Dex & Hydro, Cortisol Still Low - What's Next?
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.
Well, I would say welcome but this is no club that anyone wants to join...
Did the doctor test any of the other pituitary functions - such as growth hormone, ADH, ACTH, IGF-1 LH FSH?... what about other adrenal tests like DHEA-s, renin, aldosterone etc? What is your BP? Pulse? Did he talk to you about the role salt and mineralcorticosteroids - florinef? The fact that you crave salt means that you need it. So make sure you have it. I use salt pills so I don't add calories (I used to have Cushing's and had my adrenals removed). Since you potassium also drops (that is not typical - the typical is for them to go opposite sodium low and potassium high - drink something like v-8 (generic ok) to help your levels go up. Have they done a proper pituitary MRI? Any imaging on the adrenals - what did the abdominal CT say?
The weight, tired etc, - you could have cyclical Cushing's (eh..) as the symptoms as pretty much the same as AI (sad!) with some differences but the doc has to know... I failed a lot of tests with my Cushing's with that type as well. Flatlined them.
I am also in huge amounts of pain - for which I used acupunture for years but now that is not enough. I am in pain management but it not helping and I cannot sleep for the pain (which means my husband cannot sleep for my tossing).
Usually once one is on the proper dose of steroids, you are ok right away - this does not sound the case here. Have you been to a pituitary center? Neuro-endo?
My last bloodwork was: DHEA-sulfate normal at 67 with a reference range of 40-325. FSH was normal at 8.6. Cortisol was low at 3 (with ref range of 5-22). Sodium was normal, but it was the first number of the reference range, and I know it goes lower and has been lower before. Potassium was in the middle of the reference range normal. Fasting glucose was high at 105 on the test the endo did but low at 72 on the test the PA did a month earlier.
As for the endo talking to me about salt and mineralcorticosteroids - he didn't even believe that the adrenal insufficiency was there, much less considering other ramifications of it. He didn't want to give me prednisone - I had already told him the hydrocortisone helped but not enough to make a difference in quality of life, so he gave me the dexamethasone. I woke with a fever this morning, took a double dose (he said I could triple if I needed), and the double dose made me feel fantastic for about seven hours. If I could feel like that every day, I might be able to work with that!
But then I crashed... and dexamethasone is supposed to be long acting, 24-hours... it's not, not for me, and that was only with doubling the dose that I felt any relief.
My blood pressure is most of the time good at about 130/80, give or take, but every now and then when I'm super symptomatic, it will go very high (190-200/110-ish), and other times when I'm 'shocky', it's as low as 80/40 and I have to move around to keep from passing out. Doc had me on Bystolic and Lisinopril, for when it spikes high and won't come down, in 2mg doses until it's under control, but that usually causes me to plummet the next day or even in a few hours, to super, duper low and I have to get up and move around to keep it up. Most of the time, pulse is steady at 70-ish, but every now and then, I have orthostatic tachycardia, that will send me to well over 135 from doing nothing but standing up. I get orthostatic HYPERtension too (not hypo, which my doc is very confused about. She said, "It's supposed to drop, not go up..." Which got a diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) - but it's not like that all the time. Only when symptomatic.
I've ALWAYS been a salt craver, but it's gotten a lot worse. I don't do sweet at all, but man, I could lick salt licks like a horse on some days, I crave it so bad. But because of the fluid retention, they cut my salt back before they knew, and that was awful! My best friend used to buy me Gatorades - high potassium, high sodium, when I would be what she called 'shocky'. They helped a lot, but they were high in calories, and the sugar-free, low-calorie ones taste nasty to me.. way too sweet. hadn't thought of V8. I might could do that.
So the first diagnosis was possible Dysautonomia. Now, it's becoming clear there's an endo component. I also have a mild epilepsy, so we know it's a neuro component as well - possibly both together.
I know you might not think you've helped me much, but I think through thinking this out and responding to you here, we'd been tossing around finding an neurologist here in Houston. I haven't had an EEG in years. The CT of the pituitary said it appeared normal, but also recommended if further imaging of the pituitary were needed, an MRI was necessary, since the images weren't super clear.
I've been reading posts for about a month now, and you're always so helpful. Thank you for that. I just want to say thank you for all you do here.
I think we're going to go ahead and make an appointment with a neurologist and go ahead and get the head MRI - I think that's a good next step. The MRI makes me anxious though - that tube doesn't make me happy to think about!
I didn't even know there WAS a pituitary center.... time to do some more research!
Thanks! Prayers and positive energy for everyone to feel better... I'm so sorry you're going through so much. (gentle hugs)
Look to universities as they may have a pituitary center. Most endos treat diabetes and allegedly treat the thyroid... lol...
A lot of us have POTS. I do too - my BP stays low though so I am on florinef.
A typical crisis has BP dropping but I do know some where BP rises - so you are not alone! The doc must not know many with Addison's as there is typical, but alas, there are exceptions. Gatorade is not so great for the sugar, yeah. There are other low sugar electrolyte drinks in packets but I don't know the name. Salt tablets are also good as salt will raise K - and pickles work too. I love chips but that is bad so I had to stop.
CT of pituitary is useless! MRI is what is needed. It has to be a dynamic, and done well.
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