Aa
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?
I would hope another 3 weeks would be it ... but my point of reference is post op pituitary where you have to wean down too to wake the adrenals and I remember it being so much fun... it varied in people as some could just wean off in a matter of a month or so (I don't recall any of us having to wean in weeks unless it was demonstrated surgery was a failure aka you were still producing cortisol) just so you got the adrenals up and running right. Some people took years which struck me as kinda well - bite the bullet and get off even though yeah, it hurts. I got super sick my first wean, infection, needed another surgery so I had to wean twice (joy!!!) so it took me longer. Just love my immune system.
It is weird that when you are swelling, you have to drink more - but it works. I used to have wild edema. Now I still get it from time to time... mostly if I have to travel - the lovely medical vacations lol...
At least you have lots of extra med and what am I thinking 5mg should not keep you up at night unless you are sensitive... duh... there are some that need a boost of 2.5 at night to sleep (not me!)...
It is weird that when you are swelling, you have to drink more - but it works. I used to have wild edema. Now I still get it from time to time... mostly if I have to travel - the lovely medical vacations lol...
At least you have lots of extra med and what am I thinking 5mg should not keep you up at night unless you are sensitive... duh... there are some that need a boost of 2.5 at night to sleep (not me!)...
thank you for your response.
I am not really sure how much time to give this whole process. I probably am rushing things. Just my nature, or maybe that was the adrenal tumor. Endo gave me an RX for three months of HC, so 3 weeks is probably unrealistic.
I don't seem to have any problem sleeping when I take HC. In fact, I seem to be sleeping better, even when I was taking higher doses.. I took 5mg HC Thursday afternoon, had a nap and I slept like a rock last night. Heaven.
The swelling in extremities is much better, back to normal today. My abdominal "girth" seems to go up and down daily. I think that is swelling too. Today it is up. But I have lost almost 5 pounds this week. Maybe that is from not taking HC for a couple of those days. Maybe drinking more water has caused me to not retain it. There seem to be so many variables.
I'll continue to monitor my symptoms, the most evident seems to be feeling off kilter, a teeny bit dizzy/spacey, and that's my cue to take some salt and water.
I asked about retesting, and the endo just said, we'll see how your symptoms are after you taper again and go off HC for a couple of days.
I am not really sure how much time to give this whole process. I probably am rushing things. Just my nature, or maybe that was the adrenal tumor. Endo gave me an RX for three months of HC, so 3 weeks is probably unrealistic.
I don't seem to have any problem sleeping when I take HC. In fact, I seem to be sleeping better, even when I was taking higher doses.. I took 5mg HC Thursday afternoon, had a nap and I slept like a rock last night. Heaven.
The swelling in extremities is much better, back to normal today. My abdominal "girth" seems to go up and down daily. I think that is swelling too. Today it is up. But I have lost almost 5 pounds this week. Maybe that is from not taking HC for a couple of those days. Maybe drinking more water has caused me to not retain it. There seem to be so many variables.
I'll continue to monitor my symptoms, the most evident seems to be feeling off kilter, a teeny bit dizzy/spacey, and that's my cue to take some salt and water.
I asked about retesting, and the endo just said, we'll see how your symptoms are after you taper again and go off HC for a couple of days.
Well, to my thinking your body has barely healed if at all and the poor abused adrenal (and they are super lazy once sleeping imho) now has to wake up from its nice slumber after the other one was doing all the work and then some...
Alas, the more cortef you take, the lazier it gets so it is good you are not on a full replacement but I don't get the pm thing - why does she not want you to sleep???
Is she going to test you again to make sure the uni-drenal comes up to par?
At least you are on top of your symptoms so you know to add which is great. How is the swelling?
Alas, the more cortef you take, the lazier it gets so it is good you are not on a full replacement but I don't get the pm thing - why does she not want you to sleep???
Is she going to test you again to make sure the uni-drenal comes up to par?
At least you are on top of your symptoms so you know to add which is great. How is the swelling?
I did look at reference range of an old lab report I had.
Cortisol range for 8am is 5-23 ug/DL, and it does say post stim > 2times 8am measurement.
So again, Endo isn't following tests as they are constructed.
Although, I guess if my right adrenal were "asleep" this whole time, it may be slow to wake up. Maybe 3 weeks post surgery isn't long enough to do that.
Cortisol range for 8am is 5-23 ug/DL, and it does say post stim > 2times 8am measurement.
So again, Endo isn't following tests as they are constructed.
Although, I guess if my right adrenal were "asleep" this whole time, it may be slow to wake up. Maybe 3 weeks post surgery isn't long enough to do that.
Well it's been a bit of a roller coaster ride since my stim test on Tuesday.
I did take 5mg of HC on Tuesday afternoon and felt a bit better. On Wednesday I thought I felt pretty good, 0mg HC. Kept well hydrated for sure.
Today, Thursday morning I thought I was feeling great.
Then just as soon as I was done thinking this was all behind me, in an instant, I was grabbing onto something so as not to fall out of my chair. My head felt like it was expanding like a balloon and I was wondering simultaneously if it was going to explode and whether or not my heart had stopped. Then my head cleared. I didn't lose consciousness, but nearly so. I took 5mg of HC and felt spaced the whole morning. My BP was 100/58, low for me.
I took another 5mg at mid-day, had a nap, and BP rose to 118/62, which is closer to normal for me (120/72). Felt better too, but still feeling wiped out and a little woosey.
Endo just called, and read the results of the lab tests to me. She said baseline cortisol at 8am was 13 (I believe the range is 5-19 but I don't have report in hand) so I thought that was pretty good.
However, she said the next two measurements after stim were 15 and 19 and I thought it was supposed to double.
She said no, that is not true, that was only a generality. She said she looks for response, and I showed response. She said that she would have preferred the second measurement (at 60minutes) to be closer to 20 or 22, but she is confident my right adrenal gland is functioning because that cortisol is all me. But that the adrenal is definitely sluggish and to give it more time to reach normal.
Which means continue taking a little bit of HC each day and then try tapering again in a few days.. I think that is a good recommendation based on my BP and feeling like crap. She recommended 5mg am, and pm. I think that is appropriate. Seems like I need a little until my right adrenal can up regulate. I guess, after all, it hasn't needed to produce much if any cortisol until now, and while it may be low, it is producing something.
So just curious as to your opinion also, both on the lab results and continued use of HC. Is it too soon to expect full function of my adrenal gland, and the million dollar question, will I achieve it.
I did take 5mg of HC on Tuesday afternoon and felt a bit better. On Wednesday I thought I felt pretty good, 0mg HC. Kept well hydrated for sure.
Today, Thursday morning I thought I was feeling great.
Then just as soon as I was done thinking this was all behind me, in an instant, I was grabbing onto something so as not to fall out of my chair. My head felt like it was expanding like a balloon and I was wondering simultaneously if it was going to explode and whether or not my heart had stopped. Then my head cleared. I didn't lose consciousness, but nearly so. I took 5mg of HC and felt spaced the whole morning. My BP was 100/58, low for me.
I took another 5mg at mid-day, had a nap, and BP rose to 118/62, which is closer to normal for me (120/72). Felt better too, but still feeling wiped out and a little woosey.
Endo just called, and read the results of the lab tests to me. She said baseline cortisol at 8am was 13 (I believe the range is 5-19 but I don't have report in hand) so I thought that was pretty good.
However, she said the next two measurements after stim were 15 and 19 and I thought it was supposed to double.
She said no, that is not true, that was only a generality. She said she looks for response, and I showed response. She said that she would have preferred the second measurement (at 60minutes) to be closer to 20 or 22, but she is confident my right adrenal gland is functioning because that cortisol is all me. But that the adrenal is definitely sluggish and to give it more time to reach normal.
Which means continue taking a little bit of HC each day and then try tapering again in a few days.. I think that is a good recommendation based on my BP and feeling like crap. She recommended 5mg am, and pm. I think that is appropriate. Seems like I need a little until my right adrenal can up regulate. I guess, after all, it hasn't needed to produce much if any cortisol until now, and while it may be low, it is producing something.
So just curious as to your opinion also, both on the lab results and continued use of HC. Is it too soon to expect full function of my adrenal gland, and the million dollar question, will I achieve it.
There could be some rebound from the stim - after all, it was supposed to stress your body.
Take it easy (or at least I hope you did)...
I have no adrenals AT ALL and I went off all my HC for testing, under strict supervision, for 8 days and I was fine... so it is very possible to function for a while without HC as long as you are not sick etc.
It was not the greatest feeling though... but that could have been that I was testing every 4 hours day and night so sleep was a huge issue. And my room-mate was funny...
Take it easy (or at least I hope you did)...
I have no adrenals AT ALL and I went off all my HC for testing, under strict supervision, for 8 days and I was fine... so it is very possible to function for a while without HC as long as you are not sick etc.
It was not the greatest feeling though... but that could have been that I was testing every 4 hours day and night so sleep was a huge issue. And my room-mate was funny...
Yikes, I don't know what happened, but this afternoon I feel like ***t.
Is there a rebound effect from the stim test?
I'd swear I was having a hot flash, but I also had a bit of dizziness and felt a little queasy. So I took 5mg of HC, I feel a little bit better but not much. I'm wiped out, the same way I would feel after a really bad, long panic attack. ughhh.
Is there a rebound effect from the stim test?
I'd swear I was having a hot flash, but I also had a bit of dizziness and felt a little queasy. So I took 5mg of HC, I feel a little bit better but not much. I'm wiped out, the same way I would feel after a really bad, long panic attack. ughhh.
Well, I just finished the stim test this morning, therefore I should know the results in a couple of days.
By the way, I took 5mg of HC on Sunday, 0mg on Monday, took the test Tuesday morning, so any cortisol present should definitely be ALL me.
If there were a problem or deficiency, I think I'd have more symptoms without HC. So by not taking it, and feeling fairly good, I think that means my right adrenal is functioning again.
The results will tell the true story of course.
By the way, I took 5mg of HC on Sunday, 0mg on Monday, took the test Tuesday morning, so any cortisol present should definitely be ALL me.
If there were a problem or deficiency, I think I'd have more symptoms without HC. So by not taking it, and feeling fairly good, I think that means my right adrenal is functioning again.
The results will tell the true story of course.
Yeah for the stim test you are supposed to fast and I think my doc said (it may have been another stim test) not to do a lot of physical activity the day before.
If you have not been nauseous or anything - that is great. The low BP is cruddy - but do make sure you have enough water. Water itself can help raise BP...
You can't do just an 8am test as cortisol can vary and a point in time test can miss. The stim puts the adrenals under stress so will tell the doc if you can be off meds for sure. The test is not the most pleasant - make sure someone takes you there and home but most are ok, some can get sick just from the stress agents (after all, they are stressing the body). They differ in agents now - some use glucagon, some use other agents.
If you have not been nauseous or anything - that is great. The low BP is cruddy - but do make sure you have enough water. Water itself can help raise BP...
You can't do just an 8am test as cortisol can vary and a point in time test can miss. The stim puts the adrenals under stress so will tell the doc if you can be off meds for sure. The test is not the most pleasant - make sure someone takes you there and home but most are ok, some can get sick just from the stress agents (after all, they are stressing the body). They differ in agents now - some use glucagon, some use other agents.
This thought just came to me, wouldn't it be sufficient to have just an 8am serum cortisol test to determine if my right adrenal was functioning?
If I didn't have any HC since the morning before at 6am, and then just a small dose at that (5mg), wouldn't the serum test 26 hours later be all internally produced cortisol? And wouldn't that be sufficient to show function.
I was just curious as to whether I really needed the stim test. If I really don't have to take it, I'd probably prefer not to, aren't there side-effects?
If I didn't have any HC since the morning before at 6am, and then just a small dose at that (5mg), wouldn't the serum test 26 hours later be all internally produced cortisol? And wouldn't that be sufficient to show function.
I was just curious as to whether I really needed the stim test. If I really don't have to take it, I'd probably prefer not to, aren't there side-effects?
Just a quick update. No results back yet from the path report on tumor secreting status. Maybe I will have that information on Monday, but it won't matter one way or the other. I'm going to do a stim test monday morning.
The endo doesn't think I'm in any danger of adrenal crisis and agrees that I can continue to taper. I'm not sure why she is so positive, but I have to trust that I would have far more symptoms if my body was struggling with this.
So today I took 10mg this morning and skipped the afternoon. I'll try the same Saturday and maybe drop to 7.5mg on Sunday morning just to make sure I'm not going to crash on Sunday.
I'm feeling pretty good so far, but I have forced myself not to do anything taxing. And I'm watching for ANY change. I've got my fingers crossed for Monday.
But gee-whiz, you really have to watch these doctors. I asked if I should fast for the test and she said no it didn't matter either way. But later on I checked. The test says you should fast. Go figure.
The endo doesn't think I'm in any danger of adrenal crisis and agrees that I can continue to taper. I'm not sure why she is so positive, but I have to trust that I would have far more symptoms if my body was struggling with this.
So today I took 10mg this morning and skipped the afternoon. I'll try the same Saturday and maybe drop to 7.5mg on Sunday morning just to make sure I'm not going to crash on Sunday.
I'm feeling pretty good so far, but I have forced myself not to do anything taxing. And I'm watching for ANY change. I've got my fingers crossed for Monday.
But gee-whiz, you really have to watch these doctors. I asked if I should fast for the test and she said no it didn't matter either way. But later on I checked. The test says you should fast. Go figure.
I have swollen ankles, they look nad feel like tree trunks, my neck and face seem puffy, like a cushy face, my middle is definitely bigger!
I have been eating a ton of salt, because of the low blood pressure. But I have been drinking more water. Maybe with all the salt I still need more water. It could be the salt making me retain water. I'll keep monitoring my BP and maybe cut back on the salty stuff.
I did ok on 15mg Thursday. I'm going to try the same today.
I see the endo today, and I should know if the pathology report confirms whether the tumor was secreting extra cortisol. If it was not (ughh), then my right adrenal would have been working all along and would have only been suppressed while I was on 50, 40, 30mg HC. If my right adrenal returned to functioning when I got below 20mg, then it's probably the HC I'm taking now that is making me feel like a bowling ball.
Or, it might be PMS to top it all off, but its the WORST swelling and tenderness there that I have ever felt my entire life. ahhhhhhhh
I have been eating a ton of salt, because of the low blood pressure. But I have been drinking more water. Maybe with all the salt I still need more water. It could be the salt making me retain water. I'll keep monitoring my BP and maybe cut back on the salty stuff.
I did ok on 15mg Thursday. I'm going to try the same today.
I see the endo today, and I should know if the pathology report confirms whether the tumor was secreting extra cortisol. If it was not (ughh), then my right adrenal would have been working all along and would have only been suppressed while I was on 50, 40, 30mg HC. If my right adrenal returned to functioning when I got below 20mg, then it's probably the HC I'm taking now that is making me feel like a bowling ball.
Or, it might be PMS to top it all off, but its the WORST swelling and tenderness there that I have ever felt my entire life. ahhhhhhhh
I used to be able to test by taking a morning dose, skipping the afternoon, testing in the morning and then taking the dose right after.
About the gain - do you have edema at all? It could be that the other adrenal has already kicked in. At 15mg, you are by most accounts at the level where the other adrenal should start waking up. It is odd though that you would gain at low levels and not high levels - puffy is usually water. It means oddly you need more water! Your body is holding and does not want to let go. If this is water...It is so hard to say. Just keep tapering and you should level out. The changes are hard of the body.
My levels were only mild but my symptoms were not...so tests do not always correlate! Do keep an eye on symptoms but you seem to be doing really well!
About the gain - do you have edema at all? It could be that the other adrenal has already kicked in. At 15mg, you are by most accounts at the level where the other adrenal should start waking up. It is odd though that you would gain at low levels and not high levels - puffy is usually water. It means oddly you need more water! Your body is holding and does not want to let go. If this is water...It is so hard to say. Just keep tapering and you should level out. The changes are hard of the body.
My levels were only mild but my symptoms were not...so tests do not always correlate! Do keep an eye on symptoms but you seem to be doing really well!
I hope this doesn't confuse the questions of my first post today, but I just thought of another.....
if I am rapidly gaining weight, (I'm up 5 pounds from Sunday, 3 of those in the last two days), and I am puffy all over, ankles, knees, wrists, neck, does this mean I am taking too much HC, above what I would need for replacement?
I kind of thought that if I were at the right amount for replacement, that weight wouldn't be an issue, that it would only be an issue if I were taking too much.
It's curious to me, that even while I am tapering, I'm putting on weight. So I wonder if I need HC at any amount--that is I wonder if my right adrenal gland has been functioning all along, even with the left adrenal tumor.
Since I was low normal on one 8am serum cortisol, and I maintained diurnal rhythm as measured by one midnight salivary swab, and all the other tests were mildly high, maybe my right adrenal was working when the left wasn't over-secreting?
Or maybe the weight gain is from the low BP? This morning I'm 118/72, which is closer to normal for me.
if I am rapidly gaining weight, (I'm up 5 pounds from Sunday, 3 of those in the last two days), and I am puffy all over, ankles, knees, wrists, neck, does this mean I am taking too much HC, above what I would need for replacement?
I kind of thought that if I were at the right amount for replacement, that weight wouldn't be an issue, that it would only be an issue if I were taking too much.
It's curious to me, that even while I am tapering, I'm putting on weight. So I wonder if I need HC at any amount--that is I wonder if my right adrenal gland has been functioning all along, even with the left adrenal tumor.
Since I was low normal on one 8am serum cortisol, and I maintained diurnal rhythm as measured by one midnight salivary swab, and all the other tests were mildly high, maybe my right adrenal was working when the left wasn't over-secreting?
Or maybe the weight gain is from the low BP? This morning I'm 118/72, which is closer to normal for me.
I am going more slowly on the taper than what the endocrinologist recommended, I decided to reduce HC by 2.5mg every other day instead of 10mg.
I seemed to do ok from 25 to 20, and again, I seemed ok from 20 to 17.5mg.
On Wednesday I took 12.5mg in the AM and felt pretty crappy during the middle morning. My BP was 100/60 so I started to eat salt and drink lots of water and seemed to feel better in a couple of hours, and my BP increased to 112/68. I took 2.5 mg in the middle afternoon for a total of 15mg on Wednesday.
Today, Thursday, I do feel more joint pain, my back and knees hurt. But I am still going to try for 15mg total for the day.
I really want to get to a point where I can test to see if my right adrenal gland is functioning and I don't think I can do that until I am completely off of HC. Is that correct? Or is there a possibility that I can take HC in the early AM, none in the afternoon, and then test the next day in the AM? If it lasts approximately 24 hrs, the next days cortisol level should be all me. Is that accurate?
But my biggest question is, should I be concerned about adrenal crises while I am still taking HC? Or maybe put a different way, if I am reducing HC at what amount should I become concerned ? I'm worried because it is becoming difficult to separate the effects of anxiety from what could be considered the onset of a crisis, and with the weekend approaching, I just want to be sure.
My BP pressure has never been below 110/70 so that is a concern for me and I know that is not related to anxiety.
I seemed to do ok from 25 to 20, and again, I seemed ok from 20 to 17.5mg.
On Wednesday I took 12.5mg in the AM and felt pretty crappy during the middle morning. My BP was 100/60 so I started to eat salt and drink lots of water and seemed to feel better in a couple of hours, and my BP increased to 112/68. I took 2.5 mg in the middle afternoon for a total of 15mg on Wednesday.
Today, Thursday, I do feel more joint pain, my back and knees hurt. But I am still going to try for 15mg total for the day.
I really want to get to a point where I can test to see if my right adrenal gland is functioning and I don't think I can do that until I am completely off of HC. Is that correct? Or is there a possibility that I can take HC in the early AM, none in the afternoon, and then test the next day in the AM? If it lasts approximately 24 hrs, the next days cortisol level should be all me. Is that accurate?
But my biggest question is, should I be concerned about adrenal crises while I am still taking HC? Or maybe put a different way, if I am reducing HC at what amount should I become concerned ? I'm worried because it is becoming difficult to separate the effects of anxiety from what could be considered the onset of a crisis, and with the weekend approaching, I just want to be sure.
My BP pressure has never been below 110/70 so that is a concern for me and I know that is not related to anxiety.
It was a Canadian study! So I have no idea, I know most of it is complete.
6 days! Wow that is pretty aggressive. Yes, the pain is hitting the wall. Mine got so bad that I could not walk up the stairs or sleep or move. Spacey... I don't remember that. I know I am know but not then.
There is a community here to post recipes. I will look for yours!
6 days! Wow that is pretty aggressive. Yes, the pain is hitting the wall. Mine got so bad that I could not walk up the stairs or sleep or move. Spacey... I don't remember that. I know I am know but not then.
There is a community here to post recipes. I will look for yours!
Your first hand experience is so valuable to me, thank you. That study will be an interesting one to read. Do you know in what journal it will be published?
It is an art and science to replacement. I think I will take many more days to experiment than what the endo suggested. Her schedule was 6 days and then I would be off HC.
I can tell you that yesterday, I tapered (only 5mg to 25mg) and I began to have some middle back pain, really the first joint pain, or any pain, since the surgery.
I just chalked it up to being in the kitchen all day, cooking. But before you say I should take it easy, hee hee, cooking is something I love to do and it wasn't that strenuous. Still the back pain did register as being something new and different.
Is that what you mean by hitting the wall and feeling more pain? That I will start feeling joint pain all over?. My biggest concern up to this point is that I feel quite spacey in the morning and I thought that was the taper from 50mg to 40mg to 30mg.. The endo said it was probably still the anesthetic from surgery, but that doesn't seem right.
I'll keep a close watch on my heart rate now that I'm down to 25mg/day. I have been eating saltier foods, and drinking plenty of water!
It is an art and science to replacement. I think I will take many more days to experiment than what the endo suggested. Her schedule was 6 days and then I would be off HC.
I can tell you that yesterday, I tapered (only 5mg to 25mg) and I began to have some middle back pain, really the first joint pain, or any pain, since the surgery.
I just chalked it up to being in the kitchen all day, cooking. But before you say I should take it easy, hee hee, cooking is something I love to do and it wasn't that strenuous. Still the back pain did register as being something new and different.
Is that what you mean by hitting the wall and feeling more pain? That I will start feeling joint pain all over?. My biggest concern up to this point is that I feel quite spacey in the morning and I thought that was the taper from 50mg to 40mg to 30mg.. The endo said it was probably still the anesthetic from surgery, but that doesn't seem right.
I'll keep a close watch on my heart rate now that I'm down to 25mg/day. I have been eating saltier foods, and drinking plenty of water!
There is a study (I participated it in) that used hair to measure cortisol. I don't know when it will be published but under this study, the used many well people (our spouses) and people on replacements. In general, they found people over-replaced for what a normal body produces. There is some loss when you take pills (in that what you take you don't completely absorb).
Normal doses have always too depended on the person, the activity etc. so there is no perfect way to find what is good. Just to digress a bit - the range for illness is so wide when some are obviously ill that it is silly! But probably normal people produce around 10-17mg but there is no way to know what you produce until you hit that mark (the wall!) and start to hurt.
Both high and low cortisol have impaired immune systems. Joy! Usually low cortisol has a high heart rate as the blood pressure is low - low BP means the heart is working harder to pump hence the higher pulse sometimes... I add salt when that happens.
It has ONLY been a week. Your body has been under the gun of a tumor for a while - it is not going to recover that quickly. Surgical recovery is one thing, hormonal is another. Please have a bit more patience with yourself (hard, I know as I was ticked myself that I was not instantly better after the torture my tumor put me through!)
I don't think you can be secreting normally on 30mg a day... but I am not a doc - but I have not heard of that happening.
Normal doses have always too depended on the person, the activity etc. so there is no perfect way to find what is good. Just to digress a bit - the range for illness is so wide when some are obviously ill that it is silly! But probably normal people produce around 10-17mg but there is no way to know what you produce until you hit that mark (the wall!) and start to hurt.
Both high and low cortisol have impaired immune systems. Joy! Usually low cortisol has a high heart rate as the blood pressure is low - low BP means the heart is working harder to pump hence the higher pulse sometimes... I add salt when that happens.
It has ONLY been a week. Your body has been under the gun of a tumor for a while - it is not going to recover that quickly. Surgical recovery is one thing, hormonal is another. Please have a bit more patience with yourself (hard, I know as I was ticked myself that I was not instantly better after the torture my tumor put me through!)
I don't think you can be secreting normally on 30mg a day... but I am not a doc - but I have not heard of that happening.
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?