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  • Very low cortisol -- should I look for Addison's?

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    Old 10-01-2003, 05:52 PM   #1
    VariegatedFritillary
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    Post Very low cortisol -- should I look for Addison's?

    In spring 2001 I came down with what I thought at the time was a flu, but it never went away. I was fatigued, achy, and spaced out, and have been to some degree or another since then. By summer of 2001 I was no longer able to work and went on short term disability. I felt better that winter and went back to work, though it was hard going. In spring 2002 I got worse again and struggled on, but went back on short term disability by summer. I was not better enough to return to work in that winter so went onto long term disability; I've been there ever since. This year HAS been better, but I am still not very functional. I recently was tested for melatonin and adrenalcortex hormones (saliva tests over 24 hours) and my cortisol levels came back VERY low, and I'm wondering if I should look at Addison's disease.

    I had a wonderful job that I loved but that was also very demanding and stressful; it's easy for me to see that I was burning myself out on the long hours (always in excess of 60 hours per week, often in excess of 80, and at very irregular times in the day -- sometimes worked 20 hours in a row) and that I needed to make lifestyle changes there. But I have not been able to work at all (not even from home or part-time) since summer of 2002 and I am wondering if there is anything I could be doing to make myself better enough to go back to (more relaxed!) work.

    I've been tested for thyroid and liver function, blood sugar, parasites, and a range of other "fatigue-related" metabolic functions. All came back normal; also I have seen and been tested by a rheumatologist. My first doctor wasn't very proactive (I had been out of work for weeks and she told me to 'wait and see if it got better' and then suggested antidepressants), so I've had to do a lot of pushing to get looked at, or didn't get tested right away because I was too tired to push and nag. So all of this was over the course of a few years.

    I did stress reduction meditation classes (which was wonderful anyhow but didn't fix me) and therapy. I tried a anti-depressants for several months, which had bad enough side effects that I lost what little functionality I had; they had me increase the dose and I got worse. This was all through my primary care; I got a psychiatric evaluation and he took me off the anti-depressants and told me I wasn't depressed. (Which made me relieved because I hadn't *felt* depressed, but I was willing to try them because I was hoping something would help.) He told me that I was adjusting and that's been the case: I had a lot of feelings of fear and sadness and frustration when I first got sick, but after processing through those my mood levels have generally been better than they were before I got sick, because I'm more attentive to my life, have less stressors, and am always focusing on the positive: yes I'm less functional but I make a lot more of what I've got, if that makes sense.

    I noticed that I was often extremely tired and brain-fogged after eating, so I did an elimination diet even though my non-proactive first primary pooh-poohed the idea that there could be allergy factors. I identified wheat as a trigger, went back armed with this, and got blood tested for the top ten. I also got the iGa (sp?) tests for gluten antibodies. This exposed wheat, corn, peanuts, and gluten; I was recommended to go onto a gluten-free diet. This bumped me from almost non-functional to being able to cook sometimes and walk around a lot, which was a big improvement. I went to see an allergist, who identified massive allergies to all local pollens and dust mites, and started doing allergy shots. These made me very tired after the shots but the next summer was significantly better. I'm on maintainance on allergy shots now, and still practicing a gluten-free diet. (I also quit caffeine immediately when I first got sick.)

    I went to see a homeopath (trying everything!) and while most of what she did was not useful, she did say I was suffering from adrenal exhaustion and gave me raw bovine adrenal extracts; she told me to take one course and then stop. This pushed me up a level of functionality, like a stairstep. My therapist suggested an acupuncturist/Chinese herbalist, and I started going to him and got better results, and I have been seeing him ever since. I had long since ditched my unhelpful first doctor, going back to a doctor I'd had before in another city; she was hard to get to but much more help. I then found a local primary care here.

    Summer of 2002 I had a migraine headache most of the summer. I was in amazingly bad shape and a zombie (since we were doing the anti-depressant trial then.) I got off the anti-depressants but the migraines persisted; my acupuncturist found an herb combination that prevents them. If I go off the herbs they come back, and they come back during menses sometimes, but this year has been almost migraine-free. I've been improving gradually since then.

    I've had a sleep test which came back strange, but my doctor doesn't think it would help to do a follow up at a better sleep clinic. The local sleep specialist said I had interrupted sleep but it was outside of his experience, so I've pursued all I can locally.

    I've been diagnosed with chronic fatigue and fibromyalgia, depending on who's doing the diagnosis. No one seems very happy to give that diagnosis and I'm not very happy to hear it because both of those can be ongoing forever, and there's no clear treatment other than "eat well and exercise as well as you can manage".

    I've been steadily improving this year, enough to start a regular yoga program (which seems to help a great deal) but my herbalist wanted to look into the weird sleep patterns so he ordered the saliva tests. My melatonin is much higher than normal in the mornings, but goes into normal range by midday and is in normal range at night. My DHEA is within normal range. My cortisol is super low; I don't get a spike in the morning. The doctor at the lab said it was the lowest she'd ever seen.

    I've started a nutritional program for adrenal support; in addition to the Chinese herbs I am now taking a lot of vitamins including extra B-5, a CoA precursor, L-Tyrosine, magnesium, calcium, potassium, and adrenal glandular extract. All of this has seemed to help significantly: spaciness, aching, and fatigue are all reduced and I am much more functional (though nowhere near my pre-sickness levels.)


    My questions are these: Should I be worried about the possibility of Addison's disease, and start pushing my doctor towards disproving/proving it, or is it more likely I just stressed myself into temporarily burning out my cortisol production? While the cortisol come back naturally on its own? While I did work (though off and on) through summer 2002, I've been doing nothing since then.

    Regarding the symptoms I've read about, while I occasionally faint when standing up quickly, and I'm fatigued, I don't have the darkened skin which is listed as a common symptom. My appetite is often low but my weight has been very stable once I got into a pattern where I would make myself eat even if I wasn't very hungry -- I dropped ten pounds in summer 2001, but then regained it and have been in the same five pound range since then (it's a healthy weight). Once I begin eating my appetite usually surfaces, and sometimes I get hungry normally. I have only very rarely had nausea, and it almost always coincided either with a dizzy/fainting spell or with high pain levels from my joints so seemed explainable -- it was also very mild.

    Based on my reading, cortisol inhibits the immune system. I've had asthma off and on all my life, and have always had fairly asymptomatic allergies to pollens (very strong scratch test reactions but very little hay fever). It's never been a very big deal; other than a year or two in my teens I didn't take regular allergy medication; I carry an inhaler in case I have an attack but almost never need to use it. I never had any known food allergies until I first got sick, though. Could the low cortisol have played a factor in here, by letting my immune system act up over normal foods and putting me into a state where I started reacting to foods I've been eating all my life?

    I'm sorry that this got so very long! I hope it isn't out of place here; this just seemed like an appropriate place to post about low cortisol.

     
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    Old 10-01-2003, 07:17 PM   #2
    gettin' better
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    Dear Variegated:
    I suggest you take a look at this website, which has information on getting a diagnosis for an autoimmune disease: [url="http://www.aarda.org/infocus_article.php?ID=15"]http://www.aarda.org/infocus_article.php?ID=15[/url]
    Good luck to you! Some of your symptoms certainly sound like Addison's, but yours is a tangled web.

     
    Old 10-01-2003, 08:37 PM   #3
    orion
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    Quote:
    Originally posted by VariegatedFritillary:
    My cortisol is super low; I don't get a spike in the morning. The doctor at the lab said it was the lowest she'd ever seen.

    By definition, if your cortsol is the lowest she has ever seen, you are adrenal insufficient. What did your doctor do about this low cortisol, just ignore it?
    Low cortisol causes all kinds of weird symptoms so I guess it's time for some some tests in that direction.


     
    Old 10-01-2003, 11:41 PM   #4
    VariegatedFritillary
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    gettin' better: thank you for the link! I've learned some of this the hard way in the last few years, and wish I'd had such a good guide when this all started. There is a lot there that I didn't know and need to learn about.

    orion: This was the doctor at the lab, so I don't actually have a good sense for her or how many people she's seen. She's not my primary care.

    I guess I started asking because, hm. I have had a great deal of blood tests and other tests and a whole lot of "there is nothing wrong with you that we can see; we have no explanation for why you're so tired."

    What few unequivocal medical issues they could find:

    Anemia in 2001. (From a CBC.) They told me it wasn't ever low enough to explain my fatigue. I took iron supplements and it was responding a few months later and was low normal in the January 2003 CBC. They told me that some people have low iron all their lives and don't notice, and I'd never had a CBC before, so it could have been pre-existing for me.

    GERD (diagnosed by a barium X-ray series). Fixed with diet; it never seemed like a big issue to me. My doctor at the time also thought I might have IBS and recommended peppermint oil, but that was the first doctor whom I didn't really trust; the peppermint oil made no difference that I could see and I discontinued it. GERD is really easy to control for me (mostly by not overeating; I'd already gone cold-turkey on caffeine), so I got it under control and went off the medicine and it has been negligible since then. It also may have been pre-existing; I had to learn not to block the pain so I could recognize the symptoms and prevent it rather than ignore it and I could easily have been ignoring it before that.

    The various allergies (scratch and blood tests, and iGa antibodies.) After I'd been off gluten for six months I did a transglutamate test and came up negative, which was great news. I don't know of gluten intolerance in my family, but I'm of Western European stock and it's pretty common there. A lot of people have the a genetic predisposition that is triggered by stress. This is manageable through diet; if I ever get better I can think about re-introducing gluten (and bracketing the re-introduction with antibody tests to make sure it's not messing with me.) Celiac can cause fatigue, but heals within six months to two years, so even if I had some cilia damage (if it was pre-existing, maybe) it should be well healed even in the worst case. If it was triggered at the same time as the fatigue I probably didn't damage my cilia much. (And I didn't have a lot of the other symptoms of celiac, so that hasn't been a major worry for me since I got off gluten.)

    The airbornes are harder to avoid, and my fatigue tracks with allergy seasons (and allergy reactions) pretty solidly, and my incidence of crashes is higher after I go outdoors in allergy season. The fatigue doesn't respond to anti-histamines; I've rotated through a whole bunch of them. It reduced after a course of immunotherapy and is increased on shot days. My allergist's theory is that the allergies don't cause the fatigue, but that they make it worse because of the added load.

    I repeatedly test positive to the fibromyalgia "tender points" diagnostic method, but I'm generally a lot more comfortable with quantitative methods, and it seems fairly subjective to me. My second (in another city) primary care told me she didn't know what was wrong, but that she didn't want to diagnose me with CFS or fibromyalgia because there is no course of treatment; she only diagnoses for treatable illnesses. My current doctor has diagnosed me but I get the feeling it was because after all that time he had to start calling it something.

    I haven't done a ton of reading on CFS or fibromyalgia mostly because I don't want to hop around trying really weird things; I've had all sorts of unsolicited strange suggestions and home remedies from friends and acquaintances, from "maybe you're just looking for attention", to "take really concentrated mineral salts" to "get pregnant" (!). I found it really exhausting to deal with. So I've read the CDC definitions of the conditions and I've read practical "how to manage your life, sensible diet and vitamins and energy, time management" guides and avoided digging into the really extreme and strange things out there that I've sort of seen the edges of. No one ever got hurt by sensible diet and exercise so I felt safe enough doing that. Acupuncture relieves some of the pain and relieves some other symptoms and the herbalism has gotten the extra migraines under control.

    I have to admit it would be a relief to finally be able to follow a known course to regain my health. So I'm balancing between wanting to dig and research and not wanting to go off in an inaccurate direction. I was actually out of "talking to specialists" mode when this came up: the last specialist I saw was a rheumatologist who told me that he saw a great many people like me who came to him at the end of the line. He verified that I didn't have arthritis or lupus, and he told me that what I need to do is work out how to manage my life as I am now without letting it own me. To not go around seeking expensive and ineffectual treatments, but to find a way to get decent amounts of exercise, and build my life so that when I have a flareup I can still feed myself and function. This seemed sensible, really.

    So I'd been working on that basis, and this "let's try this test to see if we can work on these sleeping problems" result... I was expecting to have another "you're perfectly normal as far as WE can tell" result, frankly.

    So my major question now is: is adrenal insufficiency silently dangerous enough (over the course of a few months, in addition to the past few years) that I should press harder for answers? From what I've been able to find, there are some descriptions of it being really dangerous, but nothing that really shows me a progression. So I am wondering if it goes from 'basically okay' to 'suddenly in the ER' or are there enough steps and warning signs in between that I can afford to try the softer route first before I go pushing for another round of tests?

    I'm scheduled to see my doctor in a month, so I can press harder at that time if I need to. I've given him these test results, too, and talked to him briefly; he went through all the supplements I was taking and approved them, and wanted to make sure I wasn't taking too many of the raw adrenal extracts; I'm just following the manufacturer's instructions there so he okayed that.

    My primary care is family practice who specializes in chronic pain; he's very interested in mind-body medicine so he gets people who need to manage pain levels and blood pressure. Some have CFS but most have blood pressure issues or are recovering from injuries or serious back problems. I think the meditation practice and emotional work for mind-body medicine is helpful at the very least on the level of emotional support and pain management but I also think I'd be negligent if I didn't follow up other obvious paths. I've just had trouble knowing what other paths are obvious.

    My acupuncturist/herbalist doesn't do nutritional medicine; I've been basing the supplements off of Prescription for Nutritional Healing by Balch and Balch. I'm wondering if I should find a dedicated nutritionist or wait to see if this current course works.

    I've been keeping very close track of my activities and how many crashes and other serious symptoms I have, and tracking my sleep times. My progress in the last month has been measurable, despite a setback during that period (I'm still better than three months ago and last year.)

    My current plan is to keep on this track for another month at least and let the supplements (I've already been taking them for a month) have a chance to do their work. If I'm still crashing a lot at that point then I will insist on further tests through my primary care and get further opinions from an endocrinologist. Given how referrals work here that means I would be seeing specialists somewhere between November 2003 and February 2004. I have to choose between great doctors I can't get to without help (since I am too fatigued to drive long distances to another city) and don't have good referral paths to and local doctors I can get to (and get referred to) easily, but with slow referrals and less experience. If this is something really tricky, though, maybe I should go back to making trips again.

    My plan if it does all seem to be working: wait through the beginning of spring and do another saliva test in May 2004 to see if my levels have improved, as a sanity test. For the past three years I have gotten significantly worse in March and April, so I want to wait through that time to see what's happening.

    Is this sensible or am I not being proactive enough?

    I don't want to rush around if waiting will tell me the answers just as well and with not a lot of chance for danger.

    I don't want to take unnecessary tests. I don't know if my current doctor doesn't want to do further tests (for instance the follow up sleep study that the sleep specialist recommended) because he prefers holistic methods and is biased against them or because he just thinks they wouldn't be useful for me.

    I don't want to seek a diagnosis just so I can finally have a name for what's going on. My emotional reaction to the test was "Finally! Something odd that shows up on a test!" That makes me worry about my motives, since I would really like to have a better explanation -- but I don't want to force myself into an explanation that isn't real.

    I have a copy of my results, though no real idea of what they mean, other than that they do seem very low:

    Adrenocortex Stress Profile (Saliva)

    Cortisol:

    7AM-9AM: 0.27 (Reference range 0.27-2.06 mcg/dL)
    11AM-1PM: 0.12 (Reference range 0.03-0.77 mcg/dL)
    3PM-5PM: 0.06 (Reference range 0.03-0.56 mcg/dL)
    10PM-12AM: 0.04 (Reference range 0.03-0.50 mcg/dL)

    DHEA 7AM-9AM: 95pg/mL (Reference range 14-277)
    DHEA:Cortisol Ratio/10,000: 352 (Ref range 35-435)

    I'm wondering if the "that's the lowest I've ever seen" was because I defined the new reference range for that lab on the morning sample? I don't know how they work.

    I'm sorry this is so very long and babbly.... I think I was just surprised by having positive test results on anything and am still processing it. I didn't actually *intend* to do more than ask a few simple questions, and all the rest of this just keeps coming out -- some because it's hard to explain, but some I think because I'm telling myself something -- sorry to expose all this dialogue but I didn't really realize it until just now. I'm normally verbose but this is extreme even for me, and this is the first time I've posted to a medical board.

    Um, I'll shut up now. And thank you for your help.

    (Edited because of typo.)

    [This message has been edited by VariegatedFritillary (edited 10-02-2003).]

     
    Old 10-06-2003, 01:29 PM   #5
    HeatherW
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    Hi,
    You need to see a real doctor. Preferably a Endocrinologist. I am amazed that these quack pots have not killed you yet. I have friends that have every sign but the doctors will not treat them because
    they have not gotten that all important low cortisol test. You have the test results and no one cares. I am dumbfounded. Addisons disease or adrenal insufficency is life threatning. It cannot be treated with herbs and most holistic medicines. You migraine is more tham likley a sign of very low blood voulme. Please find someone who understands the sevarity of this disease before you reach a crisis. It will kill you if you are not prepared. Heather W.

     
    Old 10-11-2003, 06:32 AM   #6
    AngelaA
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    Hi,

    We seem to be in similiar situation of having been diagnosed with adrenal problem yet drs seem reluctant to do anything. There is no endo in town, so it is between my ob/gyno that does some endo work and a naturopath to treat me. My GP doesn't know anything about cortisol and adrenals. Actually I just called a internal med office and had them ask the nurse if they do ACTH stim testing and she asked what the adrenals were!! Meanwhile naturo has not gotten back to me since test results came back. I started on my own taking adrenal extract. I'm taking Androgen I believe it is called by Metagenics. Just wondering what you are taking and if you have tried Isocort?

     
    Old 10-16-2003, 01:14 AM   #7
    1luke2
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    VariegatedFritillary: With cortisol that low I don't see why you would *not* supplement. I wouldn't worry about an endocrinologist though, they are notorious for treating lab tests and ignoring symptoms, however severe.

    I strongly suggest you to read up on "cellular thyroid hormone resistance" as advocated by Dr Lowe (www.drlowe.com). His 'hypometabolism' hypothesis probably explains most of your symptoms. The adrenals and thyroid work in tandem, so its likely you'll need to supplement them too with hydrocortisone or isocot.

    Dr Lowe's work is really quite brilliant (and trust me I have read _everything_) and his treatment is effective. I have fibromyalgia and have found his web site and books extremely helpful in an ocean of ignorance from conservative and alternative doc's alike, on and off line. Phone consultations with Dr Lowe or his wife Dr Honeyman-Lowe are a good idea, and you don't necessarily need a co-operative local doc - most meds you need can be ordered online, believe it or not! I didn't, but there you go Read up first though, its a complicated topic, so its best to know what you are treating and why.

    HTH
    -luke

     
    Old 10-18-2003, 03:03 PM   #8
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    VF, I am not familiar with all of your symptoms, but it may be worth your while visiting the Thyroid Disorders section of this board. There is someone there by the username Meep (and a few others), who have thyroid disorder, and resulting adrenal issues, and are very helpfull. Rather than typing all this again, you could post there, and just cut/paste the URL to this thread. I'm sure they would be happy to take a look.

    If you visit that section, you will quickly learn of many people who have visited Doctor after Doctor, being told they have everything from depression, to bi-polar disorder, to psychological issues, etc. , in part, because the thyroid test came back normal. Then, one day, only after years of suffering, finding a Doctor who understands thyroid disorders, trying thyroid meds, and viola! they get significantly better.

    I myself, have an underproducing thyroid gland (Hypothyroidism), and have just now been told my 24 hour urine test showed abnormal for coltisol. So the Endo wants me to take one pill in the evening, they have blood drawn the next day. Not sure what that is, but ok.

    It would not be uncommon to have thyroid issues, yet have the blood test show "normal". The common test used is the TSH. This is commonly the only test done for thyroid, but is not the best indicator of thyroid function, since is does not actually test the thyroid. Please go to that section, and just read a bit. Maybe it will help / maybe not.
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    Old 11-11-2003, 12:03 AM   #9
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    Variegated! Please check out the book "Safe Uses of Cortisol" by William Jefferies, a retired endocrinologist from the University of Virginia. He talks about 20+ years of clinical practice treating adrenal insufficient patients with natural cortisol hormone. Excellent reading, and it may bring you hope for a swift recovery. Best of luck.

     
    Old 11-22-2003, 11:13 AM   #10
    LeeHarrisSmith
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    Re: Very low cortisol -- should I look for Addison's?

    CORTISOL. Low cortisol is a major clue. All you need now is to determine if it is primary or secondary adrenal failure. Primary adrenal failure means that your adrenals are defective. Secondary adrenal failure means that your pituitary in not sending ACTH, which drives the adrenals to make cortisol. Low cortisol is best detected with a "24-Hour Urinary Free Cortisol" test.

    If an ACTH test determines the adrenals are functioning, then the problem is either your hypothalamus, which drives the pituitary, or your pituitary, which drives the adrenals. The treatment is the same for both problems: take hydrocortisone daily, usually 25-30 mg, although some of us need higher doses (55 mg). Alternates to hydrocortisone (Cortef) are Decadron or Prednisone. The literature I've read claims that hydrocortisone is the drug of choice.

    For either problem you need an MRI, without and with dye, to detect tumors of the hypothalamus-pituitary region.

    THYROID. My doctors always ordered a TSH test (Thyroid Stimulating Hormone). Once the adrenals are involved the conventional tests, including TSH, are no longer valid. Free-T and Free-T4 are best.

    CRAZY. If you have adrenal insufficiency, then your doctors are right: you are crazy. But given proper medication (hydrocortisone) then you will be normal again.

     
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