High ACTH 800+ while taking meds for Addison's

[HollyK1515]

I've had 3 recent ACTH tests results with 800+ levels. I'm currently taking 17 1/2 mg of hydrocortisone and .1 mg of florinef for Addison's disease (Schmidt's Syndrome). I do have trouble sleeping and night and often feel anxious and on edge. My weight has increase 10lbs since upping my dosage of HC from 15 to 17 1/2 (over a 2 month period).

Does the '0-60' range not apply for Addison's? I'm concerned about taking more steriods than my body needs.

Also, my husband and I are TTC. I've had 2 miscarriages over the last 6 months and I have a feeling the high ACTH levels and the miscarriages are related. My pregnancies are not pleasant...diarreha, queezy, salt cravings, etc. The crazy thing is that immediately AFTER I miscarry (or the day of), my ACTH levels are IN the '0-60' range.

Any ideas?

[rumpled]

I could not find if it was auto-immune, but I did find that it was often associated with other hormonal disorders.

Yeah, it took me a lot of endos to get help - but even a lot of neuro-endos, so still be prepared to find a few duds. Some require a referral from another endo or at least a pituitary tumor to get an appointment.

[New_Door]

Hi there -

I have adrenal insufficiency to the point where after complaining about worsening weakness for almost two years, I crashed so bad I couldn't get out of bed or lift a glass of water - that's when I was finally told I might have something other than "depression" (the catch-all for "I don't know or don't want to do any research, even by a couple of "endo's"), and around the same time my thyroid crashed and I now take 30 mg or HC in the a.m. along with 150 mcg of Synthroid, and then 10 mg of HC at 4:00 p.m.

Today, the internist who handled my medical while I had each knee replaced as a result of PSEUDOGOUT (why me???  :), said I might have an auto-immune like Schmidt's.  I was complaining about my knees for years, too, until I was bone-to-bone.  When all this started I was 41, very successful and "in great health" and I am trying to pick myself back up.

Anyone know how a definitive Schmidt's Diagnosis is made or if Pseudogout is also auto-immune?  I am so fed up with endocrinologists - THANK YOU FOR THE NEURO-ENDO TIP!!!

Susan

[rumpled]

I am not sure why DHEA would or would not be safe .... but large quantities probably would not be as it would produce a lot of androgens that could contradict pregnancy (as high testosterone may happen).

Just do not get too low - it can be dangerous - but yes, you want to be low.

[HollyK1515]

Thanks for your comments. My MRI was 'normal.' That's what the nurse told me, but I'm waiting to get some specific answers from the Dr. later this week. Yes, they did one with contrast.

I want to take as low a dose of steriods as possible...and still feel well. I guess that is the trick and we're still working on it.

I read (somewhere!) that taking DHEA replacement steroids wasn't safe while you are trying to get pregnant. So, I never asked about it. Maybe I should.

[rumpled]

BTW, from what I know, you are taking on the low end of replacement steroids - which is unusual! Most people I run across are taking a lot more. The avg. is around 20mg but you have to take what works.

[rumpled]

DHEA  is the androgen hormone the adrenals secrete. DHEA sulfate is the best test for it. Your other hormones can be off too - if your adrenals are effected, then the male/female hormones get zonked too.

My ACTH is not normal - my adrenals were removed to cure pituitary Cushing's after surgery failed.  I am being tested for Nelson's syndrome or adrenal rest tissue. I am having problems.

Was your MRI "dynamic" - dye injected while pics were taken? If not, it was not a proper pit MRI. Neuro-endos treat pit issues, no diabetes (some do though).

[HollyK1515]

Thanks for your reply. I am primary Addisons.  Doses divided 10/5/2.5.

I just had an MRI (with contrast) of my pit and am waiting results. I didn't know there was such thing as a neuro-endo! I don't think mine is.

What is DHEA sulfate?

Wow, your ACTH levels are so high. How do you feel? Does your Dr. consider that 'normal' for you?

My ACTH levels were that high only when I was pregnant. My Dr. kept pumping me with HC. I was taking 60+ mg at the end of my (successful) pregnancy. And I was as bloated as could be!

Do you have a pit issue too?

[rumpled]

Those with Addison's can have higher ACTH readings. The pituitary can be effected and if the feedback loop is not working well, it can be pumping more out. As well, your doctor should be checking out your pit just in case.

Is your endo a neuro-endo?

Cortisol effects the other hormones - such as thyroid, estrogen, growth hormone, etc. so make sure all of your hormones are being checked - and DHEA sulfate as well. That can effect your androgen levels.

How are you dividing your doses? Are you primary or secondary addison's?  Why did they raise your cortef - for the ACTH? (it does not work, mine is over 2000 and they tried to do that for me too... ha ha)