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Monday, March 25, 2013

Adrenal Insufficiency & POTS Background

Two of my diagnoses are Adrenal Insufficiency and POTS. They have very similar symptoms, and their treatments actually overlap to some extent. I thought I'd try to do a post explaining these conditions and detailing my history with them...

So, to start off, your adrenal glands produce the steroids that the body needs in order to maintain vital functions, like blood pressure and blood sugar (these are NOT the kind of steroids that baseball players take - large doses of this kind of steroids can actually cause your muscles to waste away!). The adrenals also secrete extra hormones to help the body during times of stress or illness. In AI, the body fails to secrete these hormones as it should. This can result in a life-threatening situation called Adrenal Crisis, which can cause the body to go into shock. Treatment for AI is with oral steroids to replace what the body fails to make. Just as a diabetic person must take insulin, someone with AI must take steroids.

In large doses, steroids have a strong anti-inflammatory and immune-suppressant effect, so when I had Ulcerative Colitis, I was treated with very high doses of steroids, among many other medications. My UC didn't really respond well to anything but steroids, and when we'd reduce my dosages, I would usually start having more bleeding and worse UC symptoms, so I went off and on steroids most of the time I had UC.

In October 2009, after reaching the end of medical options for treating UC, I had surgery to remove my worthless colon! After surgery, I began tapering off of the high doses of steroids. After a few weeks, I started feeling quite bad - craving salt, shaking, feeling very light-headed. I was fighting a wicked kidney infection, so the doctors figured that I needed additional steroids until I got better. They gave me a new, much slower tapering plan - I think it was 1 mg per week. I did okay until early 2010, when I got to about 5 mg per day of prednisone, and then, despite slowing the taper even more, I simply could not go any lower. I got very, very sick. My muscles became so weak that I could barely walk, and I had daily episodes of becoming completely incoherent, unaware, nauseous, shaking all over but unable to purposefully move... it was pretty scary. I went to the doctor, and they would have to pump me full of IV fluids. Afterwards, I'd feel better... for a day or two... then I'd be back at the doctor, a shaky, sweaty, dizzy mess.

After a few weeks of this, I was diagnosed with Secondary Iatrogenic Adrenal Insufficiency. The "Iatrogenic" means that the doctors caused my AI by use of steroid medication. The "Secondary" means that there is no problem with my actual adrenal glands - the pituitary gland in my brain has just quit telling my adrenal glands to make steroids, since I'd been receiving steroids exogenously for so long. I was started on two kinds of steroids to replace what my body isn't making (although I found out this week that one of these is actually unnecessary for secondary AI). The doctor said I'd need to take steroid medication until I was stabilized and my pituitary and adrenal glands "woke up" again, and at that point, I would be able to very slowly taper off the steroids.

Long story short... that "stable" hasn't really happened... and to this day, I've been unable to taper off of the steroids. In fact, my body requires incredibly high doses of steroids just to get through a day - I take nearly TWO HUNDRED PERCENT of the steroids that a large man needs! Despite this "overcorrection" of my Adrenal Insufficiency, I still deal with a constellation of low steroid symptoms, including debilitating fatigue and lightheadedness, on a daily basis, and go into adrenal crisis when I attempt to taper to a lower dosage. This has baffled the doctors.

Last April, I received another diagnosis, POTS (Postural Orthostatic Tachycardia Syndrome) that helps to explain some of my symptoms that haven't gone away, despite steroid treatment. POTS is a type of dysautonomia, a disorder of the autonomic nervous system (the ANS). The ANS controls things like heart rate, blood pressure, sweating, digestion, etc, without any conscious effort on your part. Since my ANS went haywire, my body is unable to regulate itself.

To give one example: normally, when you stand up, the blood vessels in your legs contract, so that the blood returns to your heart (and head). My ANS forgets to tell my blood vessels to do this, so gravity takes over, and all my blood pools in my feet (some of you have noticed my purple feet). I get no blood to my head, so my heart starts racing to try to fix this... and I get very dizzy and can't think straight, because my heart is pounding, but I'm not getting any blood to my brain. It's very hard for me (and for the doctors) to differentiate between POTS and adrenal symptoms, as they are pretty much the same, so it's a constant guessing game and balancing act. I must faithfully avoid stressful situations, heat, cold and illness (because all those things are SO easy to avoid), constantly tweak medications, fluid, salt and electrolyte intake, and exercise daily. Despite these and many other lifestyle changes, I still feel very, very tired and lightheaded much of the time. Because of my fatigue, I have to spend a lot of time laying down (while propping my upper body up to help maintain "sympathetic tone")...which is bad, because then my body gets more used to laying down, making it even harder to stand up again... it's a vicious cycle.

To sum up in an alliterative statement, my combination of conditions cause a lot of complications. Since I lose so much fluid daily as a consequence of missing my colon, I have low fluid volume, which makes POTS worse. When my dumping syndrome acts up, I may or may not absorb my medicine, which can be very dangerous when your body depends on those medicines to keep you alive! I had chronic infections in my abdomen and pelvis from September 2010 through May 2012.. and you'll recall that the body needs more steroids when it's fighting infections. As the abscesses waxed and waned, my steroid requirements were pretty unpredictable.

I was supposed to be able to taper off of steroids years ago, and not need an Endocrine doctor... this was all supposed to be temporary... but my body has had other plans and apparently didn't read the textbooks about how this is supposed to work! It's always a challenge and there's never a dull moment as I try to balance everything to stay safe and healthy!

Hannah ;)

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