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Addison's Disease Message Board


Addison's Disease Board Index


Missing Something?
Mar 4, 2007
Hi, I'm a new member to the board, but familiar with AI and AD. I'm in about a 20-year decline since my early 30s. Along the way, serial doctors have found (with objective labs, etc.), in this order, insomnia, depression, hashimoto's thyroiditis, hypoglycemia, seasonal affective disorder, sleep apnea, gluten intolerance (but negative biopsy for celiac), adrenal insufficiency (likely primary). My initial cortisol saliva test in 2005 was 8AM: 5 (range 13-24), Noon: 4 (5-10), 5PM: 1 (3-8), 11PM: <1 (1-4). My sodium was low, and potassium sky-high. My BP has been low for years, ranging from 99/66 to 106/73 (at 6'1" and 210#). I'd "gray-out" often, especially when standing, having to hold on to keep balance. Constant fatigue and muscle weakness.

Since 2005, my internist MD has gingerly increased my cortisol, wanting to be careful with it. Since fall 2006, I've been topped out at:
Oral Hydrocortisone: 37.5mg (25am / 12.5noon)
Pregnenolone: 180mg (120am / 60noon)
Florinef: 0.2mg (0.1am / 0.1noon) - I know this is high, and have tried backing off to 0.15, but that amount does little. It takes 0.2 to bump my BP (currently at 109/78) and my weight (oops).
Armour Thyroid: 150mg (90am / 60noon)

I'm waking up and going to work now without the heroics needed to push through morning fatigue/weakness. My body temp is now finally holding pretty steady at 98.4 (was 97.4 and swinging a year ago with lower Hydrocortisone and Armour). The Florinef eliminated my gray-outs (reduced at 0.15, eliminated at 0.2). In the last 3 months I've managed to slowly work up to 12 minutes per day on an exercise bike (more than that drops me back into fatigue and weakness).

I've experienced adrenal crises both before and after the medication regimen, triggered by things like strenous hiking (back when I could do that), work stress, surgery, missing meds, etc.. My most recent bout was triggered by a simple 45-minute moderate exertion on a short home improvement job last weekend. Was weak, limp and confused on the floor for an hour before dragging myself to my meds.

SO MY QUESTION... am I missing something obvious? I mean, with all that, I'm still fatigued and weak (although steadier without the wild good day / bad day swings). And I still can't even consider hiking or vacationing with my young children. And 45 minutes of moderate work should not kick me into adrenal crisis, should it? It is my understanding that Addison's can be managed to allow a reasonably-normal life. I'm frustrated that I'm not there yet.
Thanks Hormoneman!

Yes, Hydrocortisone, compounded. I knew it had a relatively short half-life, but not that it could be as short as 1 hour. I'll ask my MD about what you suggest. In the meantime, I do have several strengths available to me (she wrote separate 5, 10, 12.5 and 15mg rx's for me some time ago), so I can space the same overall dosage more evenly through the day. I most recently moved some to suppertime and sleep a bit more soundly. (i.e. reduced early AM awakenings)

On the thyroid meds, I have kept a "well-being index" in the past, especially anytime while adjusting steriods or Armour, I've also kept a temperature index (like Dr. Rind's). I haven't been to the Thyroid forum yet at all... I'll visit.

I'm not taking salt water with the Florinef, but my salt cravings have diminished. I still salt my foods and will sometimes crave salty snacks. I used to not salt at all, listening to conventional wisdom. Question - just drink salty water? Before taking Florinef, I would mix a little lemon juice and stevia into salted water... is that reasonable? Yes, I will pick up some sea salt... I do have some pickling salt (pure) that should tide me over a couple days until I get to the store.

Yes, my DR has tested my hormones pretty regularly. They've gradually come up to low-normal range.

Re. the Pregnenolone, she's pulling me back gradually on that. AM Serum cortisol was 4.9 (range 4.3-22.4) on my last bloodwork.

(p.s. My neurotransmitters have all been bottomed out as well.)

Thanks for the advice, Hormoneman. I'll visit my MD a bit better informed in 2 weeks. Anyone else see anything out of whack?





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