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Addison’s disease: Always the storm, never the calm

October 15, 2007

I remember Gravy Train dog food commercials. I guess you had to add water, but all I heard was “Makes its own gravy!” For some defective reason, I still say that a lot. I’m actually trying to explain something to people who wonder what Addison’s is like.  “Makes its own stress!” I don’t have to add a thing.

Night sleep lasts an hour to maybe three hours at a time, but regardless of how much sleep I get or don’t get, I’m never rested. This is familiar to anyone with fibromyalgia or chronic fatigue; I have both. But the unrest of Addison’s depletes vitality in other ways.

With Addison’s, the crucial stress hormone cortisol is underproduced. I don’t make enough cortisol to calm the adrenal storms.  Cortisol is one of few hormones that is essential to life.

Hormones have to work together. If you don’t make one in sufficient amounts, everything else is out of whack with it.

The hydrocortisone I’ll be taking is a replacement hormone for the cortisol I lack. It will replace the amount my system would normally produce. But the normal dosage will not boost the amount needed under stress. This is why people with Addison’s require extra hydrocortisone if they are in an accident, or undergoing surgery, or subjected to trauma or significant stress.

Under stress, people whose adrenals function normally produce extra cortisol to brace their system. With Addison’s, this doesn’t happen: the person goes into shock unless sufficient hydrocortisone is administered.

Shock can result in death within about an hour while ER docs are trying to figure out what’s wrong. Addison’s is rare: it occurs in 1 in 40,000 people (my doctor’s figure; others say 1 in 25,000). So low cortisol isn’t always at the top of an ER doctor’s mind the way, say, diabetic ketoacidosis would be.

For these reasons, some people with Addison’s wear Medic Alert bracelets so that proper information and instructions can be readily obtained.  My endocrinologist has strongly recommended that I do this, and having learned the little I have so far, I agree that it is a sound thing to do.

Combat FatigueAddison’s brings about physiological combat fatigue. The Addisonian’s body is under constant stress because it never receives the all-clear memo from cortisol.

I thought I knew all about fatigue from more than 20 years with fibromyalgia. But the fatigue that sent me to the endocrinologist this time was different.

I never had to curtail very many physical activities because of fibromyalgia. Arthritis, not fatigue, grounded me from distance walking and bicycling. The Addisonian fatigue is like the end of life; I don’t want to be maudlin but there is no other way I can express it. Vitality is sapped.

Unlike other illnesses, like flu that makes you dead-tired, the adrenal stress of Addison’s keeps churning, unmitigated by cortisol, and anxiety overtakes the fatigue at intervals. Asleep and awake, I’m a little combat zone.

Some of my friends stamp their feet and demand to know why I have to wait so long to begin taking hydrocortisone. First the disclaimer. Careful monitoring and competent emergency care, should I ever require it, will keep the disease from being life-threatening. But the treatment may or may not alleviate the fatigue. I’ve read many cases of people who continue to rail about the debilitating fatigue even taking hydrocortisone. I can only pray that in my case it will mitigate my symptoms.

The reason for the wait is prosaic: my endocrinologist was scheduled to go on a two-week vacation right after he diagnosed me. The hydrocortisone I will be taking isn’t the stuff you put on your mosquito bites. I will be on a tightly managed protocol with regular blood monitoring. I am very grateful my doctor wants to be on hand when I begin this regimen. I think this is only responsible.

I feel very fortunate to have an outstanding doctor and medication available that will likely help my symptoms and restore me to my normal fatigue levels! The anxiety and hyperventilating should go away.  I am blessed to have friends upholding me while I neglect them for want of energy. And I am blessed most of all to know the One who calmed the storm and lives to advocate for my help.

  1. October 15, 2007 9:53 am

    I will think of you when I get up for my nightly bouts to the bathroom. I wish that’s all you had awaken for!

  2. October 15, 2007 10:09 am

    Well, there’s always that, too! And thirst! Funny how one thing adds to another but never displaces it! Now I’ll always wonder whether we’re synchronized, Rachel….

  3. October 15, 2007 10:32 am

    My thoughts go to the apostles in the boat on a raging sea. And of course here, Christ is asleep.

    The apostles are fit to be tied and they beg their Master to calm the circumstances.

    In other perilous times, people are called to go through the storm. “Not my will but thine be done…”

    When the will is resigned, the fight against God is ceased and there is calm. He is a good Father to us.

  4. Ruben permalink
    October 15, 2007 1:43 pm

    Well, the secret to enjoying this is to think of the number of fine things that can be said about it. This, per Tristram Shandy, is how Cicero dealt with grief.

  5. October 15, 2007 1:59 pm

    Well, one fine thing about it is that a friend just delivered by stealth a loaf of delicious, warm home-baked bread to my door! Another is that no one has brought a meat loaf!

    But by far the best-guarded secret in the history of the supreme language is how anyone could enjoy Tristram Shandy.

  6. October 21, 2007 6:41 am

    Getting enough pain meds for extreme Fibro pain is a problem. I am sick of being accused of being a drug seeker when in fact I do not experience any pleasure from the Methadone. It takes the edge off and I get the run around when I have an episode which completely incompacitates me.

    I understand the fears doctors have about losing their licensure and that others have abused prescribed pain meds. But what are we to do?


  7. December 2, 2007 12:21 pm

    Hi, you wrote in my guestbook and told me about this blog and you are having a lot more trouble with your Addison’s than I do.

    Perhaps you haven’t got your medication totally under control? Do you take fludrocortisone? Also, some people take DHEA – I don’t know much about it but apparently some people need it as they are still fatigued after cortisol replacement.

    I don’t know if you are already a member, but there is a support group with loads of members from all over the world. Its a nice group and has been extremely helpful. Most people on there have multiple conditions and experiences very much like you.

    Lizzie xxx

  8. December 2, 2007 1:39 pm

    Hi Lizzie,

    This is an older post–nearly 6 weeks old now. I hadn’t yet begun taking hydrocortisone at that point. I’ve been on it now for 5 weeks, and the improvement is remarkable, though there have been problems balancing side effects with symptoms. Setbacks occur, but overall gain is the general rule.

    My Addison’s is primary and autoimmune and only the cortisol-producing zone of my adrenal cortex is effected, so I’m only replacing cortisol. My K:Na levels are ratio are fine, so I don’t need to worry about fludrocortisone or DHEA at this point.

    It’s been a steady learning curve, and my endocrinologist has been very diligent about monitoring and is responsive to side effect issues &c.

    I’m aware of the online support group and haven’t tapped that resource as yet but have surveyed a good UK site for information.

    Thanks for stopping by.

  9. Maggie Jones permalink
    July 20, 2010 10:29 pm

    You said: Unlike other illnesses, like flu that makes you dead-tired, the adrenal stress of Addison’s keeps churning, unmitigated by cortisol, and anxiety overtakes the fatigue at intervals. Asleep and awake, I’m a little combat zone.

    Wow – you get me, I am up late at night with Addison’s anxiety, freaking out, and hoping that this will go away soon. I have only been dealing with this panic attack / anxiety thing for a week. I have to travel to California tomorrow and I am scared to get on the plane. I want something to calm me down, but I am afraid of its effects.

  10. July 21, 2010 7:40 am

    Maggie, I wish I could give you a more useful tip. I don’t fly. Airlines tell us not to fly unless we are feeling a hundred percent — the only accommodation they appear to make for anxiety is federal marshals meeting your plane.

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