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Replacement Steroid
I would like to know how it is possible to know when is a good time to begin to taper from replacement steroids? (following an adrenalectomy and trying to stimulate the other adrenal gland to begin functioning again).
Is it a matter of time? That seems arbitrary.
Is it a matter of some test for cortisol level? Not sure if there are any tests that would be accurate while on a steroid replacement.
Also, in addition to the replacement steroid, currently Rx'd at 40 mg per day (20mg AM and 20mg early PM) should I ask for an emergency/stress steroid? Or is 40mg considered to be a stress level/amount because of the stress of surgery?
Is it a matter of time? That seems arbitrary.
Is it a matter of some test for cortisol level? Not sure if there are any tests that would be accurate while on a steroid replacement.
Also, in addition to the replacement steroid, currently Rx'd at 40 mg per day (20mg AM and 20mg early PM) should I ask for an emergency/stress steroid? Or is 40mg considered to be a stress level/amount because of the stress of surgery?
sorry to be a pest, but I have another question in addition to my previous post.
If 20-30 mg HC/day is approximately what a person would normally produce, would taking that amount affect a person's immune system? I've read taking a steroid could depress your immune system. But I wonder if taking a replacement dose, at the right amount, would depress your immune system?
If 20-30 mg HC/day is approximately what a person would normally produce, would taking that amount affect a person's immune system? I've read taking a steroid could depress your immune system. But I wonder if taking a replacement dose, at the right amount, would depress your immune system?
Thanks.
I was hoping, too, that with the adrenal tumor gone, I would have less anxiety. That seems unchanged so far, or maybe it's even increased a bit. I had a strong, fast, resting heart rate for most of the evening last night (around 90BPM) and that seemed unusual.
It could be the HC, but I'm only around 30mg/day, that doesn't seem too high. Maybe it's too low if I'm under physical stress from surgery? But that was a week ago, I should be ok now.
Or it could be that I am being hypervigilent to signs that I've not taken enough of the HC, and therefore I'm giving myself anxiety and that causes the fast heart rate.
The extra anxiety could also explain why I've started to feel some tingling in my upper lip and left arm and leg. Or could that be the HC too?. It's so weird to try and monitor all these different things I'm now feeling.
I know you've said my right adrenal would be suppressed if I were taking HC, but is there any chance that it could be secreting normally and then on top of it I'm adding HC to my system?
It probably sounds like a bit of a reach, but just a thought.
I wouldn't fall into a crisis if I'm taking a sufficient amount of HC per day would I? That seems a bit of a reach too. It must be anxiety. I sound like I'm anxious after reading this.
I was hoping, too, that with the adrenal tumor gone, I would have less anxiety. That seems unchanged so far, or maybe it's even increased a bit. I had a strong, fast, resting heart rate for most of the evening last night (around 90BPM) and that seemed unusual.
It could be the HC, but I'm only around 30mg/day, that doesn't seem too high. Maybe it's too low if I'm under physical stress from surgery? But that was a week ago, I should be ok now.
Or it could be that I am being hypervigilent to signs that I've not taken enough of the HC, and therefore I'm giving myself anxiety and that causes the fast heart rate.
The extra anxiety could also explain why I've started to feel some tingling in my upper lip and left arm and leg. Or could that be the HC too?. It's so weird to try and monitor all these different things I'm now feeling.
I know you've said my right adrenal would be suppressed if I were taking HC, but is there any chance that it could be secreting normally and then on top of it I'm adding HC to my system?
It probably sounds like a bit of a reach, but just a thought.
I wouldn't fall into a crisis if I'm taking a sufficient amount of HC per day would I? That seems a bit of a reach too. It must be anxiety. I sound like I'm anxious after reading this.
A crisis is something like a panic attack - agreed! In fact, they may have been related as your adrenals do help in stress area so maybe things might change a bit there.
The quickie path in the operating room is always benign vs malignant. That is all I was told for my pit tumor too - and I had to wait for all the stains etc.
Pituitary involvement changes the size of the overall adrenal, making it larger. One of mine of was nodular, but both were large. BTW just because there is a link to that page does not mean you can't use the arrows to look at the other pages - I think there is a tumor lurking around on another one!
The quickie path in the operating room is always benign vs malignant. That is all I was told for my pit tumor too - and I had to wait for all the stains etc.
Pituitary involvement changes the size of the overall adrenal, making it larger. One of mine of was nodular, but both were large. BTW just because there is a link to that page does not mean you can't use the arrows to look at the other pages - I think there is a tumor lurking around on another one!
Thank you for the heads up.
I will be on the look out for adrenal crises, and because it is the weekend, I may not taper more until Monday. It will be tricky, because some of the signs of crises are those that I experience with a panic attack. Right now I am feeling rather anxious. That always makes me feel light-headed, a little confused, queasy and weak. Geez, that will be hard to differentiate from onset of adrenal crises.
I have not yet requested the path report, I was going to wait until after the endo appointment, and then when she said the cell function wasn't determined yet, I decided to wait.
But I have a suspicion that, at least the portion/cells initially tested (if they were tested) were determined to be non-secreting. I think the endo then asked the pathologist to section/slice all through the tumor/gland and test again.
That would explain why the endo described all the different zones of the cortex to me and that each zone secreted different things. That level of detail seemed unusual to provide, after the fact. Through lab testing, only cortisol was found to be high, and that wasn't all the time. The test that the endo was stead-fast on and based the surgery recommendation was my final dex suppression. I suppressed to 2.4 and she said that proved excess because I HAD to, HAD to, be below 1.8 no matter what.
It doesn't really matter any more. It's out and gone. And, while no one can be really sure, growth to over 6cm seems to be a hallmark for turning malignant. I don't know if that means a benign tumor would become malignant, but my tumor was 4.6cm, so why wait and guess.
I did look through the health pages, did you mean the link to the pictures of adrenal pathology? I do know that my tumor was described as being very well circumscribed, smooth, and had homogeneous cells. It was not lumpy bumpy or nodular. Does pituitary involvement affect the look?
I will be on the look out for adrenal crises, and because it is the weekend, I may not taper more until Monday. It will be tricky, because some of the signs of crises are those that I experience with a panic attack. Right now I am feeling rather anxious. That always makes me feel light-headed, a little confused, queasy and weak. Geez, that will be hard to differentiate from onset of adrenal crises.
I have not yet requested the path report, I was going to wait until after the endo appointment, and then when she said the cell function wasn't determined yet, I decided to wait.
But I have a suspicion that, at least the portion/cells initially tested (if they were tested) were determined to be non-secreting. I think the endo then asked the pathologist to section/slice all through the tumor/gland and test again.
That would explain why the endo described all the different zones of the cortex to me and that each zone secreted different things. That level of detail seemed unusual to provide, after the fact. Through lab testing, only cortisol was found to be high, and that wasn't all the time. The test that the endo was stead-fast on and based the surgery recommendation was my final dex suppression. I suppressed to 2.4 and she said that proved excess because I HAD to, HAD to, be below 1.8 no matter what.
It doesn't really matter any more. It's out and gone. And, while no one can be really sure, growth to over 6cm seems to be a hallmark for turning malignant. I don't know if that means a benign tumor would become malignant, but my tumor was 4.6cm, so why wait and guess.
I did look through the health pages, did you mean the link to the pictures of adrenal pathology? I do know that my tumor was described as being very well circumscribed, smooth, and had homogeneous cells. It was not lumpy bumpy or nodular. Does pituitary involvement affect the look?
Yeah the um, short on patience thing is a sign... lol...
You are on over 20mg, so your other adrenal is suppressed too - how does she know it is working? Usually one does a stim test at some point... your taper will be fine until you go below 20 or 15, then one usually *hits a wall* so to speak - while you are tapering kinda quick now, once you get below where the other adrenal has to wake up, you need to do so gently, or it may not do so with um... well, it may not be so happy. Weaning also can be quite painful.
I know my adrenals were quite enlarged and nodular and that was the pituitary going at it night and day. So, yes, there can be a distinctive look to the adrenal - I thought I posted that in the health pages, if not, I will put the adrenal pathology there.
It would not be the first time I was wrong but SHEEZ - what else are they supposed to do in pathology but figure out what the heck it is and part of that since it is a gland/tumor/nodule is to figure out if it is secreting or not!!! That just seems silly to me...
Be aware of the symptoms now that you are tapering and make sure those around you know it too. You will only have one adrenal... I would have thought you needed precautions for a while until you are stable!
You are on over 20mg, so your other adrenal is suppressed too - how does she know it is working? Usually one does a stim test at some point... your taper will be fine until you go below 20 or 15, then one usually *hits a wall* so to speak - while you are tapering kinda quick now, once you get below where the other adrenal has to wake up, you need to do so gently, or it may not do so with um... well, it may not be so happy. Weaning also can be quite painful.
I know my adrenals were quite enlarged and nodular and that was the pituitary going at it night and day. So, yes, there can be a distinctive look to the adrenal - I thought I posted that in the health pages, if not, I will put the adrenal pathology there.
It would not be the first time I was wrong but SHEEZ - what else are they supposed to do in pathology but figure out what the heck it is and part of that since it is a gland/tumor/nodule is to figure out if it is secreting or not!!! That just seems silly to me...
Be aware of the symptoms now that you are tapering and make sure those around you know it too. You will only have one adrenal... I would have thought you needed precautions for a while until you are stable!
Well, it seems I am going to go on a speedy taper!
I just saw the endo Wednesday, and she said she had to ask the pathologist specifically to stain the cells to check for secretion, so I thought that was odd in light of the fact that you said they do that automatically.
Then she went into a long explanation that the cortex of the adrenal is divided into different zones, each secreting something different yadda yadda and you have to take/test cells from each zone to know for sure. Bottom line, the report will be complete next week.
She even told me, and I thought that was a bit unusual to reveal her conversation, that the pathologist questioned pituitary involvement.
But her answer back, and to me again, was that there was absolutely no chance. (based on one ACTH test ((that I'm pretty sure they did correctly)) ).
In the mean time I am to try 20mg/10mg for 2 days, 10mg/10mg for 2 days, 10mg/5mg for 2 days and 5mg/5mg for two days and then stop and by that time the results of the report should be available.
Her reasoning is that if the tumor was not secreting then my right adrenal gland was, and is, already functioning and I shouldn't need HC. So I should try to taper as quickly as possible.
But even if the tumor was secreting she thinks getting the right adrenal back to functioning is the best course so again, a quick taper would do that.
The funny thing is this: She said if the tumor was not secreting, we'd have to investigate other causes for my symptoms. I just about fell out of the chair. I DON"T have any symptoms. If they hadn't found the tumor on CT scan, I wouldn't have had all this testing for 6 months and this surgery.
I'm actually hoping the report will show secreting, otherwise I'll feel like all of this was for not. I'm a little skeptical right now, maybe that's the HC, I've been feeling pretty good but I'm starting to notice I'm getting short on patience.
ps, she doesn't think I need any emergency fall-back, med-bracelet or anything because the right adrenal is, or will soon be, fully functioning and will function to meet all stress situations. I think at least a letter in my purse stating I have only one adrenal gland would be a safeguard in the event I'm in any type of accident that I'm unconscious so the ER responders would have that information. What do you think?
I just saw the endo Wednesday, and she said she had to ask the pathologist specifically to stain the cells to check for secretion, so I thought that was odd in light of the fact that you said they do that automatically.
Then she went into a long explanation that the cortex of the adrenal is divided into different zones, each secreting something different yadda yadda and you have to take/test cells from each zone to know for sure. Bottom line, the report will be complete next week.
She even told me, and I thought that was a bit unusual to reveal her conversation, that the pathologist questioned pituitary involvement.
But her answer back, and to me again, was that there was absolutely no chance. (based on one ACTH test ((that I'm pretty sure they did correctly)) ).
In the mean time I am to try 20mg/10mg for 2 days, 10mg/10mg for 2 days, 10mg/5mg for 2 days and 5mg/5mg for two days and then stop and by that time the results of the report should be available.
Her reasoning is that if the tumor was not secreting then my right adrenal gland was, and is, already functioning and I shouldn't need HC. So I should try to taper as quickly as possible.
But even if the tumor was secreting she thinks getting the right adrenal back to functioning is the best course so again, a quick taper would do that.
The funny thing is this: She said if the tumor was not secreting, we'd have to investigate other causes for my symptoms. I just about fell out of the chair. I DON"T have any symptoms. If they hadn't found the tumor on CT scan, I wouldn't have had all this testing for 6 months and this surgery.
I'm actually hoping the report will show secreting, otherwise I'll feel like all of this was for not. I'm a little skeptical right now, maybe that's the HC, I've been feeling pretty good but I'm starting to notice I'm getting short on patience.
ps, she doesn't think I need any emergency fall-back, med-bracelet or anything because the right adrenal is, or will soon be, fully functioning and will function to meet all stress situations. I think at least a letter in my purse stating I have only one adrenal gland would be a safeguard in the event I'm in any type of accident that I'm unconscious so the ER responders would have that information. What do you think?
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Even though HC has a short half life - your body is, or rather a normal body, is used to and wants some down time from steroids. That is when the body repairs itself - makes bone, repairs muscle etc. That is why HC is healthier then say, pred which lasts all day and all night - and causes more side effects.
A normal body has the greatest amount in the morning and really tapers down during the day and has little in the evening so you can sleep.
I take all my dose at once in the morning. Keep an eye on the salt though things may change now.
Congrats on the benign!!! Yippee!!! Are they going to confirm if it is hormone secreting or not?