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User Topic: ACTH Stim testing...anyone have experience?
sad12008
♀ Member
Member # 18179
Default  Posted: 11:51 AM, July 21st (Sunday), 2013View ProfileEdit MessagePrivate MessageHomepage

My DD(16) is scheduled to have it tomorrow. She has been online this a.m. and just came out saying uh-uh, no way, she's read all these horror stories about it and she's not having it done (of course it's scheduled for 8 a.m.!).

My feeling is that generally the negative is wildly overrepresented online. The test was almost represented by the endocrinologist as not urgent.

Let me throw the whole story out there: the situation that drove us to the endocrinologist was blood work that showed all her hormone stuff in the normal range, except her DHEA was really high...like 896 (if I remember correctly, the normal range topped around 400, =/-50). When the endocrinologist ordered labs, she ordered DHEA-S (a different thing), and it came back normal. However, the question remained, 'why the greatly elevated DHEA?'

DD has been going to doctors all summer...gyno, endo, ortho, rheumatologist...symptoms of joint pain and fatigue on top of longer-standing depression and anxiety.

I'd be worried about her generally, but I'm concerned about her senior year of HS (she's taking rigorous courses and is hellbent on going to a top-tier school), her college aspirations, career aspirations, etc. Currently most worried about what to expect with the ACTH stim test...any reassuring words?

Thanks in advance, and thanks for reading through all this!


"Everybody's life is hard. You look at life, and it's not a cakewalk. You've got to be able to bounce back." --Neil Young, father to two children with CP, another with epilepsy, and otherwise experientially qualified to comment

Posts: 3853 | Registered: Feb 2008 | From: a new start together
jo2love
♀ Moderator
Member # 31528
Default  Posted: 1:15 PM, July 21st (Sunday), 2013View ProfileEdit MessagePrivate MessageHomepage

I don't have experience with this test, but wanted to send mojo, strength, and good thoughts.

Posts: 33697 | Registered: Mar 2011
tushnurse
♀ Member
Member # 21101
Default  Posted: 5:22 PM, July 21st (Sunday), 2013View ProfileEdit MessagePrivate MessageHomepage

This test while I've only given it in an inpatient setting is not that horrible but can give a wealth of information and a direction in which to treat her. Living in the current state with pain, depression, fatigue is no fun. Of she has one really bad day with this test isn't it worth it to give direction on how to treat her?
Most folks I've done this with didn't really have a significant change in how they felt. That's part of the problem with adrenoinsufficiency.
What is she particularly concerned about?


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 7785 | Registered: Oct 2008 | From: St. Louis
sad12008
♀ Member
Member # 18179
Default  Posted: 5:33 PM, July 21st (Sunday), 2013View ProfileEdit MessagePrivate MessageHomepage

Thanks to both of you.

She's concerned about feeling lousy during/after the test. Concerned about the IV. Doesn't like the doctor. Her #1 thing is she feels that if the test shows something "off", the doctor will want her to go on steroids. She's very figure conscious and I'm thinking that's her issue.

I don't know what to expect from the test. Can you help me out?


"Everybody's life is hard. You look at life, and it's not a cakewalk. You've got to be able to bounce back." --Neil Young, father to two children with CP, another with epilepsy, and otherwise experientially qualified to comment

Posts: 3853 | Registered: Feb 2008 | From: a new start together
tushnurse
♀ Member
Member # 21101
Default  Posted: 8:46 AM, July 22nd (Monday), 2013View ProfileEdit MessagePrivate MessageHomepage

Ah so her concern is steroids.... IV's are no big deal, as long as you have a great RN starting it. If there is any issue, make sure you ask for the best IV starter they have. This is a common request, and will not offput the staff.

The steroids typically used in this treatment are low dose, and don't have the horrible side effects that the High dose ones do.

She obviously has something not quite right, and that usually screams autoimmune in nature. So no matter what they find she will most likely have to do a round of steroids at some point to see if she has improvement. If she is taking them and the fatigue, and joint pain, are better, she shouldn't be too concerned about the weight. For most the weight gain is temporary, it lasts only a little longer than the steroids do.
I myself have been struggling with figuring out what is wrong. My Dr's believe I have what is a seronegative (all blood tests for antibodies are negative) type of arthritis, similar to psoriatic. Since my labs are normal, and I only have one joint that has had a significant change they are blasting me with a 2 week round of steroids to see if it helps. If it does then I go on the same meds as someone with RA, or psoriatic arthritis.
Guess what, the joint pain is better, I haven't gained weight, and feel less fatigued, because it's shutting down that immune response.

Try to reassure her that it's much better to figure this out now, than when she is trying to keep up with college classes, and all the stress that can come with it.

(((and strength)))


Me: FBS
Him: FWS
Kids: 15 & 17
Married for 22 years now, was 16 at the time. .
D-Day Sept 26 2008
Fully R'd, and Happy Happy Happy

Posts: 7785 | Registered: Oct 2008 | From: St. Louis
InnerLight
♀ Member
Member # 19946
Default  Posted: 11:51 PM, July 22nd (Monday), 2013View ProfileEdit MessagePrivate MessageHomepage

Sorry i dont know this treatment but your post rminded me of an interesting radio segment on NPRs The People's Pharmacy about arthritis symptoms in kids and the connection to intestinal permeability

http://www.peoplespharmacy.com/2013/07/20/911/

Here's the nytimes article by one of the people interviewed, a mom who used a blend of regular and natural medical care to heal her son's symptoms with great success.

http://www.nytimes.com/2013/02/03/magazine/the-boy-with-a-thorn-in-his-joints.html?pagewanted=all&_r=0


BS, age 53, d-day 6-2-08, divorced after 17 years and 20 together. dating again, living in the sticks with a cat. It's taking a long time to create new dreams and a new life but it is slowly coming together.

Posts: 5723 | Registered: Jun 2008 | From: Rural California
Topic Posts: 6

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