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 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.
Have an Answer?
You are reading content posted in the Adrenal Insufficiency Community
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
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?