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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?
Best Answer
ha, ha, ha, you have such a good sense of humor, after being through so much, it says a lot about how strong you are.
I am nervous about the surgery, mostly because I will have only one adrenal gland remaining, and I'm not sure whether that will be functioning or return to functioning status. Therefore, I am worried about replacement steroids for life and battling blood pressure issues which I don't have now.
But the benefits might outweigh the risks. I am highly irritable and emotional right now, and I'm not sure if that is the excess cortisol or not. I have been sometimes low normal, and then sometimes mildly high on so many cortisol tests recently, its confusing.
If I were markedly high, I'd feel better about this surgery. I have, though, calmed myself somewhat by instead basing my decision on tumor size. 6cm seems to be the magic number for increased risk of cancer, and I'm only a cm away from that, so out it comes. Besides, I might regain a better progesterone level afterward if I don't have so much cortisol. And that might mean a better estrogen level. And that might mean my uterine fibroids will start to shrink. And that might mean I won't have to have a hysterectomy. hoorah.
I am nervous about the surgery, mostly because I will have only one adrenal gland remaining, and I'm not sure whether that will be functioning or return to functioning status. Therefore, I am worried about replacement steroids for life and battling blood pressure issues which I don't have now.
But the benefits might outweigh the risks. I am highly irritable and emotional right now, and I'm not sure if that is the excess cortisol or not. I have been sometimes low normal, and then sometimes mildly high on so many cortisol tests recently, its confusing.
If I were markedly high, I'd feel better about this surgery. I have, though, calmed myself somewhat by instead basing my decision on tumor size. 6cm seems to be the magic number for increased risk of cancer, and I'm only a cm away from that, so out it comes. Besides, I might regain a better progesterone level afterward if I don't have so much cortisol. And that might mean a better estrogen level. And that might mean my uterine fibroids will start to shrink. And that might mean I won't have to have a hysterectomy. hoorah.
You won't be on the steroids long enough for weight gain and bone damage - but you might get edema if you are still on IV...
Less cortisone to a point yes - but once overdone - it makes you crawl the walls and want you to throw people... think incredible hulk...
Your spouse should be prepared. My hubs was SO happy after my adrenals came out - he said I was like a new, nicer person and especially better in the car. It now longer felt like all the cars were coming at me.
To reduce, simply scream at the doctor!
Less cortisone to a point yes - but once overdone - it makes you crawl the walls and want you to throw people... think incredible hulk...
Your spouse should be prepared. My hubs was SO happy after my adrenals came out - he said I was like a new, nicer person and especially better in the car. It now longer felt like all the cars were coming at me.
To reduce, simply scream at the doctor!
Well I'm hoping I will be out the day after surgery, so maybe 50mg every 8 hrs will be short term and I won't be crawling the walls.
Besides hyper-alertness, and irritability, is there anything else I should be on watch for?
I would have thought, that with that much hydrocortisone in my system, that I would be feeling pretty good. You know, less inflammation, less pain.
The last time I was on dexamethasone for a suppression test, my spouse said he could see my personality change, like you said, a little nasty. And that was only .5mg of dex every 6 hrs. If I start to scream at the nurses on 50mg HC every 8hrs, maybe they will suggest to the doctor that my hydrocortisone be decreased sooner than later :--)))))
Besides hyper-alertness, and irritability, is there anything else I should be on watch for?
I would have thought, that with that much hydrocortisone in my system, that I would be feeling pretty good. You know, less inflammation, less pain.
The last time I was on dexamethasone for a suppression test, my spouse said he could see my personality change, like you said, a little nasty. And that was only .5mg of dex every 6 hrs. If I start to scream at the nurses on 50mg HC every 8hrs, maybe they will suggest to the doctor that my hydrocortisone be decreased sooner than later :--)))))
No, that is right... I had that one surgery as well - every 8 hours they gave me 50mg. I thought I was going to die!!! And my husband was going to kill me. The first dose or so was fine as you are healing, coming off anesthesia and all, but then it was just too much and I was getting steroid-induced cushing's and my mood was rather nasty ... since it was off the diurnal rhythm, I could not sleep etc. it was AWFUL!!! Be prepared...
The average replacement dose is between 20, 25-30mg... 40 is rather high! But you have to do what you have to do... but the bulk, yes, is taken in the morning to mimic the diurnal rhythm.
The average replacement dose is between 20, 25-30mg... 40 is rather high! But you have to do what you have to do... but the bulk, yes, is taken in the morning to mimic the diurnal rhythm.
Just confirmed with doctors office. Endo has ordered 100mg for surgery, and 50 mg in the eight hours following.
But the medical assistant may have been reading the chart wrong, she said 50mg every 8 hours following, WHAT???? I'll definitely be asking the surgeon to clarify that during the pre-op. Is it 50 mg/day following surgery until discharge or every 8 hours !!??
I did confirm this, the med assistant says the endo wants 20mg am/20mg early pm until the follow-up visit scheduled one week after surgery. At that visit we're supposed to talk about stress dosing/emergency dose.
I think 40mg/day is WAY too high. I may consider taking 20am with 10mg pm the first day, followed by 20mg am and 5mg pm the second day, and switch back and forth until the follow-up visit.
I don't think I would be putting myself in any harm by doing that. I know you can't suggest I do anything other than follow dr's RX, but if it's not right, could you please advise what I should ask/say to get it right? Or could you confirm that average hydrocortisone replacement is 20mg/day with the smallest amount being taken in the early/mid-afternoon?
But the medical assistant may have been reading the chart wrong, she said 50mg every 8 hours following, WHAT???? I'll definitely be asking the surgeon to clarify that during the pre-op. Is it 50 mg/day following surgery until discharge or every 8 hours !!??
I did confirm this, the med assistant says the endo wants 20mg am/20mg early pm until the follow-up visit scheduled one week after surgery. At that visit we're supposed to talk about stress dosing/emergency dose.
I think 40mg/day is WAY too high. I may consider taking 20am with 10mg pm the first day, followed by 20mg am and 5mg pm the second day, and switch back and forth until the follow-up visit.
I don't think I would be putting myself in any harm by doing that. I know you can't suggest I do anything other than follow dr's RX, but if it's not right, could you please advise what I should ask/say to get it right? Or could you confirm that average hydrocortisone replacement is 20mg/day with the smallest amount being taken in the early/mid-afternoon?
Hmmm... most people get the emergency stuff set up in advance - as it is sometimes hard to get the act-o-vials etc. Oh and the docs sometimes order the med and NOT the needle - you need both... and it is an IM needle. You will likely have to pay for the vial out of pocket as most insurance companies will not pay for it - but it is about $17 out of pocket. But you have to run around and find a pharmacy willing to deal in injectables - not all will fill it. They will likely have to order it as well.
20mg in the afternoon is wow... I take 2.5 - most people take 5mg. That is a lot. It also pretty much destroys your diurnal rhythm. Prepare to gain a lot of weight.
The salt issue is really the renin/aldosterone axis and the sodium/potassium ranges - and change in them lately?
People differ for crisis so you will have to learn what happens with you. I get low BP. high pulse, nausea, headache, confusion (so I won't think to take meds joy!) and fever to begin with when I go into crisis...
BP can spike or go down so look for a change. Nausea. Feeling horrible. Fever - it may be low grade - and if you get a fever from being sick like the flu, you have to stress dose! A couple of the links in the health pages (upper right) deal with stress dosing. sweating, confusion, vomiting...
I will post a link on the symptoms.
20mg in the afternoon is wow... I take 2.5 - most people take 5mg. That is a lot. It also pretty much destroys your diurnal rhythm. Prepare to gain a lot of weight.
The salt issue is really the renin/aldosterone axis and the sodium/potassium ranges - and change in them lately?
People differ for crisis so you will have to learn what happens with you. I get low BP. high pulse, nausea, headache, confusion (so I won't think to take meds joy!) and fever to begin with when I go into crisis...
BP can spike or go down so look for a change. Nausea. Feeling horrible. Fever - it may be low grade - and if you get a fever from being sick like the flu, you have to stress dose! A couple of the links in the health pages (upper right) deal with stress dosing. sweating, confusion, vomiting...
I will post a link on the symptoms.
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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?