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04/30/2012 01:58 PM

ACTH Stim 4.6 to 23 no such thing as secondary?

white27393
Posts: 4
New Member

Hi,

Looking for advice and opinions

First fasting Am Cortisol 7.0 6.7-22.6 range

ACTH 17 6-58 range

High dose Stim test

Base Cortisol 4.6 7:45am

30 min 18.8

60 min 23.0

Endo says this proves my adrenals are okay and has no idea why my cortisol levels are low. Constant fatigue is probaly due to depression. She also says I have polysystic ovarian syndrome and wants me to take Metformin for that. I am tired of the merry go round SmileI am considering trying Isocort on my own. Any advice?

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04/30/2012 03:03 PM
ssinnge
 
Posts: 598
Member

Hi, sorry you are having these difficulties. Well, first of all, if it were me, I'd see another endo. Are you aware that metformin is a diabetes drug? Do you have diabetes? I'm unaware that metformin is used for anything else. But it might be. You better look into that. And has your pituatary been tested? I don't have any pit problem, so I have primary addison's disease, but even though I have to live on prednisone daily, I am very fatigued daily. Secondary is when the pit gland is effected. I would definitely seek out another opinion. AD/AI is so rare, many endo's don't know how to really treat it other than do the cortisol level test and have us take cortisol.

04/30/2012 04:39 PM
white27393
Posts: 4
New Member

Thanks for the reply, no I don't have diabetes, that's one of my concerns taking a diabetes drug without diabetes. I don't know if my pituatary has been "tested" a year ago my ACTH was 92 but cortisol was okay and two tests since habe been acth at 20 and 17. I am under the impression that a good endo is hard to find, or maybe there is some kind of secret handshake I'm missing? Sorry to hear you have primary, did it take a long time to get diagnosed or did you wind up in the ER? Thanks for your time!

04/30/2012 08:56 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Careful with the isocort. If you have secondary you'll end up having to gradually increase the dose to eventual replacement levels. That's about 20-30 pills/day from memory!

Depression can also come from low blood sugar - that can be caused by low cortisol and hypothyroid.

"Okay" and "normal" are not always good terms to use. Within refrange doesnt mean you are healthy. Your 4.6 and 7.0 are borderline low to my mind, and probably what make you symptomatic. Be worth a look at thyroid and adrenal androgens as well but PCOS would seem to be the root cause.

Yes try a other endo. Maybe try to arrange an ITT. That tests the dynamics of the system more. Its not a lot of fun to be on full replacement so its worth exploring all avenues.

Bob (Australia)


05/01/2012 01:37 PM
white27393
Posts: 4
New Member

Thanks for the response Bob,So you think the PCOS may be related to the low cortisol and mind-numbing fatigue? My Thyroid and Androgen info follows

17-Hydroxyprogesterone 186 about middle of range

androstenedione 2.13 Slightly High

Testerone 73ng.dl Slightly High

Free T4 .8ng.dl

TSH 3.0

The PCOS diagnosis is confusing since I have regular cycles and don't have any of the typical signs. Symptoms fatigue, Hot sweating episodes alternating with freezing, joint pain, migraines, stomach issues, etc. Also have tumid lupus and celiac if that helps any.

Thanks for the adviceSmile


05/01/2012 01:51 PM
bob3bob3
bob3bob3Posts: 4213
Senior Member

Yes PCOS often manifests as AI symptoms. ie low cortisol and lowish thyroid. It seems both of these are down the bottom end, so it's worth a closer look.

05/01/2012 02:44 PM
white27393
Posts: 4
New Member

Thanks for providing confirmation, this makes me feel better about giving the PCOS thing a shot to see if it helps. If it turns out to be my adrenals I guess time will prove that out. I so appreciate your help!

05/12/2012 10:46 PM
LittleMissMerrySunshine
LittleMissMerrySunshine  
Posts: 1811
Group Leader

I always forget to come on this board and check things out, so I hope you are still around and see this response! (I am usually on the hypocortisolism board.) Anyway...

I have/had PCOS as well as AI, so yippee yi-yo you can definitely have both as well. Metformin was recommended because your chances of developing Type II diabetes are so dang high, the doctor wants you to go on it now as a preventative. Too bad (s)he didn't explain that to you! Mine explained it in great detail...then I said, "No thanks." Now, my doctor is really good, and I love her to pieces, and my reason for not taking it was a little different - I have a ton of GI issues, and metformin can be a real GI nightmare for some people.

I ended up having a full hysterectomy, because the treatment for PCOS contradicted my AI treatment. The meds to keep off fluid and help with hair growth will lower blood pressure...and I was at that time on three different meds to try and keep my bp up. Now that I've had the hysterectomy, I've found out my body doesn't absorb estrogen, so I'm in full-blown menopause, and my bp is high. Go figure.

I would definitely seek another doctor who is more open with explanations and can help you go through the process of testing and understanding you condition or conditions and medications.

Don't discount the PCOS, though. I didn't have a lot of the normal symptoms, either. In fact, my diagnosis came about because I suddenly started retaining massive amounts of fluid for no apparent reason, and after numerous tests, ended up at my ob/gyn's office. I wasn't amused with him when I "got another disease". In fact, I (very lovingly) told him he was fired! Smile But we took care of it, and I've been much happier since then.

Cynthia

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