Cortisol Deficiency...a problem after surgery?

[morgan617]

hey there, futurehope i got your message but for some reason it won't go back, I'm working on it.

Melissa, yea I had the ACTH with the baseline draw and then the injection and a draw at 30 and 60 minutes. I'm really not sure why he isn't just saying go see someone, except some of them have train wrecked me. He has loads of guilt because he talked me into my ablation which was pretty much the end for me.

I just want to ask him to give me a little dose of prednisone a day because I feel so much better on it (except my gut)

I know my baseline was high, but the fact that it didn't even move with the stimulant has to be indictative of something. I know our tests are always weird.I just feel like I'm dropping off the edge of a cliff here and he's "pondering" what to do. I really don't think he understands how really crappy I feel.

I think I'll just call and ask and do that, just say we'll okay everything with him first. He ordered the test. He was certain it was going to be normal, because everything always is, but I think this is a little beyond him. Sorry, am just rambling around here, as brain is gone. Thanks guys, will just call on Monday. morgan P.S. washington state

[morgan617]

Melissa, sorry I had actually told him I wanted to see an endo because I thought there was something wrong with my adrenals. And he said, well he could order the basic test and that's how the saga started. brain foot. morgan

[Gena]

Morgan,

I had the exact same test back in April. I went to see an endo and he ordered the ACTH test b/c we thought it might give some insight into my POTS. My baseline was 14.2, then 18.7 after 30 minutes and then up to 21 after 60 minutes.

According to the parameters listed on the bottom of the lab report, I didn't really meet the guidelines of normal b/c it says it should increase by at least 7 above the baseline after 30 minutes and should exceed 18 (I did that , but barely), and the 60 minute response should be about double of the baseline - mine didn't

My endo was totally fine with my numbers and said he really looks at the baseline. He says the last thing he wants to do is put someone on a lifetime course of steroids for Addison's when they don't really need it. It's very hard on the body and organs, and has a a lot of longterm side effects, which I'm sure you know about. He also said the time of day you have the test can affect the results.

Mine was done around 3-4pm in the afternoon.

Anyway, bottom line, is I do feel my adrenal response wasn't exactly normal - like yours, but also not really typical of Addison's either. Maybe we just have tired adrenals. Let me know if you persue this any further. I am just tired of doctors, so I didn't bother delving into it anymore.

Gena

[DancingLight]

morgan....

yes, yes, yes, i did notice you weren't around much at all...of course i did! i just wanted you to know that..

i actually posted that under mary from oh's post about danelle and angela...so many people haven't been on much at all right now...like gena, who popped up tonight (!yeah!) and all...that i always hope it's being busy with 'good' things, not health junk.

i do really worry that you continue to feel worse and worse without being able to pinpoint something. very scary...

i don't know anything about your test results (sorry)...but i wish it would be a clue for you! it makes me want to go back and look at my ACTH stim test that i had done way back in '98 before i got my POTS diagnosis when we couldn't figure out what is going on. but, then, that would require searching through medical records, which i really hate doing!

know that we do miss you when you are away, and that i am thinking about you lots...

em

[Sunfish]

morgan et al -

isn't it funny how we (and the docs) get so used to tests being normal in the endless search for answers that we're surprised by the alternative? when i was in the hospital in november & every test that was done was showing something wrong (diagnosed with ulcerative colitis & an abnormal ovarian cyst) it was SO WEIRD. it was foreign to me to have the first test give a clear answer...usually it takes at least 2 or 3....or 9 or 10....

i don't actually know what my numbers were for the ACTH test other than normal. i see my endo on the 22nd so will find out then as i'm curious. for me it was the follow-up test that wasn't okay. i'll be curious to see if it's what your endo (when you see one ) will want you to do. gena, did anyone ever mention the test to you? i'm not implying it's something you should do but am just curious if your doc brought it up? i can definitely relate to the being tired of doctors...

my doc actually stressed the lack of side effects from supplementation (with cortisol/ hydrocortisone) if you truly need it b/c then it is only replacing what should already be in the body. obviously anything one takes merits consideration, but the small dose that is taken if the levels in the body are low don't carry the same degree of side-effects &/or dangers of taking cortisone for therapeutic reasons (aka higher doses).

i'm continually amazed by the many avenues there are to go down in terms of answers...

keep us updated on when/if you talk with an endo...

:-)melissa

[morgan617]

Melissa, my hubs has really bad narcolepsy (falls asleep uncontrollably all the time) which he takes ritalin for. I thought when he started it, he was going to be bouncing off the walls. All he does is stay awake. No other effects at all, because his body NEEDS it.

That's why I expected a terrible reaction when I got the ACTH, because it was going to really wig out my adrenals and I was going to have one of my episodes, which I hate, and then nothing happened. They said it was going to give me a big rush, but nothing. I believe that speaks volumes.

So since I know I feel better on prednisone, not crazy, I feel I must need at least a little. And this is the first test that has been out of whack to a degree that they are going oh my.

My merck manual says your baseline levels can be low or normal, it's what happens after being given the stim that's important, so I'm surprised your endo didn't at least give you a small dose Gena to see how it made you feel.

None of us want to take drugs we don't have to, especially since most of us don't tolerate them. But if it's going to help, I think feeling better out weighs the risk.

The manual also says that your levels must go up over 20 or you do have some insufficiency. Mine didn't even make it up 6. hmmmmm morgan

[Sunfish]

morgan-

i actually have been on ritalin, or rather concerta (largely extended-release ritalin), myself b/c of it's properties as a vasoconstrictor & some of it's stimulant effect. dr. grubb put me on it & i was on it for almost three years and while some of my friends might say i was bouncing off the walls b/c of how fast i talk, that was long before i was on the concerta i think it may have started to be problematic this past year when i was loosing a lot of weight as i was pretty jumpy/jittery at times & started to have sleep issues for the first time ever, & i haven't been on it since we re-did my drug coctail at vanderbilt, but it was the equivalant of magic for me when i first started it and for some time after...it raised my level of functioning immensely. so...that's a bit off-topic but i definitely can relate to your husband's experience!

i have so many questions for my autonomic neuro & my endo & my doc at vandy, all who i'll be seeing over the next month...good thing they don't know or they'd be running!

:-)melissa

[Gena]

My merck manual says your baseline levels can be low or normal, it's what happens after being given the stim that's important, so I'm surprised your endo didn't at least give you a small dose Gena to see how it made you feel.

The manual also says that your levels must go up over 20 or you do have some insufficiency.  Mine didn't even make it up 6.  hmmmmm  morgan

<{POST_SNAPBACK}>

Morgan,

Yeah, I agree, I'm surpised my endo didn't even want to try a low dose to see how I felt. What did you mean by it has to go up over 20? Do you mean the final result (after 60 mins) must be 20 or above? Or do you mean the final result must be at least 20 higher than the baseline? I guess because my final result was 21, my doc considered it normal. By the way, I didn't feel that rush of adrenaline either when they gave me the injection.

Sunfish - I never thought about taking a low dose, like you said. I'm sure it would be easier on the body. I could suggest it next time to my doc. I think I will research other natural methods of adrenal support before I go to that step though. And if those don't work, then I'll reconsider. I definitely want to do something, before it turns into full-fledged Addison's.

I know my adrenals are tired and stressed out. I had a hair analysis done about 6 years ago, before I ever had POTs - and the levels of certain minerals in my hair showed my adrenals weren't functioning optimally.I just think that maybe by supporting them now would be better than ignoring this until they are completely destroyed and dont' work at all.

DancingLight - Thanks for thinking of me. I've been on vacation for the last 10 days and away from the board. I came home to Panama City only to board up our house for hurrican Dennis. Our neighborhood got completely flooded. The police aren't letting anyone in until the water subsides, so we're staying at my mom's house for now. Ugh!

I miss everyone here. I feel like I have a lot to catch up on. Hopefully I'll be able to do that soon. Take care.

Gena

[Sunfish]

Gena -

so glad to hear that your being away from the board was b/c of vacationing but so sorry you had to come home to boarding up your house. we got hit here in maryland in 2003 by isabel & it was nothing compared to what you all get but was still pretty incredible. i'm glad that you all are safe & hope that the waters subside soon.

regarding the ACTH test result numbers, i'm pretty sure (but not certain) that the number is supposed to be above 20 as the end result (rather than go up by 20). so, yep, that would explain your "normal" result. mine was normal for that test too & i didn't feel a thing. my doc said only those with severe reactions generally feel something but that there are always exceptions; those who feel something but don't have abnormal results & those with abnormal results who feel okay. when i had the follow-up test (insulin stimulation) i felt HORRIBLE which was to be anticipated as that is the intent to a degree, even for those who end up having normal results.

regarding the small dose of cortef i'm on, i wasn't put on it based on my ACTH test but on the follow-up test which was more specific. i agree that i'd much rather not be on it for life (as i'd like to not be on any of my meds but that's another story...) and like i said am going to ask A LOT of questions when i see my endo in 2 weeks in terms of long-term, doses, etc. i've been on it now for just over three weeks and the plan was to give it a trial run for 2 weeks to see if it helped anything for me. b/c there are some positive things going on i'm sticking with it at least until my appointment but we'll reassess then. i'll let you know if anything exciting comes up...

glad to have you back & and to hear your safe even if wet & trapped. do you have electricity?

:-)melissa

[morgan617]

Actually, since a baseline of 20 would be normal to begin with, it would have to increase by twenty, so it would hit 40. I will write what the manual says,

Testing for adrenal insufficiency: Testing is performed by injecting cosyntropin 5 to 250 ug/IV. Normal preinjection plasma cortisol ranges from 5-25 ug/dl (138-690 nmol/l) and doubles at 30 to 90 minutes, with a minimum of 20 ug/dl (552 nmol/l) Patients with Addisons have low or normal values that do not rise.

I interpret this as it having to rise at least 20 post injection or you have a problem. My point here was that you could be in the normal range to begin with, but if it doesn't rise at least 20 ug's in the time frame, it is indicative of addisons.

Maybe you all interpret it differently. But that's how I read this. So I would say I was positive for it as is Gena. So although it appears normal range to begin with, or even low, it has to pretty much double to prove they are functioning. My humble opinion. Of course we can interpret the same thing a 100 different ways. So who knows. morgan

[Gena]

Sunfish, Morgan - I survived Hurricane Dennis. Spent all day with my hubby and step kids cleaning up the yard and the garage-- it got flooded. Luckily the inside of our house was spared.

Regarding the ACTH test, if it has to go up by at least 20 from the baseline, but it also says it must at least double, then if you have a baseline of 5 and it goes to 10, then you actually meet the criteria for doubling, yet according to the manual it must go up by 20, so technically you should reach 25 to be considered normal, if you start with a baseline of 5. It really is unclear and kind of contradicts itself. On the other hand, if it really means that you must reach at least 20 by the end of the test and must at least double, then the same thing applies for those that start out at a baseline of 5 and double to 10 - you double your number, but still don't meet the requirement of hitting the 20 mark..

So very confusing. Maybe we can find another source for interpreting these results! My end result was 21, so I barely met that part of the criteria, but it didn't double from mybase line of 14. So, I guess the question is does one have Addison's if you meet one test criteria, but not the other? Hmm.....a mystery, for sure.

Sunfish, I will ask my doc about the other test you had and see if he wants to do that. It doesn't sound fun though if it makes you feel awful. I was nervous as heck just doing the ACTH test. I really hate medical tests, I get tachycardia just walking into a doctor's office even if it's for something routine and mundane. I was never like that before I had POTS. Weird.

Later taters,

Gena

[Sunfish]

morgan -

i stand corrected if you have the actual info in front of you. generally i know more what i'm talking about before i ramble on but in this case i was just making assumptions based on who knows what...too bad it's not the post i made at 3 in the morning or i could blame it on that?

gena -

going entirely off of what morgan posted re: interpretation, it seems that it must go up by 20 AND double. i agree that it's a bit odd, but that's what it seems to say. i'm definitely curious now to know what my results were on this test!

about the test that i made sound so very appealing, i will say that the unpleasantness was short lived. they actually give you an injection & make sure you're back up to snuff before leaving & you're laying down the whole time. so while it wasn't grand, i felt very good about how it was done. and unlike my usual routine for tests that make me feel icky, i was fine when i left....no after-effects which is almost unheard of for me. so in that regard it was actually very easy/uneventful.

later taters back at ya (i like that...have a college friend whose nick name was tater b/c she ate do many potatoes:-)),

:-)melissa

[Sunfish]

gena -

almost forgot, but had to add that i'm glad to hear (& see) you survived the storm. bummer that you have so much clean up to do but i'm sure it's also a relief that it wasn't worse...

[morgan617]

I guess it is pretty confusing when you think about it. I think I'd go with the 20 points. If it doesn't bump it at least 20 points, there's a problem. I called my doctor today and said if he was going to "ponder" this until my next visit at the end of August, not to bother, because I didn't think I'd be here. So they said they are going to try and get me in this week. I will talk to him about it, if I actually see him and get some scoop from him. I will also ask if he thinks it's an OI related thing, or something not connected. I just assume it's all connected, but you never know. Will get him to do some other labs too as I'm as twitchy as a snake charmer with no horn to blow....morgan

[morgan617]

Here is a site I found which is the other way. This is too confusing, and I think I may have a crisis of some sort or another, like ripping my hair from my head or something..... Where's doctor Watson and Sherlock when you really need them?????

http://www.nlm.nih.gov/medlineplus/ency/article/003696.htm