Aa
is this a crisis?
I had surgery on May 21 to repair 2 hernias and removal of gallbladder. Since I have been back to the doctor 5 times and to the er once. It started on May 24 I had a post surgical infection, started on antibotics and felt decent for a few days, then I started running a fever, horrible stomach/back pains, general weakness that I have been in bed for a week other than going for medical treatment, some of the worst headaches of my life and averaging losing a pound a day, I have no appetite, most likely dehydrated because of lack of fluids due to nausea. I told the ER I had addrenal insuff, but I dont think they got it, the family dr just keeps giving me shots of toradol which helps for a short period of time. Didnt occur to me until now that this could be a crisis. Any input?
Higher doses can be paradoxial - your body needs cortisol to heal but only the correct amount. You do need a bit more when you are sick, but too much will prevent you from healing. The docs do advise to stress dose when you are sick, but only the short term, not long term.
I had an open wound - just a small one - that took me just short of two years to close, with doctor's help. I did not have diabetes. That was when I had Cushing's.
I was just at a conference and the recent studies now show that normal bodies live on about 10mg of cortisol a day about 10mg of HC but there is some loss with the pills, so 15 is what they are giving now, instead of 20 to 30mg. I am with people with no adrenals and many go with 10mg of HC or less. The doc was polling us. But you want to take the bulk in the am - when the body wants it. I now take my dose then and now do pretty ok unless I am really active.
I had an open wound - just a small one - that took me just short of two years to close, with doctor's help. I did not have diabetes. That was when I had Cushing's.
I was just at a conference and the recent studies now show that normal bodies live on about 10mg of cortisol a day about 10mg of HC but there is some loss with the pills, so 15 is what they are giving now, instead of 20 to 30mg. I am with people with no adrenals and many go with 10mg of HC or less. The doc was polling us. But you want to take the bulk in the am - when the body wants it. I now take my dose then and now do pretty ok unless I am really active.
Hi Kid!!
I'm happy you're dose is increased, and that you're not taking night doses....it's weird how HC can keep one from sleeping!
I've been lucky w/my sleep. Since I've been pretty stable, I've gone from getting 2hrs sleep within 36hrs to 6+hrs every 24hrs. It appears the stable cortisol level has allowed my other systems to heal [nerves, anxiety, insomnia etc] and I'm functioning as a normal person. I forgot what it was to be normal!
I hope nothing's seriously wrong w/your heart. Please keep us posted.
As always, I'm here to support you as well as I'm able.....and, believe it or not..just talking to you has helped me!!
Thank you :)
I'm happy you're dose is increased, and that you're not taking night doses....it's weird how HC can keep one from sleeping!
I've been lucky w/my sleep. Since I've been pretty stable, I've gone from getting 2hrs sleep within 36hrs to 6+hrs every 24hrs. It appears the stable cortisol level has allowed my other systems to heal [nerves, anxiety, insomnia etc] and I'm functioning as a normal person. I forgot what it was to be normal!
I hope nothing's seriously wrong w/your heart. Please keep us posted.
As always, I'm here to support you as well as I'm able.....and, believe it or not..just talking to you has helped me!!
Thank you :)
oh, while in the hospital, they had to start me on heart meds because in the middle of the night my chest hurt sooo bad they did an EKG and started me on it, they also said the base of my lungs were starting to collapse, and yes they confirmed a new hernia, adeoma in the left adrenal and a pocket of fluid in the abdomen, they were not sure if it was normal post surgical changes or a leak or start of an abscess, I see the surgeon again this friday.
Thanks Rumpled and Corri! The fellow just called back and changed the dosage again, she said to take 20mg upon waking and 10mg around 2pm and drop the night does, wish I had known this last night, I was wide awake even after taking lunesta! I see the endo tomorrow (my regular one is out of the country) so hopefully he will listen!
I did recently have surgery to have my gallbladder removed and 2 hernia's repaired, then ended up with 2 post surgical infections, which was when I started feeling really really bad and went to the er. The hospital was giving me iv steroids at 6am 2pm and 10 pm for a total of 8 dose. guess I know now why I wasnt sleeping much there either. Probably, is I dont know what a normal dose is as the doctors have been taking a wait and see approach and never prescribed anything until now. I have an appt today with my pcp to just check labs, since when I was discharged my white count was still elevated and poitassium went from high to low and they gave me supplements. Not sure what else the family doctor can do, he was already at a loss the day I went into the hospital. And lucky me, I know have not one but 2 new hernia's from this surgery! The surgeon did say the tumor on the left adrenal appears to bengin but it may be functional and overproducing dhea and blocking the cortisol so it will need removed. There is also a pocket of fluid in the abdomen where the gallbladder was, they said it should reabsorb into the body but they will need to monitor it to be sure it isnt a bile leak or abscessing. I found out I am allergic to the contrast they use for ct scans, my throat started closing up, so they have to find a different way to image me, besides I dont want all that radiation, will suggest a ultrasound.
Thanks again to all for your input and will let you know whats going on!
I did recently have surgery to have my gallbladder removed and 2 hernia's repaired, then ended up with 2 post surgical infections, which was when I started feeling really really bad and went to the er. The hospital was giving me iv steroids at 6am 2pm and 10 pm for a total of 8 dose. guess I know now why I wasnt sleeping much there either. Probably, is I dont know what a normal dose is as the doctors have been taking a wait and see approach and never prescribed anything until now. I have an appt today with my pcp to just check labs, since when I was discharged my white count was still elevated and poitassium went from high to low and they gave me supplements. Not sure what else the family doctor can do, he was already at a loss the day I went into the hospital. And lucky me, I know have not one but 2 new hernia's from this surgery! The surgeon did say the tumor on the left adrenal appears to bengin but it may be functional and overproducing dhea and blocking the cortisol so it will need removed. There is also a pocket of fluid in the abdomen where the gallbladder was, they said it should reabsorb into the body but they will need to monitor it to be sure it isnt a bile leak or abscessing. I found out I am allergic to the contrast they use for ct scans, my throat started closing up, so they have to find a different way to image me, besides I dont want all that radiation, will suggest a ultrasound.
Thanks again to all for your input and will let you know whats going on!
First, I'm sharing what works for me....I'm not saying it's the ONLY way to take HC. I DO NOT TAKE HC AT BEDTIME!!!!! My dosing stops no later than 3pm. I also do not stress dose often...just when I'm completely depleted...in my case I was totally disabled for 15yrs, and my body has to normalize itself. In the case of kidzxpress, she needed to 'up' her HC, yes, as you said, because they dropped her too quickly. Yes, she should NOT take her HC near bedtime...I suggest to take them upon arising, noon, and no later than 3pm.
I'm aware that the bolus is after surgery, not illness...but it is wise, say, if one is running a temp of 101+...to stress dose. Also, if one has overexerted to stress dose. When a person has AI, taking extra cortisone will not hurt them as long as it's not over a long period of time. We are not 'normal'. Our bodies cannot produce cortisol during times of extended stress, therefore, stress dosing will not harm us.
corri
I'm aware that the bolus is after surgery, not illness...but it is wise, say, if one is running a temp of 101+...to stress dose. Also, if one has overexerted to stress dose. When a person has AI, taking extra cortisone will not hurt them as long as it's not over a long period of time. We are not 'normal'. Our bodies cannot produce cortisol during times of extended stress, therefore, stress dosing will not harm us.
corri
Hi again!
Gosh! You really ARE in a pickle!! Are you seeing the doc tomorrow....or NEXT Tuesday?? If it's next Tues I sure don't envy you! When you get your new dose, I can help you with curving...[that means not taking the meds all at one...you spread it over hours, which allows your body to maintain a nice level of cortisol .. without peaks and valleys] Doctors don't take the time to tell you about such things; I've discovered them through my own research. Whatever you decide, I'm happy to be your friend and help you the best I can.
By the way, I'm in a pickle too!! I CAN'T FIND MY HC!! {hydrocortisone}....I only have enough for my morning dose! I don't know what I'm going to do. [wiping a tear from my eye]
Corri
Gosh! You really ARE in a pickle!! Are you seeing the doc tomorrow....or NEXT Tuesday?? If it's next Tues I sure don't envy you! When you get your new dose, I can help you with curving...[that means not taking the meds all at one...you spread it over hours, which allows your body to maintain a nice level of cortisol .. without peaks and valleys] Doctors don't take the time to tell you about such things; I've discovered them through my own research. Whatever you decide, I'm happy to be your friend and help you the best I can.
By the way, I'm in a pickle too!! I CAN'T FIND MY HC!! {hydrocortisone}....I only have enough for my morning dose! I don't know what I'm going to do. [wiping a tear from my eye]
Corri
Sorry, you should not be taking roids at bedtime - how do you expect to sleep!!! That is what I meant. I am tired. Your overall dose is high IMHO.
The body can drop suddenly like that in illness - so yes, you can do that. I have when I was sick.
I also just get my stress dose. Taper back down and get back on my normal regimen as fast as I can. Kidz did not appear to get a taper... To go from 100mg to 5mg is pretty steep.
BTW, the bolus of 50mg is for after major surgeries, not after illness - you would be climbing the walls if you got that. Even so, getting that, you may stop healing. I have only gotten 100mg every 8 hours when they thought I was dying. I hated it. I got a lot after surgeries too.
The longer you are on higher doses - the more side effects of the steroids you would get.
I still don't like how you get your 'roids. Most take the bulk in the morning like a normal rhythm. That whole spread out is weird and contrary to how you should feel.
I also just get my stress dose. Taper back down and get back on my normal regimen as fast as I can. Kidz did not appear to get a taper... To go from 100mg to 5mg is pretty steep.
BTW, the bolus of 50mg is for after major surgeries, not after illness - you would be climbing the walls if you got that. Even so, getting that, you may stop healing. I have only gotten 100mg every 8 hours when they thought I was dying. I hated it. I got a lot after surgeries too.
The longer you are on higher doses - the more side effects of the steroids you would get.
I still don't like how you get your 'roids. Most take the bulk in the morning like a normal rhythm. That whole spread out is weird and contrary to how you should feel.
I was receiving 100ml every 8 hours while I was hospitalized then sent home on 5mg every 8 hours. I am completely exhausted! I just spoke to my endo's fellow and she increased the dosage to 20mg upon waking and 10mg at 3pm and bedtime, Hopefully this will help, she said the dosage the hospital sent me home on was entirely too low. I have been given NO instructions on anything, not for a stress dose, NOTHING! I am scheduled to see the dr tuesday, just need to get through the next few days UGH! Thank you for all the responses, keep them coming please, it does seem to at least help knowing I am not in this alone
First, how have you adjusted?? I hope you didn't drop too quickly. I'd suggest dropping by 5mg for 3 days, then 5 more until you feel well....did the doc give you instructions about how to adjust??? The body releases cortisol on a curve...it doesn't jump from low -- to high- to low....when we are depleted, it happens over a matter of time. We didn't 'just' become adrenal insufficient. What dose are you taking now????
That is indeed, strange. Plus your dosing regimen is contrary to a normal body. Find another doctor.
I suspected AI for some time now, saw a local endo that said it was mild AI and not an adrenal problem to see my ob/gyn, went back to ob/gyn said not her, sent me to GI dr went through a ton of tests said not him go back to ob/gyn went back and they sent me to cardiology who then sent me to another endo. The new endo I ended up going to said there was a problem with the adrenal but was monitoring me every 3 months, no meds. I have had a TON of labs, my dhea (normal up to 554) was over 2500. I had do a ton of research on my medical symptoms and everything kept leading back to AI, my potassium has flucuated for some time, I received steroid injections in my back on a very regular basis and I would seem to get better for a short time of each. With this recent admission, the ct scan showed a tumor on the left adrenal, but the hospital dr said he wants to wait to remove it to give my body time to recover from my recent surrgery and infection and now this crisis, he didnt want to stress my body any further.
QUESTION
I was released from the hospital on day 4, sent home taking 5mg hydrocort three times a day, by what I have read, after a bolus dose you should get iv therapy every 8 hours for 48 hrs then go home on 50mg every 8 hours for six days then adjust. I feel like today I have taken a step backwards, is this why, they didnt put me on enough? I see the endo on tuesday.
thank you all for your advice and support!
QUESTION
I was released from the hospital on day 4, sent home taking 5mg hydrocort three times a day, by what I have read, after a bolus dose you should get iv therapy every 8 hours for 48 hrs then go home on 50mg every 8 hours for six days then adjust. I feel like today I have taken a step backwards, is this why, they didnt put me on enough? I see the endo on tuesday.
thank you all for your advice and support!
When were you diagnosed w/AI?? Who is treating you for it? What made the doc test you for AI? I know I'm asking a bunch of questions, but it will help me to analyze your problem.
I agree w/rumpled...you need to see a doc that specializes in AI...an endocrinologist
I agree w/rumpled...you need to see a doc that specializes in AI...an endocrinologist
I carry an emergency shot - solu cortef (make sure it is an act-o-vial), the needle, alcohol pads, instructions on how to give the shot (minds go blank when cortisol goes down and/or you may not be the one giving the shot), emergency contact numbers, extra cortef, a medication like zofran or phenergan, salt tabs (in small, labeled containers - you don't want this to be huge!) and that should be it...
I also advocate a medic alert bracelet or the like - you need to have something to speak for you if you are unable to speak.
I also advocate a medic alert bracelet or the like - you need to have something to speak for you if you are unable to speak.
Thank you, I cannot believe the difference since I have been on iv steroids, the dr was in at 1 am in yesterday doing a EKG and started me on heart medicine, the ct scan indicated the base of my lungs were starting to collapse, my liver function was elevated, hopefully I will get to go home today on oral and will still need to follow up with the surgeon in a few weeks, a tumor on my left adrenal has developed since March, and from my surgery 3 weeks ago I have another hernia and they need to make sure the pocket of fluid reabsorbs back into my body and doesn't abscess. I really have to remember to increase my salt when I start feeling bad. What would go into an emergency kit? I knew I felt bad, just didn't realize how bad until I started feeling better, thanks again for you guidance!
Great - that is what you needed. Next time you start to feel lousy, take salt - it will lower the potassium but still get to the doctor!
Get an emergency kit put together as well.
Get an emergency kit put together as well.
thanks, yep, my potassium was high, I am currently admitted to the hospital getting steroids by iv, should get to go home tomorrow on oral steroids. I feel sooo much better, I didnt realize I was as sick as I was til I started feeling better. Thanks!
You need to see a doctor. If they have run electrolytes - a crisis would show up as low sodium and usually elevated potassium.
Push fluids and salty stuff (bouillion broth) and see if that helps - but see a doctor.
Push fluids and salty stuff (bouillion broth) and see if that helps - but see a doctor.
oh, and low grade fever that I am either freezing for hours or sweating like crazy then back to freezing
thanks all
thanks all
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