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?
Your doctor should run a stim test to see if your other adrenal is functional - but you would have to be on a lower total dose. It could be done after you are healed and you feel ok, but you have to taper down a bit and test the other adrenal to see what it does.
I think you need to take to the doc about the script and find out if the dose is already padded for stress dosing. Most people would not be able to sleep after 20mg in the afternoon so I am hoping that is not what he really means.
I left my bilateral adrenalectomy hospital room after 4 days on a dose of 25mg... But I probably had some hormones left in my body from the Cushing's so the doc did a steep taper of 100, 50, 50, 25. but I felt fine.
I would get a medic alert bracelet. Keep alert for signs of crisis. Keep salty stuff around the house too - pickles, sea salt, chips, olives, etc. Is the doc going to give you an emergency injection to have around too - solu-corfef act-o-vial?
I haven't talked to the endo for a little while, but at that visit she started to talk about an emergency back-up, then said lets wait and see how the surgery goes first and we'll talk more about that later--that it might not be necessary.
I will ask about the stim test once I have recovered sufficiently and I have started to taper. 40 mg seemed high to me. I will ask if the 40mg (20mg morning, 20mg early afternoon) is a stress dose following surgery and how long I should expect to stay on that level. Maybe it's only while in hospital.
I think with one adrenal gland left, that may or may not return to functioning status, having an emergency fall back is a good idea.
It's very curious, I used to crave salt, I put it on everything. My mom made homemade pickles and I loved them so much I used to drink the pickle juice too. But in the last year or so, I think everything is too salty. If I happen to add salt to something I balloon up with fluid retention, bad swollen ankles. Is that the excess cortisol? Everything else measures in normal range.
What are the most significant signs of adrenal crisis?
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...
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?
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.
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 :--)))))
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.
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 had one doc give me 250mg and the 100mg every 6 hours - I was clinging to the celing... like a bat. I finally refused and insisted they taper me before I bit the head off of the next person that came into the room...
Cortisol does jump around a lot - so it can be confusing... I hope this helps your hyst issue as well!!!
I know lots of people that have had both out and a few with one - they all are fine!
Surgery Wednesday morning, and back home Thursday afternoon.
Surgery was text book, laparoscopically, maybe 2 hours, it was fast. I didn't have any pain until about 8 hours later. I started getting chilled, anxious, started to get a headache, started throwing up, then it just got worse.
I asked whether or not I had been given any hydrocortisone after surgery and the nurse said all I needed was pain medication. That I shouldn't have gone so long without pain medication, that was the reason for all my discomfort.
I had to tell her that I needed replacement steroid, not steroid for pain and inflammation. She grudgingly read my chart to confirm, and then it was up to ME to watch the clock to make sure I got my next dose on time.
I got 100mg during the operation then three IV injections of 50mgs before leaving the hospital Thursday afternoon. They weren't sure what to do after that.
The surgeon suggested I continue 50mg twice a day for the next three days, but the endo had previously prescribed 20mg twice a day after discharge until follow-up.
The surgeon thought that might be too steep a taper, but 50mg twice a day seemed high to me. Geez, what's a person supposed to do.
So, I'm at home, trying to take a dose somewhere in the middle and trying to monitor my mental and physical symptoms as best I can. I think I feel pretty good, except I feel like a balloon, weather balloon that is, or maybe hot air balloon this morning. But when I get even the slightest bit of nausea my anxiety goes way up. I begin to wonder what if I can't keep the HC down?
I have a RX of phenegran to pick up, so maybe having that on hand will give me some comfort. But I'm not impressed by the guessing game on HC dosing. I am keeping hydrated and eating some salty foods, but I don't know if that matters or not. My sodium/potassium and blood pressure have always been stellar.
Do you take your morning HC all at once or do you split it over the course of an hour or so? Just wondering if that better mimics the bodies natural release of cortisol, maybe 20 mg taken as 5, 10, 5 within an hour? Or does it even matter?
Also, if I take the PM dose at approximately 2-3pm, wouldn't I need to take more before my normal waking hour of 5-6am if HC is fast acting but short lived?
I've just re-read the information in the links you provided to me, which also appear in the health pages. I think I have most of my questions answered from this. Sorry for being such a pest. I guess I just find it more reassuring to hear it directly from someone who lives it.
Don't worry! I had people I *bothered* I when I was going through it myself. When I woke up from the surgery I was almost surprised!
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?
Can they determine secreting vs non-secreting from pathology? Is that done automatically or is that something that would have had to have been requested in advance?
My understanding is that the endo determined secreting from the numerous lab tests before I had surgery so I wasn't aware that checking afterward was an option/available to investigate.
I would love for it to be confirmed that it was a secreting tumor since the labs were all over the board, and the low normal results were the most confusing, although I understand it could be a cycling pattern.
But alas, it is after the fact, so it would be a mute point. Still, I'll ask if that info is in the pathology report.
Today I am trying to reduce a little bit of HC. Down from 50mg/day yesterday to 40mg today. I think I will be ok. I sure would like to reduce some of this puffiness. I don't have sausage fingers anymore, but my cheeks, chin and neck are swollen. My tummy is too, but I think that is swelling from surgery.
I have been able to sleep at night, although I wake early, 2-3am and find it difficult to go back to sleep. I will keep hydrated and keep some salty foods on hand. So far so good for the nausea, and no dizziness from BP fluctuations. Your knowledge on what to watch for has been a blessing. Thank you.
Yes - that is how they could tell my was reactive to my pituitary and no secreting itself. They should do it automatically but it takes some time like a week to 10 days to do all the staining and slides etc. Benign fits in with secreting I think.
I would ask for a copy of the final pathology when it is done - they do a quickie in the op room just so they know if they need to do more extensive surgery.
Take is EASY on the taper. I would also make sure that you are fully and completely recovered as you body does need extra for the stress of recovery - then you can do a slow and easy taper.
Going down from 50 to 40 is not bad - but once you hit 20 - that is the point usually where the adrenal has to wake and where the taper gets harder just so you know! When the dosing gets lower, sleeping should be easier too.
I also found that walking a bit eased my pain - weird!
Well, I think my body is a little deceived by the extra cortisol (hydrocortisone) in my system because I seem to have very little pain.
Right now I feel the most discomfort in my wrist where they had the IV line, oh, and when I cough or sneeze, then I feel the abdominal incision.
I did ok on a taper of 50mg Friday to 40mg on Saturday. I started doing a small renovation project painting a door casing so I knew I was too wired.
On Sunday I tried 30mg. That also seemed ok, but I still felt wired and was out doing a little yard work.
It seems hard to hold myself back even though I know I need to heal.
I'm going to try 30mg again today ( 20mg AM and 10mg PM) and see how that goes.
I don't have ANY trouble going to sleep, in fact I feel quite exhausted by 8pm. If I wake up during the night I have trouble falling back to sleep, my mind just won't stop. However, that has always been the case. Taking HC doesn't seem to have changed that at all.
I believe that the stress dosing information you linked to me suggests an extra 5mg for minor mental or physical stress, and an extra 10mg for more serious mental or physical stress until resolved.
The Rx of 50mg seemed way too high and I didn't want to be on that for long. I think 30-40mg during recovery seems more appropriate. Maybe 35mg would be a compromise.
Doctors must hate people who self diagnose, self treat, self medicate etc. But on the other hand they can only offer recommendations and monitor for response. From reading some of the posts in this forum and on other medhelp forums, doctors get it wrong sometimes.
I think my endo is a good one, but I also had to ask for many of the previous tests I got. Since even just the timing of serum cortisol tests seems to be lost on most of them, a healthy skepticism or questioning mind isn't that bad to have.
That all being said, I agree, think I have pushed the taper a little. One day at 30mg is not enough to guide me, but if I continue to feel ok at 30mg I'll stay at 30mg for awhile before I try another taper. I'm just anxious to know if my remaining adrenal gland will begin to function.
But I have to keep telling myself its not a race.
Thanks for the info on what is included on the path report. I will ask for a copy to see if they checked whether the cells were secretory or not.
Let me put it this way - some people take extra doses for physical and mental stress - um, quite often... I was told by my doc to avoid this as to do this too often, I would just give myself the Cushing's back in pills that I just removed in the glands.
Taking the pills is kinda art, kinda science - too much is bad, too little is really bad.
But doing all those projects after abdominal surgery! You do realize that you have stitches on the inside! I would take it a bit easy... Move up the time of you PM pills to 3pm...
I will not tell you what to take as you have to work that out with your doctor and you need to heal. But try to take some of that physical activity down a notch - you still are healing... they moved all your organs to get to the adrenal...
I agree, dosing the steroid does seem to be a bit of art and science.
Today I am going to take 35mg (25mg AM, 10mg PM). Thank you for your suggestion to take the PM dose around 3 o'clock.
I know you can't recommend the amount I take, but your links to the information on stress dosing/health pages has been very helpful. And your personal experience, to me, is priceless.
I would like to try alternating 30/35mg for a few days. I see the endo tomorrow, Wednesday, and hope to confirm that and get guidance on where to go from here on.
Thank you for your concern over my activity level. I knew at the time it was probably too much, but I didn't and don't have hardly any pain.
I thought I would feel poorly afterward, but I didn't. I have far much less pain with this surgery than I did with the appendectomy. The difference could be the HC. You made a comment earlier that you felt you could throw people around like the Hulk. hee hee. I guess that is how I am feeling, in a different way.
There are two more questions I have. I will ask one of the endo, and one of the surgeon, but I would be very appreciative if you have any comment/experience on these questions:
1) have you, or do you know of anyone who has experienced a visual change while on HC?
I wear glasses, progressive lenses and really never have been satisfied with them, I'm always bobbing my head to get things clear. But now it seems like I am always trying to get that sweet spot, maybe especially after taking the AM HC dose, maybe I fell asleep and bent my glasses slightly, or maybe it's just my imagination. But I've also noticed that the whites of my eyes are whiter, and my eyeballs are smoother. I know that sounds funny but I used to have little bumps and what looked like scarring and I was told was just reaction to dust and dryness. That seems to be gone.
Just wondered if you had any comment on vision change with steroid.
2) My external incisions are almost healed over, and like I said I have no pain, but I do have quite a firm lump above and to the right of my belly button. I'm thinking it is disrupted and healing tissue from the adrenalectomy but it is more on the right side and they took the left adrenal. So just curious if you remember having any similar areas after your surgery. I don't like lumps and bumps but I do know there will be a certain amount of scarring and adhesions and temporary inflammation. (its not red or warm or painful)
I will try to tone it down a bit with the activity. I think its just my nature and that is hard to change. Hopefully I will become more mellow after all of this is done and with only one adrenal remaining, maybe I will be better at half speed.
1 - I know I could see better after pituitary surgery (and my ear ringing went away for a time) and I think that the same happened for a time after my adrenals - but I felt it was more, in my case, to a drop in cortisol since mine was so high to begin with...
2 - you may be having some hypertrophic scarring. My scars ALL do this (bleah) so I have all lumps from ALL my surgeries (except the muscle biopsy where the plastic surgeon closed so nicely that one is flat - but still purple).
Just give yourself some recovery time - then you can be back to full speed, speedy.
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?
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!
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?
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!
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.
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?
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.
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 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!
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 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.
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!
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
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.
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?
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.
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.
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...
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.
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?
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 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!)...
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