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Addison's Disease Message Board

Addison's Disease Board Index

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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