Cortisol Deficiency...a problem after surgery?

[Sunfish]

Hello all -

First off, I HAVE read all of the former posts regarding cortisol highs & lows & what not so I'm not trying to reinvent the wheel. My question is if anyone other than futurehope has had the more sensitive Insulin Response Testing (shows breakdown in body's ability to respond normally to stress with production of additional cortisol)?

Futurehope, I know that you had the testing & were unable to tolerate the cortisol pills. I think we probably saw the same doctor...at Union Memorial via Dr. K? I too have had struggles with the office staff but like him a lot. My initial adrenal tests were also normal but the more sensitive insulin test was not; my cortisol decreased when it was supposed to increase. FYI, though, he actually does it at his own office now; a NP actually did the test & was great - both interested in me & in answering all of my questions, a rare combo! I'm wondering if you felt any different prior to having to stop the meds it for the heartburn? I too am on 15mg in the AM & 5 in the PM, although I was told to take the 5 at 4pm...hmmm...

I was just started on the cortisol replacement (hydrocortinsone) & despite my reluctance to add an additional med am intrigued by the possibility of this being another piece of the puzzle. I've only taken it for a day & nothing good or bad. I wasn't anticipating such, but with me you never know:-)

I know that some have addison's but am wondering if anyone else has this cortisol-deficiency/unresponsiveness issue? It's odd b/c while tons of deficiency symptoms are eerily similar to autonomic problems, it seems more common for cortisol levels to be high at times of illness, stress, etc. I called my mom to tell her I was officially not stressed enough since my cortisol was too low. Ha.

Since the problem for me seems to be that my body doesn't adjust its production of cortisol normally in response to physical stress, I'm wondering if it could have something to do with how poorly my body reacted after my GB surgery in March? We have blamed it on some combo of my wacky body & a rxn to the pain meds, but perhaps there's something to the cortisol thing...

I'd love anyone's thoughts...

:-)melissa

[mom4cem]

Hi,

This may not be at all helpful but here goes. A few weeks back I had some nasty sinus problems and my allergist prescribed prednisone. I felt the best for 5 days than I had in a long time. They do not like you to be on long, it has some side effects that could be nasty. I could only figure it was the prenisone which is a synthetic cortisol. I may be way off on this but I think someone explained to me once that cortisol depresses the immune system so I was thinking that this may be a type of inflammatory thing going on. I was also told that at this point my adrenals were exhausted and not reacting properly.

I certiainly felt like that last night. I should be sleeping and all I had was waves of adrenaline wash over me as soon as sleep was about to it. I mean all night. I am sooooo tired and washed out now and even as I am awake the adrenaline is still spurting out inappropriately of course. I was hoping to find some natural support that would help nourish the adrenals and see if it would help. Still looking

[Poohbear]

I was recently told I have adrenal fatigue and my Dr recommended the book "Adrenal Fatigue--The 21st Century Stress Syndrome" written by Dr. James L. Wilson

The book has helped me understand several things going wrong with my body (allergies, thyroid problems, fatigue etc).

Anyhow you can check the book out and he also has a website if you want to look at that you may get some answers/insight from there as well.

The website is www.adrenalfatigue.org

[Ernie]

Hi,

I have the opposite: high cortisol. I am presently under investigation for that problem.

Ernie

[Sunfish]

Thanks for the replies...

mom4cem -

That's awesome that you felt so much better on the prednisone. For the sinus trouble you would have been on a MUCH higher dose, which is why it's not the safest to be on it for long. The cortisol (hydrocortisone actually...the body converts it into cortisol) that I've been put on is different in that I'm on a really small dose that is only meant to replace what should naturally be in one's body to begin with; thus the "normal" steroid side-effects should not come to pass. Still, you may have a valid observation in terms of your body & the possibility of an inflammatory mechanism; it makes sense to me.

Poohbear-

(I love your name!)

Thanks for the book/website resource...I'm definitely going to look at it.

Ernie -

I've actually heard of more people in your boat than the opposite!

Thanks again to all,

:-)melissa

[futurehope]

Melissa,

I'm back. I was told by Dr. Shomali that since I did react below normal under the ITT test, that in all likelihood, I would react poorly to such things as "illness/ surgery", etc. I told him that I usually feel "wiped out" for longer than normal after, say, the flu, and he said "yeah, you might need additional Hydrocortisone after a stressor."

Anyhow, I'm supposed to undergo elective surgery this Friday for a REALLY ugly vein in my right leg (to remove it) at Union Mem and I'm so scared of my reaction to the entire process, that I've called my surgeon and Dr. K and Dr. S (all at the same hospital) and said, "Please feel free to consult each other if you should have any questions in regards to my health."

[morgan617]

I'm having the basic cortisol test for Addison's tomorrow. The weird thing is, I have been on steroids several times in tapers because of my meneires (inner ear, 8th cranial nerve inflammation) and while on it, I feel so much better overall. Except it destroys my stomach, ick. But as soon as I taper off I seem to have this rebound thing where I feel AWFUL for about 1-2 weeks. Then I wish I was on it again, even at a tiny dose, to preserve my gut.

It's so hard to tell, because so many things overlap, but I have almost totally stopped having rushes. I just feel like death warmed over all the time (there ya go Corina) I have never had weakness and fatigue anything like this in my life and the only reason I don't vomit all the time is because I live on antiemetics.

So, even though I'm sure it will be absolutely negative, as is everything else in this miserable body, something is screwy somewhere. I am sure my adrenals have used up their lifetime supply of stuff, like my little raisin size ovaries. argh, morgan

[Sunfish]

Future -

Good luck with your surgery on Friday. Do you have someone going with you? Is it outpatient or inpatient? It's great that the docs involved are at least at the same hospital; I had my surgery elsewhere in March which meant when things went wacky afterward communication with Dr. K was next to impossible. It's great that you made the calls to give the "heads up" to all involved too.

I do find it interesting in terms of the illness/surgery recovery issue as I've always had a tough time but always attributed it to the autonomic issues. Hmm...

Ernie & Morgan -

make sure & keep me/us updated on how your testing goes.

Thanks again for all of the input!

:-)melissa

[morgan617]

I had my test today. I was a little worried about getting a hormone that was going to set off my adrenals, but really had no reaction to it. But talk about a honkin needle. The nice thing was, I only got stuck once, they did everything through it. I guess I expected that if they gave you something to trigger your adrenals, you'd have the rush you get with episodes, but as I said, nothing. I thought that was a little weird, so am interested to see what the results are. She said I was going feel like I just had a huge dose of prednisone. hmmm will post in a couple days to let you know. morgan

[DancingLight]

Morgan,

I'm laughing about the needle! I just told my Dad that they think Botox injections DIRECTLY into the prostate gland can help with enlarged prostate...he about fainted over the phone. I am sooooo mean b/c he can't even handle a blood test! Thank goodness he doesn't have POTS! But he WILL faint if you come at him with needles!

But, I'm thinking...do you think we could get Botox for our bladders????? That would be nice. I'd probably do it!

Anyway, I really did get off-topic here, sorry...anyway, thanks for checking in with us...I am glad that you didn't have any major problems with the test...that is always a relief!!!!

I have stayed up waaaaaaaaaayyyyyyyyy past my bed time...and I didn' thave any cortisol injected...I'm just wired.

So goodnight...and I will talk to you more soon...

Emily

[Sunfish]

Morgan -

I am glad that at least your test didn't make you feel icky...now the results waiting game yet again, eh?

Em -

I'm laughing about you telling your dad about the injections...I can't quite envision relaying that info to mine! LOL...

Re: the botox though, it has been done. I personally have the opposite problem (not being able to go...have to cath myself) so haven't looked into it at all, but here's one link:

http://www.healthcentral.com/newsdetail/408/8007157.html

I only did a quick search so I'm sure there's better info out there to be had.

Although yeah, it's a bit off from the subject heading...oh well:-)

WAY past my bed time (on which I have an interesting article to post...)

:-)melissa

[corina]

Morgan,

I'm very interested in hearing the results of your test. I've been thinking I'm having a lack of adrenaline.

I've been tested for thyroid problems a zillion times. Nowadays when a doctor mentions having my thyroid checked, I tell him I'm absolutely sure there's NOTHING wrong with that (I'm very proud to have SOMETHING that's working properly, as you all understand ).

Corina

[corina]

Em,

you sooo made me laugh. That poor father of yours!!!

Corina

[Gena]

Morgan,

I had the adrenaline test for Addison's a month or two ago. I had no reaction to the injection at all either. My test results were somewhat borderline according to the scale for normal ranges they printed on the test results. But my endo doc didn't seem worried about it. I would say I definitely have adrenal fatique, but he said I do not have Addison's, which was good news, b/c having to go on corticosteroids the rest of your life is incredibly hard on your body.

I'd be interested in comparing our test results when you get yours back!

Gena

[DancingLight]

i'm glad i could make you all laugh! my dad was NOT laughing! well, he did, but just b/c i'm such a smarty pants and he knows he's just getting a taste of his own medicine back...

sunfish!!! i was kind of/kind of not kidding about the botox thing for us...thanks for the link...i checked it out. that would be cool if it worked that great and could be done. the procedure would probably seem like a piece of cake compared to other things! you really are a health nut aren't you??? thanks! i really appreciate it.

morgan...will you let us know what you find out????

emily

[morgan617]

As soon as I know, you will know. Why do you think you have it Corina? I think I do because I never get those episodes anymore and no rushes of adrenaline, like I used to, but I am so exhausted all the time and have horrible muscle twitches and contant nausea. It's my best friend now. I've also noticed it looks like I'm wearing browish eyeshadow in my eye creases and my chin is a weird color. Of course all of this would occur in my face and the test will be negative, so i can look like a weirdo for no reason. I love my life, Ilove my life, Ilovemylife.....

It was a honkin needle, I wouldn't let them put one that size anywhere near any other body parts!!!!

[corina]

Morgan,

I'm not sure of course. I think I might have that because when I do have a adrenaline rush (and that's really rare) iI immediately feel SOOOOO much better. I told my latest "dysauotnomia-guy" (who shouldn't deserve the title of doctor), but he just ignored it.

You really scared me with that needle, please, don't do that anymore

And morgan, I LOVE my life as well

Warm wishes,

Corina

[futurehope]

Sunfish,

FYI, my surgery for tomorrow has been postponed. But what I wanted you to know is that I did speak with Dr. S when the surgery was still set for tomorrow, and he said he would recommend to my surgeon that I be given hydorcortisone during and after the surgery to "prevent a crash" (even though I have not been taking the stuff on a regular basis due to reflux issues). So, that's Dr. Shomali's take on the situation.

[Sunfish]

thanks for the info re: Dr. S's take on the body's reaction to surgery...it actually makes me feel a bit better about what a disaster my body was after surgery...and makes me wonder why no one checked then.

i hope the surgery postponement is an okay thing for you? at the very least you'll probably be more relaxed this evening i'm guessing....

and yes, Em, i'm a medical/health nut. i think it's one of my coping mechanisms...finding out anything/everything i can (when i'm up to it) about anything that affects me or anyone else i care about...it's generally a good thing & it feels necessary at times when the medical world being so "out of the loop" themselves. i simply need to understand - as much as possible - what is or isn't going on in my body so that i can harass the docs even more! i also have a lot of friends in the medical arena so that helps(?!) too...

:-)melissa

[futurehope]

Sunfish, I just wanted to let you know that I saw Dr. K yesterday, and in addition to the hydrocortisone (which the endocrinologist recommended), Dr. K suggested that 500 - 1000 CC's of IV fluid admininstered AFTER the surgery would go a long way in my recovery. I have let my surgeon know of both of these suggestions.

[Sunfish]

future-

thanks for the update. i've actually always had lots of fluids during & after inpatient surgeries...and have ended up with them after other things (i.e.endoscopy, colonoscopy) once things have started to go haywire...it totally makes sense to me that this should be standard practice for folks like us, but i guess there's lots that doesn't make sense out there! i'm hoping there's no more surgery in the works for me but know b/c of my GI issues i'll at least have to deal with scopes of all variety periodically for life so will be curious to see what dr. k & dr. s recommend for that type of thing.

was your appointment with dr. k a good one overall? i see him myself this coming week...the first time since my vandy visit & since all the endocrinology testing/meds and the last time before i move, so there's going to be lots to discuss...lucky him:-)

:-)melissa

[morgan617]

Well I FINALLY got my results. My doctor thought his nurse had told me, but she was vague, so I was convinced it was abnormal or lost and since I had it at that horrible hospital that treated me so badly I assumed it was lost. Well, turns out it is just so weird he doesn't know what to do with it.

AM baseline is between 6-29 mine was 23 which would be high normal

However, after the injection, it dropped to under 23 and the second one barely went to 29.

If my adrenals were working properly, the counts should have at least doubled, however if I have adrenal insufficiency (sp) my baseline should have been below 6.

So he says my test represents a person already being treated for addison's on prednisone. I am not on them and haven't been on them recently enough to skewer the test.

So he is completely flummoxed by this. But this is my beautiful body. He is pondering what to do. I said, send me to an endocrinolgist. I am getting so weak I can hardly stand up anymore. There are no endos in this town that will see me without his consent, even though I don't need a referral.

I don't know if anyone's noticed that I've barely posted, but it's all I can do to get through a day at all. So I am hoping he'll turn me over, or stick a fork in me cause I'm done..... I think the only reason he hasn't is because everytime he has sent me to a different doctor they about kill me off and then send me back to him to clean up the mess. So he might just be worried about that, but I'm telling you even my oblivious hubs is saying I'm decaying before his eyes.

So that's my story and I'm stickin to it. Will keep you posted as long as I can hold my arms up. morgan

[Laura]

Hey Morgan... was wondering where you'd been! I'm sure they have likely tested your thyroid- have you had a recent test? I'm just thinking of possibilities such as a pituitary problem (controls all of your glands and hormones including adrenals). Something like hypopituitarism could cause some funky readings with adrenals and could mess up alot of other things as well. Have you had a CT or MRI to look at the pituitary gland? You must be feeling so awful. Hopefully your doc is consulting with specialists right now and is waiting for some direction from them. If things continue, do you think he might consider putting you on a small dose of prednisone just to see if it helps get you through till they figure out what's happening? Hope you hear from him soon- make sure to keep on him. Laura

[morgan617]

My thyroid has always seemed okay, but who knows, they are changing the parameters, so maybe it's not. I plan on calling him this week and asking for it or for a referral, because this can not continue. Thanks for your input! morgan

[Sunfish]

morgan -

good to "see" you but sorry you've been having such a rough time of it...i'd definitely noticed that you haven't been around & was hoping you were okay. i'm a little confused by your testing saga, although i can definitely relate to having docs tell me my results for various things don't make sense, don't fit together, etc...don't you love it? it doesn't even surprise me anymore...

but about the testing itself...i was looking through your earlier posts & couldn't find it (which doesn't mean it isn't there...sorry!), but what was the injection you received? and did your regular doc do it? i had any/all of my testing with an endo beyond initial bloodwork so that surprises me a bit but what do i know...did you had the basic test done which is the injection of ACTH? or the function test which is the insulin injection? my results to the first test were normal but to the second they are "parallel" to yours in that the #s are never dangerously low but the reaction was not right...

i know it's easier said than done, but i would push for a consult with an endocrinologist. not b/c there will be necessarily be a quick fix (although that of course would be nice!) or b/c there's anything to be alarmed about, but just b/c you deserve to have the best understanding possible about what is going on in your body. if your doc is scared of what a new doc will do to you, maybe you could promise him that you won't embark on anything treatment or med wise without also consulting with him?

hang in there & good luck!

:-)melissa