Wow what a mess. Sorry for all that. The cause could have been any high dose steroids from the cancers it just a random auto-immune disease. There are some sites that link thyroid and adrenals but frankly, most people I know have one or the other unless you have a pituitary issue or Schmidt's.
Hydrocortisone is the drug of choice. It will have the least side effects of all and the dex is a powerful med (I am on it now, taken both) and while nice to take one pill once a day it is way way way worse for your bones.
Your docs don't seems to have explained the whole process and also the importance of sodium. You may also need fludrocortisone which may help with some of your symptoms. Depression is an issue when your medications are not optimal. When and how and how much medication you take is very important. HC has to be taken carefully to mimic a normal body, dex has a long half life and can last up to three days (hence the bone eating properties).
Do you get copies of your tests? Do you need sodium. Have you tested vitamin d, iron and other minerals?
Dhea also helps some people feel better (look at papers) but not all.
How much dex are you taking and when do you take it?
Hi Rumpled, SO nice to talk with you again, and I appreciate your thoughtful response. I take .5mg of dex, and I take it in the morning... it was prescribed for bedtime, but it messed up my sleep. And yes, I get copies of my tests thru their office portal.
When I went back in March to the endo people, they told me to take 5000 Units of D3, three times a day for three months, and then just one of those a day, which right now I take two a day instead of three. I am smaller and sensitive to medicines of all kinds. Yesterday I went in, and I did not get a chance to look at your reply in time, had to take care of some chores right away. But I have osteopenia (the step just before osteoporosis, which my grandmother had... I drink TONS of milk, so this is a mystery to me, unless my adrenals have been goofed up since my early 50s (I'm 64 now) when I went through "the change."
I had a blood draw, they are going to check my electrolytes, and at my request the adrenal cortisol levels. I should be able to access that by the end of the week, I think. They will be checking potassium and sodium, among other things. I am not as fond of salty things as I was at one point during all this, and at some point last year my family doc asked me to take a potassium supplement (perhaps an early warning of the adrenal issue). I still have it, so I can take it if they ask me to.
The team told me that my answers to their questions indicated my adrenals seemed alright, and they weren't going to test them, but I wanted to know what they were. They said even if it was low, they were not going to increase the dose. Seeing >0.5 or whatever it is equaling the lowest, that really bothered me, scared me since I had been in a semi-coma the winter before last, they never figured out what was wrong with me, ye gads.
I would change to another drug, even go back to the hydro, but right now I am just SO SICK of being sick, I want this straight NOW. Actually, since I posted before, I had a couple very good mornings when I woke up, so whatever those terrors were have finally diminished, I think because of the extra anti-depressant and tranquilizer both finally kicked in.
I hope this answers everything. So, steroids will affect the adrenals... I will look up chemos and what is normally in them, I have no idea where my records are from 2011, and I'll see if the steroids did it, and I'll also check that other oddball psych medicine Remeron has in it, too. I recall, after getting six weeks almost daily of rads, they gave me Prednisone to make the burn not hurt so much, and I got off it within three weeks, was very hard to do it, but I did. However, that was 2013 and early 2014. I was diagnosed with he adrenal thing about midway 2014.... hmmmm, maybe that was it.
Rumpled, if a person has taken a round of Prednisone, I think that's a steroid, would that make me PERMANENTLY adrenal insufficient, or just for awhile? Thank you for everything you do to help people and help me here. GG
The chemo does not have steroids but they normally give steroids concurrently to reduce swelling and side effects.
If you are super sensitive to meds then the dose of pred, if high, may have done damage but normally it takes many doses, a high dose, or time. Or disease.
You could have had the underlying condition but we're borderline and the pred could have tossed you over.
My dose is .5 but I cut the pills in half as they got to be too much. I take the full pill when I get busy or stressed. I take it at night. It does take a while to kick in but does last a long time which is why you take it at night. It can take a bit to learn what works best. There is no one size fits all.
It will be interesting to see your test results.
Hi Rumpled! I am looking forward to my test results too. I had also taken a half pill, which the whole one was .5, of dexamethasone, which gave me that >0.5 adrenal cortisol reading, so I went to a whole pill about six weeks ago. I hope increasing it will help my levels improve.
I don't know what I was thinking, but I took the prednisone in late 2011, and then the adrenal thing began to happen 2013-14.
I'll come back when I get my labwork back. GG
Look forward to it...
You suppressed way down. I did the same. It can indicate pituitary source or to some docs, nothing is wrong.
I got my lab results back yesterday. My electrolytes, sodium and potassium, were fine. But my adrenal cortisol was STILL in the >0.5 range, which is where it's been all along. SIGH. If you'll recall, I changed my half-dose of dexamethasone to a whole pill, for six weeks b4 the test.
Now, my physician's assistant and doc both said they weren't going to make ANY changes this summer, my next appointment is in September. The doc said he thought my cortisol number was low because of the dex. I am assuming he means the dose isn't right or it's just not working. But Rumpled, I don't know how much more of these awful drugs I can keep taking!!!
To cope with side effects of dex, I'm already up to 350mg of Zoloft to stop the depression I have from back pain from a car wreck, and then this dex made it SO much worse, just really sad as can be, hopeless, dread. The 350mg is a high dose, by the way... they usually don't prescribe more. So, if they were to give me more dex, I don't know what I'll do. Hopefully I can persuade them to try something else. By the fall, I would be willing to do it. In the meantime, the side effects make me suffer, the drugs I use to stop pain and depression and panic disorder have all been increased because the dex makes all that worse.
I saw where cortisone acetate is another drug that helps low cortisol. Do you know anything about it? Do you get depressed with the dex? Any tips on coping? I will say this, my physician's assistant had already told me this, that my endo team is not going to change ANYTHING in my treatment for the summer.
I am familiar with many food or natural things that will help cortisol itself improve, and one was to eat more grapefruit (usually it's the other way around), plus a variety of other foods I often eat. They did say that the asthma sprays mimic cortisol...but I think they took all those inhalers off the shelf. I did find a neat "exercise" that helps adrenals function better... you put your hands on your kidneys and while in diff positions, you hum, and you can feel it go to the kidney/adrenals! Neat, huh?! If you know of anything easy to do, PLEASE let me know.
So, those are my lab results, which turned out to be no results at all. And really, except for this depression, I'm doing pretty good health-wise. And the depression is not constant, but I'll get a few good days and then some bad ones. I just switched from 300mg Zoloft to 350mg, felt really good, altho not particularly motivated, and thought maybe it was from the previous raising of the dose, so I went back down to 300mg. Within days, I went back up to 350 because I was so sad and miserable, and I'm beginning to do better today, at last. What side effects to you have to fool with, if any? SURELY there are drugs out there that are better.
In September, unless I read something bad about it, I'm going to ask for that cortisone acetate, see how I do with it. I mean, the dex isn't doing anything except making me feel all doom and gloom. Strange thing is, most of the time I don't have ANY of the symptoms of low cortisol, so makes me wonder. BUT from time to time, I have, so I think it kind of comes and goes. I really don't know. But I WON'T take any higher dose of dex again or it's bound to kill me, and I ain't kidding, neither.
Well, as usual I've gone on too long, but you have been such a big help to me, as well as a few others that drop in, so I want to get it all out so you can assist me better. Rumpled, thank you very much for your time and comfort for me. You are my lifeline!
Sorry for delay - got sick...
All the meds you mention - cortisone acetate and inhalers - are just other forms of steroids. They just have different half lives. Dex has a long long half life.
What the test a stim test?
If the dex is effecting you so badly, why not ask the doc for prednisone which is still long acting, but less long acting than dex and may hopefully reduce some of the symptoms, but still help you with the inflammation.
I turned frankly to acupuncture for relief from pain. It reduced the inflammation and helps me sleep. The cost of the sessions is a pain, but the relief is worth it to me. I have to go back to get the spasms out of my neck and back.
Just remember too that low and high cortisol have many of the same symptoms - so you may be bouncing from one to the other - and that can hurt a lot too - just adding to the pain.
Thanks so much, Rumpled, for coming back to me!
I had no idea that prednisone could be used to improve adrenal cortisone levels. Mine was a simple blood draw... I took my pill in the morning, and they drew blood mid-afternoon, putting a "PM" as the time.
I have taken prednisone before, it's a feel-good drug for me, but you have to go on it and off it periodically... but ANYTHING but this dex... I may not even make it thru the summer without making a change, even tho I was SO hoping I would not have to. But while I have the side effects basically in check, I have ZERO motivation, which at least when I took hydrocortisone, I felt more like doing things... it just depressed me something fierce.
I will consider acupuncture if my next drug change doesn't work well. Also, I appreciate you letting me know that procedure will help spasms and help sleep! That sleep thing is a problem sometimes, but I'm doing better by increasing the tranq I take for panic disorder.
Gosh, I've just been through SO much for SO long now, since 2011 when I got cancer... I can't remember how many times I've been in the hospital, nor all the things done to me or for what, it's been a real pain. Thank you, Rumpled, for helping me.
Hi Gail... (I am Jennifer)...
Look up a steroid calculator in a search engine. It can tell you what the doses are compared to hydro or dex etc and the half lives. You can use it faster or slower so it all depends on how sick you are and all sorts of stuff so I would ask the doc to either knock the dose back (even half the dex works out to be almost the same with the stacking of time!) or move to prednisone or see what you can do to moderate the side effects. There are hidden ones as well.
It may be the hydro was too low and too short acting... You may need to mix things up. Depression I know more as an effect of too much steroid. It is a classic symptom. Your body may not be absorbing things right. Some brands also are better. Quali-crud is very common and not very good. I also know some who are now taking liquid dex and doing better.
They are not quite the same. Also, have you any need for the mineralcortocosteroid ?
Thank you again for keeping me up-to-date on my meds, etc. You are really helping me with your tips.
I am pretty sure I'm going to ask the doc to go off the dex. It really bothered me that when I doubled the dose, that six weeks later my cortisol was still uber low. It's just a matter of when I'll go back, sooner or later.
I will look into the calculator thing and also the mineral cortosteroid. I am also thinking I'll either go back to the hydrocortisone I originally took, or try cortisone acetate, or prednisone... or if the doc has a new idea, I'll do that. I have gotten some control over nearly all my side effects with dex, except I am without motivation... and I don't feel like myself exactly.
All this has been so scary. If I go to the doc sooner than the fall, I'll let you know what happens. Again, thanks Jenn. Gail
Hi there. I was diagnosed w glucocorticoid insufficiency as well, however , I have a new endo who said my original endo did suppression tests wrong....so he is slowly taking me off the hydro and then planning to retest. I feel like crap BUT have noticed every morning at around seven a.m now I wake up feeling almost normal, it lasts for a couple hours before I totally tank. I am starting to think it was an over prescribing of steroids that caused my adrenal prob. Time will tell. Could be what happened to you? Also, certain meds mess with your hormones including cortisol. Opiate pain meds can screw up adrenals as well. I've heard chemo can burn them out too, hope it's that simple for you.....of course slowly lowering you cortisone has to be monitored VERY carefully, and it's definitely the way of pain during the lowering period. Good luck :0)
Thank you for contributing to my situation, it helps a lot. I was only on a short-term of steroids for the rad burn during my cancer treatments, but I do tend to think it's the chemo that did this since it's the closest major medical event to happen to me, despite what Jenn advised.
I don't think the opioid pain killers I take are doing it because I've been on them for about 15 years, for back pain from a near-fatal car wreck.
But now, the dexamethasone they give me for this adrenal problem is a steroid, as are some other medicine treatments available for this, and this worries me. Also, it worried me that my cortisol readings were STILL low even after doubling the dose of the dex. Also, as I have said, I just don't feel exactly right, a little on the negative side, but I CAN'T take any more antidepressant Zoloft because they don't normally prescribe more than 300mg, which I'm on 350mg right now!
Sick, I appreciate you warning me about how painful reducing the dex would be... so I'm thinking the doc will surely let me introduce the new medicine at the same time as I drop down on the other one, thus minimizing bad withdrawal symptoms. What do you think?
As for how YOU are feeling, if you will eat foods that help depression, that helps, which depression is probably what you're feeling the most as you go off your hydrocortisone. You can google it online, but three I eat all the time to help mine is grapefruit, blueberries, and eggs. There's lots more, those just happen to be the ones I like. There are grapefruit pieces in the canned fruit section in the grocery store, easiest to fool with, stick them in the refrigerator.
While I am concerned about how bad it's going to be to go off the dex, I have gone off the hydrocortisone before and felt AWFUL, even taking antidepressant medicine with it, too! But I didn't merge with another adrenal insufficiency medicine. I'm thinking I will go back to the hydrocortisone because it ups the amount of cortisol the adrenals put out, which I think should be the aim of fixing this medical problem.
Jenn, tell us what you think, too, and help out Sick with his concerns also!!!
It is true, weaning hurts like heck. They say it is akin to a serious narcotics withdrawal.
Hydrocortisone is a cortisol replacement... It suppresses the adrenal glands. In those with undiagnosed Cushing's however, it just adds fuel to the fire so to speak and can intensify symptoms. Any steroid can.
Sadly, there is no predicting how a body will react to a steroid. Some have no reaction except the lowering of inflammation. Others have the adrenals atrophy immediately and others rocket into Cushing's. It should be controlled better. It is a nasty drug.
Do you maybe have a suggestion of a mild medicine I might take for adrenal insufficiency? I made a fast doc appointment for this Thursday (it's Tues evening now), because I want to tell my endo doc how the dex has just become impossible to bear. I don't really care WHAT it is, hydrocortisone is just a guess because it was the first, but ANY drug, as long as it is mild with very few side effects, will do fine.
Also, I'm wondering if I could go off the dex at the same time as I go on the replacement drug? That's what I would normally do. It helps to overlap them, stalls the side effects both of withdrawal and of getting used to a new drug. Please come back to me!
The step down for dexamethasone would be prednisone. Then from prednisone to hc... you can go straight to dexamethasone to HC but it can hurt like heck so you may or may not be functional.
I was, post op pituitary crippled during the wean. I could literally not bring a load of laundry up a flight of stairs. Now post BLA, I can change doses like crazy fast and it is not nearly as painful - probably because I am not bathing in it from my tumor.
So, you can set up a schedule and wean off one and start the other. I used to alternate months on and off dex/HC so it can be done but the first few days I was pretty tired until I adjusted.
So expect pain and fatigue, but the other symptoms of insomnia and depression to lesson quite a bit - so you may have to adjust those meds when you adjust the dex.
I would do this slowly - and carefully - and drop down to the smallest dex dose you can tolerate before you wean - that will help as dex has a long half life.
Hey Jenn, well, I went to my endocrinologist, got to talk to the doc this time, and he listened very carefully to a short list of things I wanted to say, and he fixed everything the way I would have done it. Immediately went off the dex, and this morning started back up with hydrocortisone, the usual full dose. Then every three weeks, lower it by 1/2 until I'm off. I will go off quicker and start out smaller than he had written out for me. The reason I'm to go off the hydro is because I explained to him that, like my thyroid, I think this adrenal problem is like it, in that my hormones go slightly up and slightly down all the time, and since I was in the hospital when they took my cortisol, it appeared to be low, but for gosh sakes, I had just been in the hospital for two months, with no memory of the ordeal. So, we want to see if by going off the hydro slowly, my adrenals will return to a low normal, sufficient to not take meds, altho I'll go back to see them from time to time. And of course if I don't do well without the hydro and the tests show low cortisol as I go off, then he can keep me on the hydro. Also, you mentioned pain from withdrawal, and I appreciate it, but last year I had my docs add to my pain drugs and tranq drugs because of my reaction to the adrenal meds. So, hopefully the pain won't be too bad. It'll probably take until early next week before I begin to notice the dex is gone and the hydro is filling in. Figured you'd want to know!!! I'll keep you posted on how I do!!! GG
Whoa! This is some thing you do it want to rush...
If anything, you will need to go slower to wake up the adrenals not faster. Once you reach a certain level, it may hurt like crazy and you have to slow, bounce up and down a bit, and then slow up to get over the hump.
Keep us posted and I hope it does not hurt too much!
Thanks for coming back to me and for the advice.
As for the dose of hyro: All in the world that's going on is, and the doc forgot, is when I first took hydrocortisone, the dose was too high, they wouldn't agree to change it, so I had to. THAT's why I'm starting with less than he prescribed.
As for going faster: I respond very quickly and harshly to drugs, I'm sensitive to them, and so if I stay and stay like they want me to on a dose, every time I drop it, it'll actually be harder. So, I'm going for two weeks between dose changes instead of three. This also serves another purpose. My next appointment was going to wind up in the middle of going down on the hydro, but this way I'll see them a couple weeks after I'm completely off. The test will be accurate, as to how low or high I am with the cortisol.
As for pain: As I said in my post, I crushed my spine in a terrible car wreck, I was a passenger and we went down a ravine in the snow, EMT had to get us out, just like TV! I was in hospital two months, and I've been on pain meds for a long time. So, you see, I have two pain killers, one was just increased, so no pain should get me. I know how to deal with it, anyway.
But of course I am paying attention to what you say and will keep it in the front of my mind, in case I have any problems!
Good luck! Keep us posted.
Well, I been off the dex for a week, and on about 1/2 the dose of the hydrocortisone. (Nobody listens sometimes, and from the very start, I told them the dose was too strong to begin with...it turned me into a 25-year-old on a motorcycle. So, then they give me dex, which SUPPOSEDLY About a pushes 40 times the cortisol as the regular stuff...and thus why I repeat half the dose of the hydrocortisone.) Anyhow, I don't miss the dex AT ALL, my head, mood, and humanity cleared right up and I WAS NORMAL!!!
Anyhow, I'm still going to knock a week off the three-week slow-down, because I know how I am with drugs. Now, even tho there's a chance it MAY not jump-start the adrenals by producing its own cortisol, I think it would be worse for me to be on his drug very much longer. It was too strong before! Soooo, end of next week, I knock off 1/2 dose of the 1-1/2 (half dose) I was on at the beginning of this. I think since I feel really well, and my naps have returned (they stopped long while back), I'm probably going off the hydro at the correct pace.
No pain at all, by the way. I'm jusf feeling normal for a change! Well, we'll see what happens. Tha blood test in a few weeks will
Excellent. Yeah dex is a nasty drug. I take it and I am not happy with it at all... I would rather be on HC.
Sleep well and I hope you can get the lazy adrenals to wake up... With no pain... Keep us posted.