Aa
Cortisol low again?
I was diagnosed with SAI after a craniotomy to remove a brain tumor a few months ago...as Rumpled knows I've been on HC which had my cortisol back up to 13 last Tues. Yesterday my blood pressure was 78/44 so my GP NOT my endo sent me for a cortisol and it came back at 4. My endo said to check my bp again later in the week but not to worry about my bp yet....then my GP calls and told me the results and that she's faxing the endo the result and to call them. Since I'm new to all of this I feel like the endo won't take me seriously if I bug her..but I feel really strange today and it made more since after I got the results. I also wanted to ask if any of you have any thoughts as to why my cortisol would change so much on the same amount of HC?
Yeah an extra 5mg is not much at all... it is that whole science vs art thing though - so you just have to take what you need to keep you going but not push yourself into the Cush...
Make sure you keep up fluids and salt as well. Sorry to hear about the kidlets.
Make sure you keep up fluids and salt as well. Sorry to hear about the kidlets.
Hey there
Extra 5 mg is prob ok. It might mean that ur daily dose should be higher? What is ur dose right now? Over the long haul you want to avoid medication induced Cushings. If life is super stressful and you are using up the hc that u take then that is what matters. Xbox horsey
Extra 5 mg is prob ok. It might mean that ur daily dose should be higher? What is ur dose right now? Over the long haul you want to avoid medication induced Cushings. If life is super stressful and you are using up the hc that u take then that is what matters. Xbox horsey
lol...It seems to be getting a little better..I go up again on the dose Thursday. I swear my life is far too complicated these days...My 11 y/o son was diagnosed with Narcolepsy this week and the baby has a rare bacterial infection in his lungs that they found during a bronchoscopy. I've been taking an extra 5 mg of HC for a while now..is it okay to take extra for more than a week?
Funny as in? Are you a stand up comedian now? LOL... yeah those meds are hard to take so stay in touch with the doc if the side effects are too much - there are others to try that may work better for you with more tolerable side effects - none without.
I can get the salt locally cheaper, but online you can get it as well...
I can get the salt locally cheaper, but online you can get it as well...
The Lamictal has me feeling pretty funny these days. My bp seems to be pretty good lately too.
I've never heard of seasonello...sure sounds good though! I'll have to try to find it.
I've never heard of seasonello...sure sounds good though! I'll have to try to find it.
For me, having pituitary induced AI...taking salt does not do much for me. But then I am able to control my BP with the hydrocortisone pretty well.
Just sayin'
Also I was on Lamictal for a couple of years early on, because my shrink thought that I might be bipolar 2.. I'm not on it any more tho. Now my mental health issues seem to be under better control now that my hormones are better.
But I don't seem to remember having many issues with it at the time.
ALOOOOOHA
Horselip
Just sayin'
Also I was on Lamictal for a couple of years early on, because my shrink thought that I might be bipolar 2.. I'm not on it any more tho. Now my mental health issues seem to be under better control now that my hormones are better.
But I don't seem to remember having many issues with it at the time.
ALOOOOOHA
Horselip
Ewww! Sounds awful... I know I had to taper up on my dopa/topamax (it makes ya stupid!) as it has nasty effects too...
Do keep up on the fluids and watch your ankles and BP! I am watching mine so far ok! I just had some of my favorite salt - seasonello - (it has sea salt, rosemary, sage, garlic, and pepper - maybe other stuff but the bottle smells like a spa when you open it...) yum!
Do keep up on the fluids and watch your ankles and BP! I am watching mine so far ok! I just had some of my favorite salt - seasonello - (it has sea salt, rosemary, sage, garlic, and pepper - maybe other stuff but the bottle smells like a spa when you open it...) yum!
Thanks :) I might bring it up to my cardiologist too then and see if he says to stay up on the salt..which would be fine by me :P
It takes 8 weeks to titrate up to the full dose of the Lamictal b/c you can get a rash and die apparently...so far I've just felt a little strange..almost like the pain pills after the surgery strange. My mouth has been dry too.
It takes 8 weeks to titrate up to the full dose of the Lamictal b/c you can get a rash and die apparently...so far I've just felt a little strange..almost like the pain pills after the surgery strange. My mouth has been dry too.
I take fludrocortisone - and I take salt with it. It helps retain salt (aka sodium) to help keep the BP up. My doc actually just upped my dose AND upped my salt intake so... I am a little baffled that you are told to not take salt as well? I know that you can get swollen on it - it is best to taper up when you start it and make sure that if you get swollen ankles to increase fluids (sounds bizarre!) and cut back a bit on the salt...
I am not familiar with lamactal - I take topamax which I think is in the same class but for migraines, not seizures... I would ask a pharmacist about side effects and all... and how to separate your meds or what you can take together etc. I have a list - and I take it in and get checked for what goes together (including OTC stuff - like I cannot take thyroid and calcium together) so I can manage what to take when... what a pita.
I am not familiar with lamactal - I take topamax which I think is in the same class but for migraines, not seizures... I would ask a pharmacist about side effects and all... and how to separate your meds or what you can take together etc. I have a list - and I take it in and get checked for what goes together (including OTC stuff - like I cannot take thyroid and calcium together) so I can manage what to take when... what a pita.
Endo put me on Fludrocortisone for my BP's. I think I remember it being mentioned somewhere above. She told me to stop my high salt diet and try this. I also did my monitoring at the EMU at Vandy for 7 days and they've put me on Lamictal for simple partial seizures now. Any advise on these meds? I don't know anyone else who's been on them.
Some docs say to do some for emotional stress, some say NO. I did when my mom died, for instance - so I would say for something that is taking an emotional and physical toll, that you need to make sure you still feel well.
The whole point is that it can be over-used, and so too much can be detrimental, so it is hard to point out all the times to use. Rule of thumb - you feel sick, you need it. It is part art, part science then to get the dose to what you need and not over do!
The whole point is that it can be over-used, and so too much can be detrimental, so it is hard to point out all the times to use. Rule of thumb - you feel sick, you need it. It is part art, part science then to get the dose to what you need and not over do!
are you guys telling me that Hc dosing should be increased for emotional stressors and extra physical activity--not just for illness, injury or surgery? of course, my doc never told me anything about stress dosing while i was on HC, but i did hear from another doc that i only needed it for illness or injury. we were under so much stress---no wonder i felt like crap all the time!!
can you even guess how i feel now that they pulled me totally off of it?? i can't wait to get back on it, and hopefully get some better directions on how to use it properly.
can you even guess how i feel now that they pulled me totally off of it?? i can't wait to get back on it, and hopefully get some better directions on how to use it properly.
Wanted to stop by and let you know I'm alive..lots going on. Gavin's now being tested for a fatal disorder called Menkes..and I've just been so stressed that I can't even think straight. My cardio appt went well and the testing all came back good :) I have the Jobst stocking and they seem to be doing the trick along with extra salt. Hope you are all doing okay!
Can you order one of those plastic bubble things???? Like that boy played by John Travolta had to stay in? :P just until your kids grow up, I mean not forever.
Yes. You are tired and been exposed to sick people and I need it to travel anyway. Keep water and cortex handy. Let the doc know you need more to stress dose.
I got the compression stockings too. Get fitted as I got a cheaper brand and they were not comfortable then went to another place and got another brand - jobst- and they were so much better to wear. I hate that you are young and need them, though.
Does salt help you at all? Have you tried salt tablets?
Make sure you shower before the monitor as it is a long, nasty 24 hours with that holter and I hate them...
I got the compression stockings too. Get fitted as I got a cheaper brand and they were not comfortable then went to another place and got another brand - jobst- and they were so much better to wear. I hate that you are young and need them, though.
Does salt help you at all? Have you tried salt tablets?
Make sure you shower before the monitor as it is a long, nasty 24 hours with that holter and I hate them...
Well these silly emergencies aren't playing nice still :P My 1 y/o that got me sick a month ago with the URI went straight into an ear infection..then a virus last week with a 105.1 fever...well he got worse yesterday so we were off to the ER. Turns out he has another ear infection, exudative tonsillitis, croup, and the virus still..I'm leaving Wed for Vandy for the 5 day stay so I'm wondering if I should stress dose until I leave since I spent the day at Children's and today will be hanging out at the ped office and trying to keep my little man comfortable.
I am getting better at figuring it out on a daily basis to make it where I'm comfortable :) I had an echocardiogram done and holter monitor that I'll get the results of tomorrow. My cardiologist wants me to talk to the endo and neuro about that bp med. He also has me wearing compression stockings.
I am getting better at figuring it out on a daily basis to make it where I'm comfortable :) I had an echocardiogram done and holter monitor that I'll get the results of tomorrow. My cardiologist wants me to talk to the endo and neuro about that bp med. He also has me wearing compression stockings.
Wow - I hope your little one gets better soon. I think this year is jinxed or something - it seems like everyone is having a time and it has only just begun...
Yeah, I use by BP monitor to guage how much HC I need - or salt. So I can adjust up some HC or salt to keep me out of trouble. Also keep up fluids.
Yeah, Horsey is right, emergencies should be nice enough to happen at good times but that does not happen.
Call the office and get extra medication so you can take what you need, when you need it. I know for my insurance company if the doc puts 15mg daily, you cannot get any extra, so you have to get her to write the script for so many pills and have her write the instructions as take as needed so you can get the extra to stress dose - or write for an increased dose so you always have extra on hand! I always got 5mg pills for that reason but the only brand that does that now is not my fav...
Yeah, I use by BP monitor to guage how much HC I need - or salt. So I can adjust up some HC or salt to keep me out of trouble. Also keep up fluids.
Yeah, Horsey is right, emergencies should be nice enough to happen at good times but that does not happen.
Call the office and get extra medication so you can take what you need, when you need it. I know for my insurance company if the doc puts 15mg daily, you cannot get any extra, so you have to get her to write the script for so many pills and have her write the instructions as take as needed so you can get the extra to stress dose - or write for an increased dose so you always have extra on hand! I always got 5mg pills for that reason but the only brand that does that now is not my fav...
So yeah we are supposed to take our hydrocortisone mostly in the day...to mimic what a supposedly "normal" person makes. But then wham..an emergency at night. A normal person can make the extra hydrocortisone to deal with it, but we cannot. So you probably needed hydrocortisone for those long nights in the ER.
Again cause we are either "on" or "off" It does not depend on the time of the day either. Sometimes life does not fit into this little 8-5 world like our medication dosing. Kids and life does not always fit into neat little compartments. HA HA right
....altho it would make it easier for us if stressful things only happened in the morning when we've taken our larger dose of HC!!!!
LISTEN UP WORLD...YOU ARE TO REVOLVE AROUND MY MEDICATION DOSING, ok???
hope that your little one is doing better ; )
Horsey
Again cause we are either "on" or "off" It does not depend on the time of the day either. Sometimes life does not fit into this little 8-5 world like our medication dosing. Kids and life does not always fit into neat little compartments. HA HA right
....altho it would make it easier for us if stressful things only happened in the morning when we've taken our larger dose of HC!!!!
LISTEN UP WORLD...YOU ARE TO REVOLVE AROUND MY MEDICATION DOSING, ok???
hope that your little one is doing better ; )
Horsey
You two are awesome. I had read them both soon after they were posted but had a CRAZY few days. My daughter has a severe concussion so I spent two nights in a row at the ER because they saw some bleeding on the brain then she got worse again all of the sudden...Now we're having to do this state required program for any minors with traumatic brain injuries.
I knew I could count on some kind of explanation that made sense here. I found some groups on FB but didn't get much help. It was one of those happy dance moments when the lightbulb went off and I understood it because you know me..I was racking my brain trying to figure it out. My endo should be back next week so I will be armed with the right things to talk to her about. PT just pulled up..time to get to work..thanks again!
I knew I could count on some kind of explanation that made sense here. I found some groups on FB but didn't get much help. It was one of those happy dance moments when the lightbulb went off and I understood it because you know me..I was racking my brain trying to figure it out. My endo should be back next week so I will be armed with the right things to talk to her about. PT just pulled up..time to get to work..thanks again!
It sounds to me like you can use your blood pressure readings to help you to fine tune your dose of hydrocortisone. When your pressure is low, then you know that you probably need to take more hrdrocortisone. What you need from your endo, is guidance on what is the best daily dose and how to time it all. From what I recall you are also having issues with blood glucose.
The endo should be giving you guidance on all of this. Also should help you to know what to do if your pressure is low when you've taken your meds.
Tracklng your blood pressure, fatigue levels, timing of when you take your hydrocortisone etc can all helo you to help your doctor to tune all of this.
It's a lot of work at first. But once you get it right for you it will become a background issue that you won't really think about so much.
The meds are just not the same as when our bodies makes it's own cortisol..I find that I am either "on" or "off".. It takes some getting used to and knowing how to fine tune your dose for say extra activity. For example I usually rest in the afternoon. This is quiet time when I nap, read or watch a little TV.. If I know that I will have to be out in the world doing stuff, I have to take extra 2.5 - 5mg of hydrocortisone. Otherwise, I am zapped, dragging my feet and so tired that I just cannot do it. .I've worked this out over time with my endo's blessing..
Hope this helps-
It gets better
Horselip
The endo should be giving you guidance on all of this. Also should help you to know what to do if your pressure is low when you've taken your meds.
Tracklng your blood pressure, fatigue levels, timing of when you take your hydrocortisone etc can all helo you to help your doctor to tune all of this.
It's a lot of work at first. But once you get it right for you it will become a background issue that you won't really think about so much.
The meds are just not the same as when our bodies makes it's own cortisol..I find that I am either "on" or "off".. It takes some getting used to and knowing how to fine tune your dose for say extra activity. For example I usually rest in the afternoon. This is quiet time when I nap, read or watch a little TV.. If I know that I will have to be out in the world doing stuff, I have to take extra 2.5 - 5mg of hydrocortisone. Otherwise, I am zapped, dragging my feet and so tired that I just cannot do it. .I've worked this out over time with my endo's blessing..
Hope this helps-
It gets better
Horselip
Cortisol is *used* so if you are stressed, sick or whatever, it can vary quite a bit.
With such a low blood pressure, they may have to consider adding a mineralcorticosteroid - aka florinef (that brand is not longer available but that is what everyone calls it) so that you can hold on to sodium better and keep your blood pressure up and feel better. Make sure that if you get it that you taper on to it - you may only take a tiny bit but it is a powerful medication and can make you puffy (or give you what we call the florinef fluffies - you can gain water weight on it). Ironically, upping salt and fluids will help shed that.
The same dose of cortisol daily may or may not work always - you may need an extra bit when there is a busy day. This can be even a 2.5mg. For example, I take 5mg when I travel. If you feel bad and your BP is low, add more cortisol or salt. You may need to stress dose - you may have an infection and not know it (as in UTI or something).
With such a low blood pressure, they may have to consider adding a mineralcorticosteroid - aka florinef (that brand is not longer available but that is what everyone calls it) so that you can hold on to sodium better and keep your blood pressure up and feel better. Make sure that if you get it that you taper on to it - you may only take a tiny bit but it is a powerful medication and can make you puffy (or give you what we call the florinef fluffies - you can gain water weight on it). Ironically, upping salt and fluids will help shed that.
The same dose of cortisol daily may or may not work always - you may need an extra bit when there is a busy day. This can be even a 2.5mg. For example, I take 5mg when I travel. If you feel bad and your BP is low, add more cortisol or salt. You may need to stress dose - you may have an infection and not know it (as in UTI or something).
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