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1833449 tn?1333849501

ACTH Stimulation Test Results. Help!

As a background, I have Hashimoto's Thyroiditis, for which I just began treatment. A few weeks ago, prior to treatment, I had an ACTH Stimulation Test run, the results of which are as follows:

Cortisol Basal 19.6 ug/dL
Cortisol Reference Range: AM = 3.4-26.9, PM = 0.9-15.8
Cortisol 30 min 26.7
Cortisol 60 min 21.2

Please note, this test was started at around 9:30-10:00 a.m. However, what does these results mean, if anything?  I've heard that upon stimulation, your Cortisol level is supposed to double, which mine did not.  Is that true?
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Avatar universal
The doc may see it as a failure as you did not double but some docs have a magic number that you may have hit... You dropped so the doc should take that as a failure in my layman opinion.

I hope you get on replacement meds and feel better soon.
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Avatar universal
Sounds very similar to my life the last4years.acth test showed 20.1 and then 30 min later 20.2...what should that indicate? Have a previous tramatic past for years ..then twin pregnancy changed something in me...praise Jesus the trauma is over.now im trying to get my life back and be a mommy to my 7kiddos.
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Avatar universal
mommabear0689
,
I know this is an old thread. But I was curious how you are currently doing? You sounded like you are going through exactly what I am going through. My cortisol, dhea and other hormones keep coming up low but I stimulate normal on the acth stem test! I just became hypothyroid as well. my primary put me on HC and I FINALLY HAD MY LIFE BACK for the first time in years! but then...he upped the dose and my cortisol ended up too high and made me sick again (after about 2 months of being on it). I was so freaked out that I got off the steroids but then I just got sicker. My endo does not want to diagnose me with adrenal insufficiency bc I stimulate ok even though my hormone levels are too low. !!! I am going to get into a doctor who does work in bioidentical hormones and adrenals and see what he says. But I really need help and I would love to here how things turned out for you and if the HC is keeping you well. Thank you so much!
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Avatar universal
Your doc gave you the dex suppression test. Technically you suppressed and to a silly doc, you failed, but to a good doctor, that should be a test of location, not exclusion - it more indicated a pituitary source (IF you have it) as no one test can rule Cushing's in or out - so your doc did you no favor.

You need more testing. That one alone is not enough and does not do enough - even the guidelines say do two or three different tests. The docs tend to do this one as they think it is easy (hah) but I failed ALL dex tests and my pathology shows I have it and know many people in my boat.

Get copies of all your testing - and find a decent doc.
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Avatar universal
What if my endo thought I had cushings and gave me 1mg dex and my cortisol came back 1mcg/dl. I have hashimotos and pcos. But the lastest thyroid panel showed a tsh of .499 it was just 7 six months ago. I'm still sick Alot and really tired my body aches it's so hard for me to do anything with out getting exhausted.
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Avatar universal
What if my endo thought I had cushings and gave me 1mg dex and my cortisol came back 1mcg/dl. I have hashimotos and pcos. But the lastest thyroid panel showed a tsh of .499 it was just 7 six months ago. I'm still sick Alot and really tired my body aches it's so hard for me to do anything with out getting exhausted.
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Avatar universal
Thank you so much for your advice. You are just as sick, if not sicker than the rest of us. The stress you have trying to help others can not be good. Thank you again. Take care of yourself, others will find a way. You are truly heaven sent though..:)
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Avatar universal
Treatment for primary and secondary is the same. Not everyone has a reaction to the stim test - some feel nothing - some get sick, some flush - it just does not matter.

I am getting sick - running around must have met up with someone with a cold - immune system is low.

I would corner him on the injection - make sure it is an ACT-O-VIAL and don't let the pharmacy tell you that they don't have it - they always change part numbers on the dang thing. The act-o-vial has the powder and fluid in one vial, while the other one makes you have fluid and powder in two which means either you as a sick person (and believe me, as a person in that condition, YOU CANNOT THINK) has to prep a needle, and work with two vial is next to impossible or get a total newb to to it - the other one self preps and is just one vial so it is a bit safer for us. Since most state laws will not allow EMT or EMS to give us the shot (gee, thanks for that!!! it only saves our lives!!!), you have to know and people in your house have to know - I keep instructions in my kit.

It is a handy thing to have just in case.
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Avatar universal
I know, Im so confused. I do have brown patches on my face, and black looking freckles. I have not been in the sun all summer, but it looks like I have been to the beach a couple of times. I can get really dark during the summer, beach, horses, yard. But I have not been able to do that. I loose my tan very quick too, so Im really white during the winter. I dont know. Would I have felt better with the injection if it was primary?

Im reading, Im reading so much, my eyeballs are about to pop out. I read other peoples post, thats where I see a lot. That damn book was a waste of 20$. I laid it down, half way through. These people she's talking about is not me at all. I'm gonna keep reading post though.

Well, he did give me a little extra. Im suppose to take 10 in am, and 5 in pm. He gave me 60 tabs for 1 month. Not to much to play. The injection no, and I cant understand that. Like I said, he either gonna step up, or Ill step out. Of course, Ill wait till I have that RX in tow...LMAO..I hope you have a wonderful day.
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Avatar universal
I would start to hunt around for another doctor. BTW how how how can you increase your dose if needed IF you don't have any extra in your script???

Did he give you an emergency shot (solu-cortef or solu-medrol acto-vial) with needle and something like zofran or phenergan so you don't hurl? Check out the links and see that you need one - as well as many other things. I get a headache when I am low - you could be in perma-low.

Check out the links - there is a lot of vital information there.

There is a LOT of difference between adrenal insufficiency and the fatigue thing - I don't believe in the fatigue school.

V-8 is good (if you have low K as well) and pretty much any food that attracts  you is fine - just try salty stuff - that will help you.

They should not have done the stim test if you were sick.

I find it strange re secondary if you have the spots... higher ACTH kinda makes that a bit... well?
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Avatar universal
Good Morning. Just wanted to let you know, that in my reading this morning, I have found out that my AI, in secondary. (which my endo said) but i could not understand how without further testing. I've also found out this test can be messed up. I was suppose to be there at 7am, for a 1 hour calm down. First, my alarm clock did not go off, I was made at my-self, and my husband (I wanted to re-schedule) then it was a rush to the hospital (which is 45 mins away) they took me straight back, and started the IV. Im sensitive to new medicine, so I was scared if I was going to react. I was just in the hospital where thr=ey stuck me 5 times trying to get a vein (dehydrated) so I was nervous about that. I had a cold on top of it. The blood draw was suppose to be at 8, but because I was late it was 8:45. On top of me being sick, my nerves were a wreck!! Ok, stimulation test values again with 0.25 injection.

13.91 before
24.68  60 minutes after.

My Enod said it was secondary AI, I finally read this morning on someones post where they did not feel anything after the test. All my symptoms went away for 3 days. Of course less, and less on each day. Ok, so now I feel my test was screwed from the get go, but i understand why its secondary. So now, I want to know WHY? What else is wrong with me. He will see me this week, and he will give me some answers, or I will find another Endo. This is just all crazy! Oh, I felt yucky again this morning, and I took my magnesium, and potassium. I do feel a little better.

Temp this morning was 97.6, BP was 90/58. 4 hours later my temp was 99.1. I did not take my B/P again though. I dont know, its just all confusing. I think its a shame, they put you on HC, tell you to double dose if sick, and get a medical alert bracelet, with this stuff on it. And your left with that. Grant it, I know its my fault for not asking questions, but what he does tell me is an overload. he lost me at medical alert bracelet. Well, its not like my mind is working like it use to either. :)

Im gonna right down all my questions, and the test I want done. We'll see!
I hope your feeling well today. Ill talk to ya soon. Now I get to go take something for my headache. Is it ever ending?

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Avatar universal
Hey rumpled, I hope your feeling well today. No, no extra. Even though he told me to double if not feeling well. I'm not even sure about what he means by not feeling well. I think my body has already adjusted to the small dose. Every day now, about 3-5 hours after my morning dose. Im nauseated. When I make it through that, then I have a sense of not feeling well/down, about 2-5. I hate to see that time of day come. My lower back/pelvic.hips, and knees are starting to hurt again, if I do anything. The last 2 days, Ive started with the vertigo again. Yikes, just when I thought it was getting better. Yes, my BP runs real low. If systolic is 100, Im shocked. Its been in the 90's, and even 80's. Heartrate is back up also. Im not sure where your from, Im from Florida. The heat kills me. For 9 months, I could not even go into the sun. If I sat on my porch, in the shade, for longer than 5 minutes, I would be soaked with sweat. Its been bad.I've been praying for some cooler weather, but i read somewhere that people are also sensitive to the cold. What the crap, is all I keep saying. I just told my husband yesterday that I think its time for another hospital stay. The fluids help me so much. It seems like I cant stay hydrated, the more I drink, the more I pee. I bet a used a whole roll of toilet paper in one day. I went to Books a Million today, to look for some information. 20 million books on everything, except adrenal insufficiency/addisons, or cushing's. REALLY? I did find 1 book on adrenal fatigue, I bought it for the diet tips. So far, I have not read anything that fits me. Im friggin tired as crap, and cant sleep. I've laid in bed so exhausted, praying for sleep, just to find myself crying because i could not. I have been able to sleep a little on the HC.

It really scares me though, Im reading, and the more I read, the more questions I have. It scares me when I get nauseated, vertigo, abdominal pains. I know my dosage is not right, but I dont see my Endo again for 3 weeks. I dont want anything to happen to me when my kids are at home. I think Im gonna call my Endo on Monday, and get in sooner, and Im gonna ask him if he can plan my care, and educate me. If not, Ill find another one.

As for friends, I have over 400 on my facebook account. I asked 2 days ago if anybody had adrenal insufficiency/addisons, or knew anybody that did. No, no, and more no. Some people had not even heard of it. Your the only support I have. Well, my family is very supportive, as is my husband, but they dont know what Im going through.

I did the core body temp thing I read about today, I just played with it today, I did not get the thermometer till this after noon. My horse got sick back in December, and I had to use my old one on him.LMAO, of course when he got better, its in the tack barn now. Sorry, I got sidetracked, anyways, it said to take your temp 3X a day. Im sure you know this, so I;; make it short. The first temp I took was 97.6, 3 hours later it was 98.9. Tomorrow I will start a log.

Im on a Magnesium/Vit D/Iron supplements. I do have some over the counter potassium. If I get nauseated in the morning, Ill try that. Im going tomorrow, and getting me some V8 juice. I can not stand water, ot the thought of drinking it everyday for the rest of me life. Any other liquids you can suggest? What about your appetite? I have to make myself eat. That has become a chore also. Well, I've had a problem with my appetite for a couple of years now. I guess I just thought the HC, would help.

The HC, has given me back so much of my life back, I guess I cant complain. At least I have the strength to take care of my basic needs now, and actually get dressed.

I just want to say thank you again, I feel like your the only person I have right now. I look forward to your messages. Heres to a good day tomorrow..
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Avatar universal
I totally understand.

Nausea is a sign, at least for me, that I am too low and need more. I hope you have extra meds and were given guidance on how to stress dose. Sometimes you only need a little bit - 2.5 to 5mg and other times you need to double up. The crux of the battle is sodium and/or potassium. So when I get low (nausea) I head for the sodium and that can bring me up as well. How is your blood pressure?

I think you may find others locally like you - there are quite a few of us around with endocrine issues. Where I used to live there were a lot of us, I have not found as many where I live now.

I don't know so much about the actual location of the kick, but the trauma itself often is a kick start as the body cannot recover like it should. A lot of us compare notes and many of us have had something happen.

We all have our up and down days - and oddly weather effects me greatly (ugh). Have you read through the health pages on medic alert, dosing, stress dosing etc?
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Avatar universal
Oh my gosh, that's how I felt. I did, I thought I was slowly dying, and they could not figure out why. I even talked it over with my sister, and my husband about what I wanted for my kids. I even told my husband, if I could not ride by October, I was going to sell my horses. That itself shows how bad off I was. My horses are my love. (besides kids, and family)

My PD stated I was on a low dose. I'm feeling it now. 2-6pm, are my worst hours. It was my mornings until I started the HC. My nausea stopped after starting the HC, but the last few days I've been getting nauseated, about 2-3 hours after being up. Not quit sure what that is all about. I eat a little something, and it goes away. I guess Ill find out soon enough. This is all so complicated. The worse thing is, you know nobody who has it. At least I don't.

Yikes, you have got it pretty bad. People just dont understand how bad you feel this stuff. I'm very curious to find out if mine is primary, or secondary. Lord only knows what else I've got going on.

I was actually kicked by a horse in the groin, a few months before I started getting sick. I'm just wondering if that could have damaged one. Who knows.

Like I said, any info, or advice would always be nice.
Im glad to hear from you, its nice to chat with someone who knows what your going through. I will pray for strength for you.
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Avatar universal
Your dose is a tad on the low side IMHO - check out the links in the health pages for some dosages that other people take.

On HC, the long term side effects are not as bad as say, pred or dex. And well, we need it to live - so that is something!

I have been AI since 2006 - my adrenals were removed to cure Cushing's so I am a bit primary and secondary too. I am panhypopituitary.  The Cushing's rather destroyed me - so I am just doing what I can but I won't ever be what I was - which pisses me off. Some people do very well - like acrobats and all - and others are on my spectrum so it can vary pretty greatly!

I have the tan and the icky age spots. It is just the luck of the draw how the ACTH reacts and if you get a nice even tan, or you get dirty knuckles and hands that look like you are 90. If you have a tan BTW - you are likely primary - your pituitary is trying like heck to signal your adrenals and your adrenals are just not doing the job. If you were secondary, the tan would not be there at all - the pituitary would not be putting out any ACTH. My ACTH is my tumor (tumor tan!) not giving up the fight - I just don't want to nuke the dang thing unless I really have to.

Dynamic MRI is the best - try to get to a pituitary center where they know how to do the scan - as it requires skill.

It is very very confusing at first. I was so lost - but I finally learned when I realized I was going no where and my time was getting short and it was learn or plan my funeral.
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Avatar universal
Oh yeah, I have more testing next month to find out if its primary, or secondary.(which he thinks it is) Not sure why he's waiting so long. I'll make sure I have an MRI, CT, U/S of the adrenals (which ever is best) My MRI was W/O contrast, they were more looking for lesions on my brain I think. It said at the bottom, that pit. was ok. I'll also make sure, the right one was done. Thanks again for all your help. Any suggestions, advice, information you might want to share with me, I'd love it. Im really trying to learn all i can, but it can be very confusing. Thank you again..:)
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Avatar universal
Thank you for your response. I seen my PD this morning. Hes the one that has hospitalized me 4 times. He knows I've been sicker than a dog, on my death bed for 9 months. He ensured me that if it was any other disease, or infection, that injection they gave me for the stimulation test, would not of made every one of my symptoms go away. I had the best day that day. It was the first time I groomed my horses in 8 months. It was beautiful.

Im on 10 in am, and 5pm. I dont have my whole life back, but I have 80%. Ill take that. I have found out though, you do have good days, and bad. I thought once I was on medication, my life would return back to normal. I guess it never will, but like I said, Ill take what I got. I was really sick those 9 months. I thought I had cancer or something, they were not finding, and I was slowly dying. The more I read, the more I learn though. I now know my life will never be the same, and I'm working really hard to accept that. Everything I love to do, is in the sun.

As for double hormones, the Endo did check to make sure they were compatible. I'll quit those first if I had too. I'm a nurse, so I know long term steroid use is not good for you, but 10 good years is better, than 50, the way I felt 2 weeks ago. Kinda damn if you do, damn if you dont.

Im understanding its a long journey, and you find out more on the internet than you do your Endo. How long have you been AI? How close is your life now compared to before you got sick? Just reaching for some hope I guess.

One more question for you, I dont have this all over tan, but I do have these brown patches on my face. I"ve also developed these big dark looking freakles on my arms, back, and legs. Do you think that has something to do with AI? They actually starting forming about 1-2 years ago. I blamed it on old age. What do you think?

I hope you have a better day tomorrow...:)
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Avatar universal
MRI scans can often be read as normal, but not be - same with adrenal. Did you have a pituitary MRI (with and without contrast, dynamic technique so images taken with contrast?) ? Smaller tumors can hide between MRI slices - and radiologists can miss things.

I had my adrenals read as normal before AND after they were removed - and the pathology said they were enlarged.

I hope the HC dosing is done correctly - twice a day is good, but the bulk should be in the morning, and a tiny bit in the afternoon with a nothing at night so you can sleep and your bones and all recover.

Hormones just are not simple and if you have more than one issue, it can be pretty complex.

The medic alert bracelet is a good idea - there are some guidelines in the healthpages (to the right).

I am here usually once a day - I try - but I am a patient myself and I have my up and down days too.
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Avatar universal
i just researched parathyroid, just dont sound like what i have. I went back over my labs, my calcium was only low a couple of times. They did not ever put me on a supplement for that. Im on Magnesium, Iron, and Vit D. supplements per MD. I don't know, Im just starting to get down. 9 months, 4 hospital stays, 10000 test later; I still dont know anything, except HC makes me feel better. I just want answers. Im not a A=C person. I have to know what B is. THank you for your time.
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Avatar universal
I also had a complete hysterectomy at 31. Im on HRT. I also have gastroparesis. Not sure if that has anything to do with it.
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Avatar universal
Thank God you answered. I just went through all my labs. No they did not do an ACTH, and no imaging on my adrenals. They did do a thyroid uptake scan which was normal. MRI stated pit. was normal. The Endo said he thought I might me ACTH, because I felt so much better after the stimulation test. He left me on HC, because he believes its something. But did not order anymore test. So Im on HC twice a day, suppose to get a medical alert bracelet; and he believes its something really?
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Avatar universal
I would think that low calcium - which could be a parathyroid issue could be significant (it should never ever be low) and the low D goes with that - both of those could account for many of your symptoms.

There could also be a separate problem with the aldosterone and the cortisol - and you can have a normal test and still be sick - the adrenals can be on the verge of failure. Craving salt is a tip off that you have probably low cortisol.

Did you get any imaging or any adrenal antibodies - any ACTH?
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Avatar universal
I also have problems with my vision on certain days. Other days it is fine. Please help..
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Avatar universal
I'll try to make this short. In late December, i started getting sick. Dizziness, elevated heart rate,nausea. Since then Ive been hospitalized 4 times, with more symptoms surfacing. Extreme fatigue, lower back/pelvic/hip, and knee aches, unexplained fevers, anorexia with weight loss. Heat intolerance. The sun hurt my eyeballs, excessive sweating, low blood pressure, muscle weakness. I was so fatigue, and could not sleep. Day or night. Night I would wake up every 2 hours. I craved salty foods, and sweets. Excessive urination, abdominal pain, diarrhea, headaches, and short term memory loss, concentration, and brain fog. I thought i was dying in those 9 months. My sister had to take care of my kids, because I did not have the strength. I could not even take care of myself. Basic care was a chore for me.(brushing teeth, shower, dressing) I was just to exhausted. I stayed out of the sun, I wore dark sunglasses if I had to go somewhere. I lost my job. Im sure Im missing something. But anyways, all my test, and labs came back normal. I thought I was going crazy. Well not excatly normal. My potassium would run low (which I blamed on the fluids they dumped on me) my magnesium stayed low. My Iron was low, as was my calcium, and Vit D. My TSH was .317, .946. my last TSH in the hospital was.317. My free T4 was.90, .80. My T3 was2.5, and 2.6.My Aldosterone was <1.0. My cortisol levels were 4.47, and 5.19. My PD sent me to a rheumatoidologist, he wanted to diagnosis me with Chronic Fatigue syndrome. I excepted that, as to me thinking I was crazy. But that's when I started the excessive sweating. I went to an Endo, he did the stimulation test; my basal cortisol was actually 13.91. But we were running late, I had a cold, and I was very nervous. After the 60 minute mark, my Cortisol was 24.68. He also did an Ultrasensitive TSH on me, and it was .85, T4 was .90. This is were is gets complicated, the test was done on a Friday morning, all my symptoms were gone, after that injection. I mean everyone of them. I went back to him on Monday, and I told him. I was actually crying, because i had just enough to remind me of what my life was before. He automatically put me on HC. I have done more in the past 2 weeks, than I did in 9 months. My problem  is, he said my stimulation test was normal, but since the steroids help, he knows its something. OK something really? He has ordered no more test, and to F/U in 2 months. What is going on, does anyone know? I was put on steroids twice a day, told to get an alert bracelet, and it's something!! Please help me, Im dying to know what is wrong with me. I do go to my PD tomorrow, and I found an Endo at the Cleveland Clinic that specializes in AD. Please tell me what you guys think... Thank you.
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