review. Again, I balk at the fact that the insurance providers can dictate to the health providers how to proceed with treatment. Not that I'm predicting doom and gloom, but I guess a dead patient is more cost effective than a live one with health problems. The shareholders have to see profits, so I'm sorry dear, you can't have a CT scan to find the source of your pain.

    I've read so much about the long term effects of high cortisol, I wish the insurance companies would research health conditions too.

    (I had to vent a bit...sorry :{ )

     
    Old 08-17-2008, 11:33 AM   #4
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    Re: Borderline Addison's With High Cortisol?

    As soon as a doc saw a normal test, it was as if all the abnormal tests disappeared even though if they had looked up and looked at ME, which believe me I asked them to do, my symptoms were all still there and progressively getting worse. Lab tests trumped real life. No curiosity, no time, no desire to help. A few docs did try but most did not.
    In actuality, I would have cost an insurance company much less had I had surgery in 1992, as I would have probably been cured easily and not been sick all these years. Now, I have had 12 operations, and now I cannot work, probably ever again. How, pray tell, did that save anyone money?

     
    Old 08-26-2008, 03:41 PM   #5
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    Re: Borderline Addison's With High Cortisol?

    Hello Rumpled again,

    I have a question. Besides the Suppression test, before you were diagnosed, did they ever do CT scans of your head or abdomen? I understand that Cushing's is difficult to diagnose, but it seems that they would have run some sort of imaging to be sure. And if they did, were the tumors too small to detect? Besides joint and muscle pain, did you have localized pain below your ribs where the adrenals are located?

    With the elevated cortisol and testosterone levels, I am left with a lot of questions. I have been reading more and have found that the syndrome detiorates your bone mass and can lead to curvature of the spine. The scoloiosis in my lumbar spine is not too alarming, as my family has many back issues. However, scoliosis of the cervical spine is rare, and the last radiology report from my neck x-ray 2 months ago, says I have it. This is an indication that the cortisol is breaking down bone quickly because I did not have it one year prior.

    They have ordered a CT scan of my abdomen and pelvis and it finally got approved by my insurance, though it took an act of congress. Does the radiologist need to be looking specifically at the adrenals to see anything? These glands are so small, and as I understand, so are the tumors if there are any. Hopefully all is well, and the pains are linked to the fibromialga caused by the cortisol.

    The homeopathics I'm taking are giving me energy, but aren't eleminating the sweats, extreme moods, muscle and joint aches. Plus, I look more like a zombi now than before. Mornings are quite difficult.

    Last edited by seajay; 08-26-2008 at 03:46 PM.

     
    Old 08-27-2008, 07:50 AM   #6
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    Re: Borderline Addison's With High Cortisol?

    I had MRIs and CTs of my abdomen - ironically all normal! When I had surgery, however, those puppies were HUGE. They were at least 2x normal size and one was nodular. So, all the imaging missed out - even the one the day before surgery. But no matter, the CT the month AFTER surgery still told me my adrenals were normal. Yes, so they are fine, even after they are gone... [yes, I did complain and had them re-read my films to which I got a snotty the left is gone but the right has residual tissue perhaps but my labwork shows no tissue is left at all].

    The cortisol eats bone - all over. Make sure you are taking lots of calcium and lots of vitamin D - lots and lots of D. D3. The pain is caused by the cortisl coming and going....

    I hate to tell you but the pain will get worse so prepare yourself - after surgery, when you wean off the medication - it feels as if someone has taken a bat to your body. I could hardly go up stairs. It was miserable and then you turn a corner and it stops. It does end - but it feels as if it is will never end. They say it is like a heroin withdrawal. I never took heroin but it was terrible.

    Just be patient with yourself. All the aches etc. are the disease.

     
    Old 09-01-2008, 07:47 PM   #7
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    Re: Borderline Addison's With High Cortisol?

    Rumpled,

    That's not so funny about the radiologists seeing your adrenals after they had been removed. Umm, that gives me so much faith. I was looking at a radiology report from a CT scan of my lungs. It said my adrenals were normal size, something tells me that they have been causing issues for some time. I had been complaining to my Pulmonlogist of pains below my ribcage, and he just shrugged so many times. I had Pleural effusions in my lungs, and at first, he blamed the pain on them. But, when the effusions were absorbed into my body, he was puzzled that I was still having pain.

    My NP wanted me to complete this round of homeopathics. But, my husband has a friend who is an ocular surgeon. Though he is an eye doc, he still has an MD and he told me high cortisol is nothing to mess with, that I should forgoe the NP and get to an Endocrinologist. My cousin, who I'm very close to lives in Northern California and one of her close friends is an Infectious Disease Doctor, she said the same thing. Both are puzzled at the Addison's conclusion given that Addison's causes low cortisol and are concerned that the Homeopathics may be pushing the hormones the wrong way. Soo, I have been offered a referral by both. I'm taking one up on it so I can get to a doctor that handles these issues.

    Thank you Rumpled for alerting me. I know that I can't diagnose myself with the condition, but I can gather information and make decisions to be more assertive with my healthcare.

     
    Old 09-01-2008, 08:23 PM   #8
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    Re: Borderline Addison's With High Cortisol?

    Hi Seajay

    Just popping in on this thread to see how you're doing. I'm glad to read that your scan has finally been approved! I'm glad for you too, that you will get in to see an Endocrinologist. I hope you won't have too long a wait and that you'll get some answers.

    I'm off on holidays for a bit, but I'll check in when I get home and see how things are going for you. I'll be thinking of ya!

    Take care. Murphy

     
    Old 09-02-2008, 11:41 AM   #9
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    Re: Borderline Addison's With High Cortisol?

    Yes, you do need an endocrinologist. Preferably neuro-endocrinologist.
    There are lots of good ones in CA. Look in LA, SF at the large centers for a pituitary center at a university. Blevins I think is out there as well as Friedman, and they guys in San Fran are highly rated.
    I traveled to LA to get treatment from NJ!
    Cortisol in a normal body goes up and down - why docs forget that I have no idea... they have to look at the entire picture. Lots and lots of tests - no one or two will tell you yes or no. Imaging is nice but it does not get you where you want to go.

     
    Old 09-04-2008, 04:25 PM   #10
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    Re: Borderline Addison's With High Cortisol?

    Hey Murphy,

    Thank you for checking in. Well, I got a call today from the Dr.'s office. They want me to go in again for another scan . . . of my lungs. Ugh! I've never had a reaction to the iodine before. But for the abdominal one, they had me drink a tumbler filled with the iodine mix as well as the injection. When they started the IV, I had an allergic reaction. I held my breath as I went through the scan. Thank goodness it's one of the faster scanners, because I instantly felt the urge to sneeze and held it back so I could get through the scan. Had the itchy throat and watery eyes instantly. When I sneezed, the nurse came running in, took one look at me, and alerted a doctor. I guess I turned red, my eyes turned red, and she told me my throat could close up. They kept me in observation for a while. What Fun!

    When the nurse from the Dr's office called today, I asked if they had received the scan results. They told me my abdomen was normal. Umm, I wonder if they saw something again at the base of my lungs. I tried to pick up the report at the Imaging Center, but the system would not allow them to print it. The last radiology report of my lungs suggested a scan at 1 year, but after the abdominal, they want one now. I should have asked more questions. Hopefully, she's just being thorough.

    Rumpled, I'm still at this. I will be getting the info off for a referral to an endo, but I might hold up on things until I find out about my lungs.

    Murphy, are things okay with you? I hope so. Some other things in my life are swinging towards the positive and I'm trying to focus on that right now.

    Take care.
    I'll check in when I get more news.

     
    Old 09-08-2008, 11:44 AM   #11
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    Re: Borderline Addison's With High Cortisol?

    The lungs can be causing the cortisol issues - which is why they are looking at them. What is your ACTH?

     
    Old 09-08-2008, 07:33 PM   #12
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    Re: Borderline Addison's With High Cortisol?

    I just dug out the saliva test results and it mentions ACTH once:
    Elevated cortisol levels usually indicate increased ACTH stimulus. When this elevation is coupled with normal DHEA levels, then a divergence in steroid output has occurred. There are several other notations, one mentioned several times is hypercortisolemia

    I am assuming that there is a separate test for ACTH. The only follow up test, other than imaging, has been the suppression test. More answers lead to more questions. . . I'm going to move forward with the referral.

     
    Old 09-09-2008, 10:03 AM   #13
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    Re: Borderline Addison's With High Cortisol?

    It is a separate test - it is what the pituitary sends out to signal the adrenals to release cortisol. However, rarely it can happen that a tumor can develop elsewhere in the body that will secrete ACTH on its own and mess up the entire system and most commonly, those tumors are in the lung!

    If so, the ACTH will usually be wicked high.

    ACTH though is one of the most messed up tests in lab history (IMHO). It degrades at room temp in minutes. So if not in a lavender topped (EDTA) tube, preferably chilled, spun immediately and then frozen right away, your results are skewed down significantly. If the tech just tosses the tub in the bin, your results are ... wrong. Renin is the same. I yell, scream, cajole, bring my own ice... do whatever I can... and rarely do I get good results as it takes too many steps and they are busy... DANG.

     
    Old 09-09-2008, 06:35 PM   #14
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    Re: Borderline Addison's With High Cortisol?

    This is good to know. When my NP calls for follow up, which I hope she does, I will ask about the test.

    I just went in for the CT of my lungs. The tech always asks what the scan is for and I told her serial imaging for this one. They have previous scans with the multiple pulmonary nodules . . . it may be that one of them is secreting ACTH. (I reacted again to the iodine, this is something new I have just developed.) Plus, I got a copy of the abdominal scan. All in the abdomen looks good, except there is a new finding in my groin: Fluid in the left inguinal canal, however there is no evidence of hernia of bowel nor fat. UGH! I tried researching this new stuff, but after internet searches, they all indicate hernia, which the radiologist specifically points out, there is no evidence of. (Although, I've had several hernia repair surgeries mostly when my GYN was doing female surgery and repair on the side.The worst of which was rectocile, which was a procedure all of it's own.) Some other stuff comes up, but I'll let the doctor analize whether or not it's of concern.

    I'll pick up the radiology report of my lungs tomorrow and hope for some good news and even better, good answers.

     
    Old 09-11-2008, 04:02 PM   #15
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    Re: Borderline Addison's With High Cortisol?

    The Cat Scan for the lungs came back with some intersting news. The nodules are not as pronounced, however, the atelectasis (area of lung collapse) has expanded a bit.

    I guess I will lighten up on my insurance company though. They obviously have been monitoring the tests because a Nurse Representative for the insurer specifically for my employer called me today at work. She wanted to review a few things and was asking me about my health. When I spoke of the cortisol, she was pretty insistant that I get to an endocrinologist. Ummm, I guess, the third time is a charm. I was told that low cortisol is something she sees a lot of and that high cortisol is pretty rare and can be very damaging, (which I know...and now know may be the cause for many of my female and bone issues leading to surgeries.) She spoke of the homeopathics being good for preventative care, but for existing health issues, they aren't reliable. . .treating the symptoms and not the cause. She even emailed a list of health care specialists to me at work and at home to be sure I get to the specialist. From the conversation, I gather the assumption that the tests are being aimed at the wrong things. She had my files and information there. I'm glad someone is reviewing the entire picture. Soo, I have an appt for the Endo on Oct 2nd. I've already got the saliva test results to them, but they want more info from other doc's, gyno, neur-surgeon, etc.

    I did let it slide, even after two doctors who are friends, said how important it is to get to a specialist. I guess I was thinking the homeopathics may work because of the NPs suggestions. However, the 3rd time is a charm, the Insurance company having a Nurse call is a good indication that my healthcare should take a different course.

    Thank you rumpled . . . From this call today, and what you and others have said, this cortisol stuff is serious.

     
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