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Addison's Disease Message Board


Addison's Disease Board Index


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).]





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