About 5 years ago, I hit leg and got cellulitis. A year fighting this caused toxic shock (septicemia) and an emergency admission to the hospital. Five days of central line antibiotics, 4 different kinds, and 3 courses of it at home, and I was 'cured'.
For two weeks after getting out of the hospital, I felt fantastic. Then... everything fell apart. My body failed me at every turn. Was tested for every autoimmune, because they said symptoms were 'classic autoimmune', but all were negative. Two rheumatologists dismissed me. Went through 4 docs in 2 years.
TSH, after 3 months taking 1.25mcg levothyroxine, was 18.9. I'm currently taking 2.75mcg levo morning & .75mcg levo afternoon. Pain, swelling, fluid retention, nausea (vomiting), trembling, spasticity, tenderness to touch, insomnia coupled with severe and debilitating fatigue, inability to concentrate, and more... all still there. They treated with antidepressants, told me I was depressed, said maybe it was fibromyalgia, or a ‘pain syndrome’.
Then we got an unexpected break: I was bit by a brown recluse (fiddleback spider). I broke out in a systemic rash. PA gave a shot of steroids. For almost a week, I felt pretty good. I moved to the Houston/Galveston area, and the PA I'm seeing here gave me a steroid shot for inflammation, and the same thing happened. About five days without pain and w/more energy.
She wondered about Addison's. She gave an injection and prescription for prednisone 5mg, twice per day. Later, she increased it to 10mg, twice per day. She then scheduled a 24-urine coritsol-it was low-normal. I didn't know to avoid caffeine or that steroids could affect the results. This test was invalid.
I had gained almost 60 pounds in fluid water weight, over a three-day weekend period. She freaked out and sent me for an abdomen CT. Results normal.
The endocrinologist retested 24-hour urine cortisol. This time, we took the test the right way, with no caffeine, no steroids (had to work off them and stay off them for two weeks to get the test done, and that was tough.) This time, my 24-urine cortisol was low-it was 3, with him saying 5 was low-normal, and that it could account for pain and fatigue, because the body wasn’t healing well, but he mostly blew it off and said it wasn't 'low enough' to cause problems. He also said that the fact I had GAINED weight contraindicated diagnosis, since adrenal insufficiency, particularly Addison’s (or primary AI) usually presents with weight loss and anorexia. I had gained a LOT of weight, super fast.
When I insisted steroids made me feel better, and that matched w/low steroid tests, he agreed to an ACTH stimulation test. Endo retested 24-hour cortisol & free cortisol, and results were low again, and that prompted him to order an ACTH stimulation test (Cortrosyn, with cortisol at baseline, 30 and 60).
Stim test started at 8am. Baseline cortisol was 4 (not a typo-it was 3.6, to be exact)–was told at hospital it should have been at least 15, preferably 20-25). 30 minute draw was 12 and 60 minutes was 15. Even after stimulation, I didn't get up to ‘low normal’. Doctor called, said, "You failed the test...we need to get you on steroids." He said he was surprised I wasn’t in the hospital—I told him I’ve felt so bad for so long, I didn’t know what was worth going to the hospital for. I had told the truth when I said there were days I literally could not pull myself up physically out of bed.
I have tried to find anyone w/numbers as low, to see what dosages were prescribed. I also can’t find anyone’s ACTH stim test that responded the way mine did. I did triple (more than) my baseline, which I've read could be indicative of pituitary showing not enough ACTH to stimulate adrenals to normal levels. Even triple baseline, it was not low-normal. I don't know if that matters. Pain & symptoms came back next day.
Because I am overweight, not underweight, and anorexia is a symptom of this condition, doctor told me he didn't think I'd fail; he was surprised I had failed, but he began throwing things at me: take a triple dose if I get sick, call him if I have to triple dose, get a medic alert bracelet and a card, get an emergency syringe dosage in case I'm found unconscious...that's a lot to throw at someone he thought didn't even have this condition.
Put me on hydrocortisone, 20mg-morning, 10mg-afternoon, 5mg-early evening. It helped, but pain & fatigue was still there, and I was still puking and unable to eat more than a few bites, but was still gaining weight. In the evenings, the pain was bad. He did another 24-hour urine cortisol, while on hydrocortisone, and I was still a 3... a little bit higher, 3.6 this time, so almost a 4, but still low, even with what appears to be high doses of hydrocortisone.
He switched me to dexamethasone, .75 in the morning and hydrocortisone 10mg in the afternoon. He wants to retest urine cortisol in August, but also said to call and let him know if I'm feeling better. He has no tests ordered and no appointment scheduled until August.
I've been on dexamethasone for a week now. It's helping. Fluid is greatly reduce (though I'm peeing like crazy!), I'm more active, pain is reduced (no pain in the morning after dosing, but pain comes back in the late-afternoon, early evening), sleeping better, eating better too, less nausea.
But symptoms haven’t gone away... does it take time for the steroids to make me feel better? Am I dealing with something else that's being missed?
I'm curious why he didn't test ACTH levels at the same time as stim test, because wouldn't that have helped him decide if it was pituitary and/or adrenal, or both? Would that change treatment? They missed this condition for over four years of testing, so I worry that this is secondary to another condition that they are missing, and that my body is just tired from the stress and thus secondary adrenal insufficiency undiagnosed becomes ‘primary’, but the symptoms are for a completely different condition.
My FSH, testosterone, estrogen, androgens all normal. I am not in menopause. My thyroid is regulated on the levo; my last TSH was 1.7 (little low, but ok for someone with treated hypothyroidism). Last T3 & T4 tests were a year ago, but were normal on meds. Sodium is normal (I crave salt like you would not believe), potassium has a tendency to go low when on steroids and high when I'm not, but the last two tests were normal readings for me. VitD and folates are normal.
Since I have two endocrine issues controlled by pituitary: adrenal insufficiency & hypothyroidism(and suspected but not confirmed diabetes insipidus–but not diabetes (blood sugar is fine or sometimes low), seems to indicate there IS an HPA-axis thing going on. This correlates w/high-dose antibiotics I took in the hospital damaging the pituitary or the septic shock and infection destroying the pituitary.
Considering I'm still in pain, though improved, and I'm not scheduled to go back until August, what should I do? Are there other tests I should be asking for? I'm self-pay-money isn't major if tests need done, but I can't throw money away. I have no insurance, so no worries w/approvals. I don't want to continue in pain until August if there's other things we can do.
Can I expect to continue to improve with the same treatment or does improvement usually come faster? Am I being impatient and should wait for the dexamethasone to work or is the fact that, after a week, I'm still not feeling great an indication of a problem?
I know it's a lot to chew on... I don't expect anyone to have all the answers to all my questions... but I'm spinning in circles here, and thought maybe you guys could give me at least a direction to proceed before Aug, so I'm not just sitting around popping pills that might not be helping or could be hurting.
Thanks so much for listening/reading...