ACTH Stimulation Test

EleGirl · 08-01-2009, 11:00 PM

Hello!
Has anyone had the ACTH stimulation test and can you tell me how it was and if it was done in your doctor's office or at a commerical lab like Quest?

I have an elevated DHEAS 550 (normal range upto 325). I have seen several endocrinologists including 2 reproductive endocrinologitsts. 2/3 of the endocrinologists do not think I have PCOS and one does. I am so confused. I have been on metformin for 1 1/2 years and it helps with my insulin resistance. My "periods", LH/FSH and vaginal ultrasounds are considered normal. However, I have hashimoto's, low HDL, low SHBG, high DHEAS, normal total testosterone, thinning hair, and some hirtuism and ut at times increased free testosterone. I think I may have LOCAH???? The current reproductive endocrinologist is trying to find out how to order the ACTH stimulation test. I NEED to know what my problem is to treat it properly and get this DHEAS down!!! I had some pain in my right side and mid-back... had a CT scan today from my primary we shall see..

Any thoughts?!? anyone .. thanks for your help!

miss62 · 10-03-2009, 01:59 PM

Quote:

Originally Posted by EleGirl

Hello!
Has anyone had the ACTH stimulation test and can you tell me how it was and if it was done in your doctor's office or at a commerical lab like Quest?

I have an elevated DHEAS 550 (normal range upto 325). I have seen several endocrinologists including 2 reproductive endocrinologitsts. 2/3 of the endocrinologists do not think I have PCOS and one does. I am so confused. I have been on metformin for 1 1/2 years and it helps with my insulin resistance. My "periods", LH/FSH and vaginal ultrasounds are considered normal. However, I have hashimoto's, low HDL, low SHBG, high DHEAS, normal total testosterone, thinning hair, and some hirtuism and ut at times increased free testosterone. I think I may have LOCAH???? The current reproductive endocrinologist is trying to find out how to order the ACTH stimulation test. I NEED to know what my problem is to treat it properly and get this DHEAS down!!! I had some pain in my right side and mid-back... had a CT scan today from my primary we shall see..

Any thoughts?!? anyone .. thanks for your help!

Hi,

I also have similar problem,my new endo has ordered ACTH test,she thinks it might be LOCAH as well I'm thin and all my blood works indicated normal Lh/fsh testosterone and some how dheas,its hard to say cause last year my only problem was slightly high dheas and now even though it is in a normal range,still is higher than my other hormones,
my main problem is severe acne some hirsutism and sudden hair thining and shedding.

how did your test go?

Thanks

ILuvGeorge · 10-05-2009, 08:12 PM

I had a ACTH stim test a couple months ago... It was done in the doctor's office (I don't think Quest can do it because it involves an injection of something to stimulate the adrenals, and only doctors can inject, as far as I know...). Anyway, they took blood, injected the stuff, then I had to sit for an hour. They took blood again, gave me juice and crackers and I was on my way. I dreaded it, but it really wasn't that bad.

What stinks about the test is that most insurance won't cover the injectable medication, and it's really expensive. CVS quoted me $160, and I ended up getting at a locally-owned pharmacy for $125.

I ended up not having LOCAH, just PCOS with high DHEAs (though almost all my other labs are now normal...).

miss62 · 10-05-2009, 10:39 PM

thats good news ...I'm so worried I might have locah or whatever adrenal problem and I'm going mad since there are only cortisone meds for that matter and they have so many side effects.
well for the test my dr didnt tell me anything,i live in canada tests are mostly free here dont know abt this one though.

EleGirl · 10-12-2009, 12:10 AM

Hello! Sorry for the delay in response/update!
I had the ACTH test done in Sept. For me they were looking to see if it was any of the 3 LOCAH deficiencies - 21 hydroxylase, 11 beta hydroxylase, and 3 beta hydroxylase. The MD who ordered did not think it would be the most common type because previous test was normal and usually women have this elevated at baseline. She thought maybe the others may stimulate due to my elevated DHEAS, thinning hair, and slight hirtuism.

The results showed normal baseline 17 hydroxyprogesterone, 11 deoxycortisol, 17 hydroxypregnenolone, elevated DHEAS and then 1 hour after the ACTH (cortsyn) medicine the 17 hydroxypregnenolone and 11 deoxycortisol went up pretty high from baseline, but the MD said it was not high enough to be LOCAH from 3-beta hydroxylase deficiency or 11 beta hydroxylase. The DHEAS went up a little from 550 or so to 625. The DHEAS half life is longer so you shouldn't see a real high increase.

The MD ordered the medicine at the pharmacy at the hospital near her clinic. I picked it up, covered by my insurance minus the amount I had to pay and then I brought it to the clinic. There the labs were taken, medicine administered, and labs taken again. It took a few weeks to get all the results back.

To me all my issues are related to my adrenal gland. some feel that some people with cetain types of PCOS have this same issues. One reproductive endocrinologist said I don't have PCSO but have adrenal hyperactivity, another said it is a type of PCOS. Both said only thing to do because I want to get pregnant would be steriods but they don't recommend it as they think the benefits will not out way the risks/side effects...

It is a bit frustrating that there is not a clear understanding of why this happens and how I can get my symptoms under control.

Keep me posted on your test and results! We can all learn from each other.

Good luck ladies!

Elegirl

miss62 · 11-16-2009, 01:33 AM

Hi Ele,
would you mind telling me what medication you are on right now.
I finally got my blood works.but not the stimulation test though.you were right the cost of injectable is not cover so my Dr is refering me to and endo in the hospitalin order to get it done free.
my 17-hydroxy progesterone and androstenedion were high with out the stimulation.
she told me I probably have NCAH
I'm so lost I thought when the hydorxy progesterone is up ur dheas is up too.but strange thing is my dheas was even lower than what it was 2 months ago.
I asked her whats the point its all androgen but she thinks I may do better on steroids,which I'm freaking out about it right now.
are you on any anti androgendo you know if flutamide would work?
I just dont wanna take steroid ,not even spiro my BS is already low and for the kind of acne I have ,I porbably need the highest dose 200mg.

EleGirl · 11-16-2009, 09:12 PM

Hi
I just typed a bunch and I think it got deleted!

Your issues should a bit different from mine! I didn't have elevated 17 OHP before the test or after.. but had elevated other adrenal steriods after the test and elevated DHEAS before and after. I wish someone could tell me how to make this better. I have had two miscarriages.... I have a period/cycle and no issues with LH/FSH, but can't seem to keep the baby??

You definently need the ACTH test... call your pharmacy to see how much the cortsyn (ACTH) costs for the test? I had to pay $35 with my insurance.

I am on metformin ER 1000 mg/day twice a day and 25 mcg/synthroid due to positive thyroid antibodies but have normal TSH, t4, t3.
I also take vitamins, prenatal, chromium 200 mcg/day, biotin 1000 mcg/day, vitamin d3 1000 IU/day, selenium 200 mcg/day, b12 (500 mcg/day) due to metformin and I don't eat meat.

I am frustrated that no one seems to agree on my issues or can help me.
Have seen many MDs.

I am trying accupuncture this weekend bc why the hell not.

Good Luck and keep us posted.

Elegirl