Abnormal tests

[morgan617]

The continuing saga of my endo stuff. My 24 hour urine cortisol was low. My pcp had actually called, just no one told me (My son is in the dog house )

Anyway, the endo got back from vacation yesterday and called me last night at 6:30. He said I'm not stimulated. I made a comment, but it flew over his head. Anyway, He wants to do another cortisol stim test and an insulin induced hypoglycemia test. Anyone had this one. I said it would make me sick and he said yes it would. Nice....

Every one is congratulating me because finally they are finding abnormal things. That is so twisted, but it's more twisted to feel this crummy and always have them say everything is normal. He thinks the endocrine system is very connected to the ans system. So we will see. He says regardless, I am going on hydrocortisone, because I absolutely do have an insufficiency.

So for the first time maybe something will go right. Keep your fingers crossed. I still refuse to get my hopes up and I hate the idea of more barbaric tests, but maybe after 50 years, we will get somewhere...maudryhopealot

[Ernie]

Hi Morgan,

Congradulation on finally having some positve tests results. It's not that I am happy that you are sick but I am glad they the doctors are starting to find what is wrong with you.

I had the hypoglycemia test 3 x during a period of 10 years and I really hate it because I have to fast 12 hours first, then they take a blood sample and then you need to drink 100 ml of liquid sugar. Then they take a blood sample every 30 minutes for 6 hours while you are still not permitted to eat. Fasting is a big trigger for me. It takes me weeks to recuperate from that test. Now I would ask to get an IV when the testing is done.

I think it is worth your while to do the test even if it's difficult. It will help with your diagnosis and treatment plan.

Ernie

[steph37822]

oops

[morgan617]

Thanks guys, the names are so wonderful! We've created a morganmonster. Ernie in this test, they inject you with insulin and induce hypoglycemia. I guess the blood sugar is supposed to go down and the cortisol levels up. Weird. He's guessing, my cortisol levels will do very little. Same kind of test I guess, just backwards.....morgannabanana

[JaneEyre9]

Hi Morgan,

Sorry to ask something that's probably been talked about before, but what are your symptoms exactly? What made you go to an endo? Glad you are getting some results! Good luck with the other tests.

Kristen

[MightyMouse]

Dear MorganTestsNormalAlot, we're going to have to change your name soon to MorganIsAbnormalAtLast. Here's to being abnormal, at long last!!!

[corina]

Heyyyy Maudreyhopealot!

I feel like having to congratulate you. After all this time!!!!! So there IS hope.

I really hope you let us know how this will end. So congratulations on being abnormal!

Corina

[morgan617]

Oh if only the shrinkers could see us now!!! I would like to thank you all for being thrilled I am abnormal! Love that last name Nina!

Kristen, I have had OI a very long time with lots of tachycardia, bp problems, and everything else, except I haven't fainted, (yet) I had an ablation of my heart in 2003 and then the cardiologist said oops, shouldn't have done that. My oh My, was he right, after he got his bmw.

Anyway, I used to get these horrible adrenaline rushes that would last a couple hours sometimes and in the past couple of years they have sort of stopped. I still have them, but infrequently and afterwards I feel awful for a few days. About 1 1/2 years ago, I started getting really weak, couldn't eat, lost 45 pounds, my fatigue has been beyond belief and my heart and bp are really wacko.

Well to make a really long story longer, my DOG was having all these symptoms just like me (no comments from the peanut section please) And the vet said, I think she has addison's. So she got tested and was alright, and I thought well, it's worth a shot. My pcp is really wonderful, but I live in the western U.S. where we live in the stone age with pots, but he will do anything I ask, because he knows I do a lot of investigating. And that's my story and I'm stickin to it.

All they ever do with me are standard tests and those are always normal, which is why everyone is cheering that someone is finally getting somewhere, including my pcp who will do ANYTHING to make me feel better. My first cortisol stim test looked like a person with addison's on prednisone, even though I'm not. So it was abnormally abnormal, which is why he is repeating.

Thank you for your applause, now pray these coming tests don't screw everything up. I love my body, I love my body, I love my body....morganmaniac

[Ernie]

Your so funny Morgan!

I surely hope that your next text comes out abnormal too!

Thanks for explaining the insuline/hypoglycemia test. I was not aware that they actually did that. Keep us posted on how it goes.

Ernie

[JaneEyre9]

Thanks for the info, Morgan! Man oh man, an ablation is the last thing you want to go "oops" on! That is really terrible!!

Also, I can totally understand the relief of getting back an abnormal test. I've been getting back normal blood and urine tests for years. I wanted to scream "This doen't mean I'm crazy! It means you're testing the wrong thing!" One time, after telling a doctor that I was dizzy, tired and pale all the time, she told me to "take a vacation and get a tan."

Kristen

[DSM3KIDZ]

If only they made a greeting card for an occassion like this!!!!!!!!!!!!!!! I never thought I'd be happy for you having abnormal tests but I am. It's all part of the puzzle, now it's time to start piecing it all together. Good luck with furthur testing.

Dayna

[morgan617]

Kristen, I'm guessing she wasn't a dermatologist....harhar. It's not funny is it. I've said that so many times. You aren't doing the right test, I am not crazy, I am too sick and now poor to go on a vacation.

It's a sad day when we cheer because something's wrong, but there you go. Good thing I have all you guys to keep me picking my brain instead of my rear and coming up with tests to tell my doc to do. The support and the funnies are wonderful....morganthegrate...ful

[Sophia3]

morgan

For low cortisol, do you look tan? If not examine the lines inside your hands...to THEY look tan. Mine do a bit and my doc noticed it years ago, but we have checked several times and cortisol tests 'normal' though it can spurt abnormally in between tests and not be 'caught' says my endo.

Also, be careful with the insulin induced test. I asked my endo about that years ago (forget the reason, now) and in my case he was afraid I would have a seizure...so asks your doctor the risks of that ...

I had seizures a couple times as a kid from hypoglycemia so maybe that is why he was leary of doing that to me. Maybe you are aware that that is a risk if so never mind.

I hope you get some answers.

[Sunfish]

lol...it's so great to have a group that "gets" the relief of abnormal tests. i've definitely been there, done that and agree that some pysch folks could definitely go to town. oh well...their problem, not ours. so...morgnotstimulated (odd way for the doc to put it, but hey, at least he called)...congrats on having a path to follow toward some clues/answers/pieces to the puzzle....

it's great that the doc is into the endo/ans connection. like i've already mentioned to you, mine feels the same...not that it's always a cause & effect (or visa versa) but that it's an avenue worth pursuing & is for some. for me i've been doing a bit better since on the cortisol but not enough to know definitively if that's the "why", especially since i started it not long after other med changes & being able to eat solid food again. at some point - when my external factors are a bit more stable - we're going to experiment a bit to try to figure out what it is/isn't doing for me, but regardless my endo says i will always need extra cortisol for physical stressors, i.e. surgery, procedures going forth b/c my body doesn't work right in that regard.

and that leads me to the test...

about the cortisol/ insulin stim test, it's really not THAT bad. not fun in the moment but when i had it done they were wonderful about making sure i was better at the end. here's how it goes...and IV port is put in so they don't have to keep needling you, although they do have to still do several finger pricks for blood sugar. you can't eat for about 2 hours before the test. i was able to lay down for the entire test...a big plus. they take blood & do a finger prick at the beginning and then give you an injection of insulin in order to force you into hypoglycemia. they continuously test your blood sugar and when it's low enough, aka when you feel really cruddy, they take blood again (for the cortisol levels). then they fix you up again with an injection to raise your blood sugar which makes you feel much better pretty quickly. i tend to react to things and i was okay other than a bit tired by the time i left. i stayed there - under their directives - for awhile and they make sure your blood sugar is good to go before letting you leave. the test is designed to see how one's body reacts to "stress" - largely physcial. hypoglycemia/low blood sugar is a stressor on the body so this is the stressor they're using for the test. normally one's body should produce more cortisol in response to this stressor, such that the second blood test they take should be notably higher than the first/baseline. mine was not but was actually lower. thus my now being on cortef...not a lot but such that it replaces the levels that should be in my body anyway. clear as mud? let me know if you have any other questions about the test itself....or anything else:-)

i'm glad you decided to post about the test results b/c i do think there is at least a potential relation to autonomic problems - directly or indirectly - and that's something that all should know...

i hope it goes without saying, but make sure & keep us updated,

:-)melissa

[Sunfish]

p.s. thought i'd add that my endo explained the insulin stim test as a test of interactive function as opposed to isolated function, which makes sense in terms of a lot of other autonomic issues too. i.e. my heart is ok in & of itself but its communication with the rest of my body isn't. so...the insulin test determines how the adrenals interact with everything else as opposed to just testing them on their own....confused yet??