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high ACTH 7 years post BLA
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high ACTH 7 years post BLA

My ACTH last year was 2200...this year 1100. MRI (T1) last year was normal. My symptoms are essentially constant headache (worst in middle of the night and morning) and anxiety. After starting GH 1 1/2 years ago, I seem to no longer have bipolar episodes. My LH, FSH, and GH have been gone for about 20 years. The BLA (2002, 2004) and bilateral oophorectomy 2003 didn't affect what turned out to be an ectopic testosterone secreting tumor, which pooped out a couple of years ago. I have some hyperpigmentation.

From what I've read the ACTH this high so long after BLA could be from pituitary pituitary (hyperplasia, adenoma (microadenoma?)) or ectopic.

So, what to do?
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657231_tn?1390151580
I have had my ACTH tests drop over 1000pts myself due to lab handling - as in the lab did not handle my test correctly. So you may not have really dropped at all?

You had a T1? MRI? I have heard of 1.5 and T3 but not that magnet - that is pretty weak if so - was that an open MRI?

Why would anyone remove adrenals for a testosterone secreting tumor? So you had high testosterone, and they diagnosed it as Cushing's (which to me makes little sense since high cortisol suppresses testosterone... ) so I am super confused.

ACTH this high is from not having the adrenals and their could be a secondary source - so what tests have your doctors done to find the tumor other than an MRI? Octreoscan, CT scan, PET scan, ???
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Avatar_f_tn
I was never diagnosed with Cushing's. My first adrenal on CT looked like it had an adenoma...when removed in 2002 it turned out to be macronodular adrenal hyperplasia. Several NP-59 scans were done, but no tumor showed up.For years my testosterone fluctuated between 400 and 600 and I couldn't function. In 2003 I had bilateral oophorectomy....in 2004 the other adrenalectomy. Several years later, the testosterone pooped out. I have been on thyroid since 1988 for autoimmune thyroiditis....but in the early 1990s my FSH and LH dropped below premenopausal levels even though I was postmenopausal and My TSH has been suppressed too. A couple of years ago I finally prevailed on an endocrinologist to test GH. It too was almost gone (with l-dopa stimmed to .2 when normal is to 8.0). I feel better on GH,and now sleep better and for the past 1 1/2 years I have constant anxiety and headache (the headache tends to be worse in the middle of the night and early morning) instead of depression, From 1998 I had mostly severe or moderate depression and insomnia  but I also had manic episodes (never had insomnia, depression or mania before all the endocrine stuff). None of the antidepressants, etc helped. Probably what I called T1 MRI was really 1.5...they were done with and without contrast, but the one in 2008 had the comment that if there was "biochemical basis" they could do a dynamic MRI. It wasn't done, perhaps because I got manic and stopped seeing that endocrinologist....but perhaps because he, like the endocrinologist who had me do another pituitary MRI in 2009 that looked totally normal, accepted the totally normal MRI despite the ACTH of 2200 in 2009. I don't have a lot of darker skin. I notice the overall duskiness and some freckles, but the new endo I see lloked me over and didn't think I needed a dynamic MRI when my ACTH this year was 1100. He said there's a new way they're doing the test that's more accurate...maybe...because my blood pressure was high and I was sweating while I was in his office, he lowered my thyroid slightly, but I suspect the sweating and blood pressure was  what happens intermittently and isn't from thyroid...especially since my free t4 was .8 (bottom of range) and my free t3 was below mid-range. However, he is checking ACTH again when he rechecks free t4, free t3, and tsh (yes, he's hoping for some TSH). Anyway, after four weeks on slightly less thyroid (100 t4 and 25 t3 instead of 3 grains Naturethroid) my "fibromyalgia" is worse and he said to test in two weeks rather than another four. He was the one who agreed to my using 5 mg lodotra (plus 5 mg hydrocortisone in the morning) and fludrocort instead of hydrocortisone and fludrocort... the lodotra is an improvement  When I emailed him commenting about the macronodular adrenal hyperplasia he said "AHA! Carney's", but I don't think so...I don't have the other symptoms of that, but even though my second adrenal looked normal, I could have had subclinical or cyclical Cushing's or maybe the testosterone secreting tumor was ACTH dependent (that's possible)...not very much weight gain, maybe 30-40 lbs. Anyway, my husband thinks that even if I have a pituitary or ectopic ACTH producing  adenoma, I shouldn't do anything about it (unless, I suppose, I get eye symptoms of a macroadenoma)....and he wants to take this endo's word on whether to do a T3 MRI or not. I see him 9/15 unless I move the appointment up when I do blood tests in 2 weeks. That's the current situation.
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Avatar_f_tn
Did you ever try cabergoline or selegiline to lower ACTH?
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657231_tn?1390151580
I am severely jealous over the NP-59... I tried to get that scan but the agent now does not exist so I cannot find out if my near 4000 ACTH is rest tissue... they did find a lung lesion but they decided that was not it as the PET scan did not light up.

High ACTH, a tumor and hyperpigmentation is Nelson's syndrome (there are different definitions tho)... Carney's is something else.  Are your cortisol tests elevated? You still have one adrenal? Have they tested you for a pheo?

Did they remove the adrenal due to high dhea-s levels?

A 3T MRI is no big deal - so why is your doc holding up on it? It could be the meds causing the weight gain. I have the fibro too - the meds are nasty.

Are your knuckles *dirty*? What do you mean by hoping for TSH?

Nope, no cab - the doc is trying me on a trial of dex... we shall see if my waistline explodes.
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Avatar_f_tn
Don't envy me the NP-59.I had several NP-59 and venous sampling that showed nothing....they were looking for the source of the high testosterone. After removing both my adrenals (2002,2004) and ovaries (2003) the conclusion is that it's source was ectopic. After several more years, it pooped out....thankfully.

MyLH, fsh, and probably GH and tsh had pooped out in the early 1990s for no discernible reason . At that time I was postmenopausal and on estrogen and thyroid since 1988. I've never been diagnosed with Cushing's. I assumed the weight gain was from hypothyroid.  I have no cortisol of my own, only ACTH. My guess is that because the nondynamic MRIs show nothing, the assumption is that any acth secreting tumor is no biggie. As for the endo "hoping for a tsh", he means that if he lowers my thyroid and gets a nonsuppressed tsh he can use that tsh to dose my thyroid. This won't work....my free t4 was already rock bottom of the range and my free t3 was somewhere between bottom and mid-range....I doubt the thyroid dose I was on was responsible for the sweating and raised blood pressure. This endo has been at it for 45 years and seems to be a decent human being. He's the first one to mention Nelson's to me...at least he's paying attention. Besides, after years of bipolar (now since on GH and sleeping pills, "only" anxiety and headache) the psychiatric stuff convinced my family  or at least my husband that the psychiatric stuff has nothing to do with the endocrine. I asked the psychiatrist I see about cabergoline and he said it can cause mood elevation and psychosis....so, not a drug to be trifled with.....neither depression nor mania is fun. For all I know, the high testosterone (400-600ng/dl is mid-range male) and high ACTH without any GH and constantly interrupted sleep may be the reason for the onset of psychiatric stuff. It's unusual, but not impossible (10%...probably from medical reasons, I'll bet), to become bipolar in your 60's.. By the way, there's some research about curcurmin shrinking pituitary tumors, at least prolactinomas.

Did they do an IPSS to get an idea if your ACTH is from your pituitary? Did anyone ever suggest Gamma Knife radiation to you? One of the women who had two pituitary surgeries with Dr. "L" in Seattle is now free of her Cushing's. He seems to be more sensitive to people with repeated pituitary problems. I'm in Los Angeles and have seen Dr. "F" but I didn't find him helpful. Have you seen or talked to Dr. "L"? If you want more details, email me....OK?
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657231_tn?1390151580
They don't make the agent for NP-59 anymore - so no one can get the test... it bites.

How many pituitary centers have you been to for other opinions? Is your endo a neuro-endo? The pituitary stuff most certainly gives emotional issues - so give your hubs a head up - there are articles on the emotional aspects of the pituitary. If the doc does not know that, move on - you are not being treated effectively.

You need a dynamic MRI - a regular MRI is eh - I had non-dynamic MRIs for years and then got a dynamic one a little hidden tumor showed up after 12 years. So you need quality imaging and testing. You can have thyroid issues that cause weight gain but the whole picture needs to be balanced.

45 years - that endo may be old school? Too old school? Because he is wrong. Look at the papers. I know other friends diagnosed bipolar and all due to endocrine - resolved when treated.

I did get an IPSS. I have been suggested to get gamma or other radiation but without a target - my risk of side effects goes way up so I am not willing to do that unless I have zero other options.
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Avatar_f_tn
I've been looking for articles on psychiatric effects of high ACTH after bilateral adrenalectomy. Perhaps you can give me some. Generally I only find things about Cushing's and psychiatric, not Nelson's. The psychiatrist told me to ask the endocrinologist. Psychiatrists generally don't see psople who've had bilateral adrenalectomy. My husband figures that since I have no cortisol of my own anymore that there is nothing for all that ACTH to effect.  He's willing to ask the endo about that next time we go...on or befor 9/15.

My DHEA-S was low (perhaps my adrenal cortisol was low too...it was on sailvary cortisol testing....only normal at midnight, low otherwise)....but they saw a lesion on my first adrenal and when removing that didn't affect the testosterone, the next year I had bilateral oophorectomy....then a year later the second adrenal. Along the way I've had MRIs that looked normal, but as I said above, two to four of my pituitary hormones (FSH and LH for sure, probably TSH and GH as well) dropped to almost zero about ten years befor the adrenalectomies... It took me about 15 years for me to get someone to test me for GH.

The only endo I've seen who is somewhat of a pituitary endo is farly young and wouldn't tet me for GH deficiency when I asked, maybe four years ago

My bipolar has been mostly depression, sometimes quite severe, but the manic (or hypomanic if you want to be dainty) episodes are what my husband is most afraid of. It's a very long story...if you want to know more, email me...OK? And/or, could you put me in contact with someone(s) who have had Nelson's treated and  no longer bipolar?

As for cabergoline, there are several articles showing it can lower and shrink acth secreting pituitary tumors, but for the moment my husband is spooked (as am I) of the possibility of psychosis. I'm surprised you're not considering it...or is the problem that you also have non-zero cortisol levels post BLA?

I'v seen "old school" endo twice....he's the first one to mention Nelson's....and he will check ACTH in 1 1/2 weeks when I have the thyroid blood tests. The second visit he looked all over me for hyperpigmantation (it's subtle...and some of it is dark freckles), so when he didn't see enough of it, when I asked about doing a dynamic MRI, he refused So at the moment it's the best I can do.

Two endos in the UK (email) suggested checking blood ACTH before taking hydrocortisone in the morning and two hours after to compare. I've been on lodotra  for 1 1/2 months, but I think I'll switch back to hydrocortisone acouple of days before the blood test.

It would really help me if you can point me to articles about Nelson's (not Cushing's) and psychiatric symptoms..

Thanks.
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657231_tn?1390151580
I don't know anyone post Nelson's bipolar but I know someone post BLA who was bipolar before and is off the meds now.

There was just a webinar and it spoke of symptoms persisting even after treatment. How depressing is that! I can point you to that.

I have zero cortisol.

It should not have taken so long for the GH testing!

So many of us post-BLA do not thrive - many of us cannot work. A few of us go on very well and some of us do not. It is a hard to predict outcome. My hyperpigmentation is NOT subtle at all. I am tan and my hands look like I am 90. Ugh.
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rumpled...I got your email, but can't reply. The message was from "Noreply"  Please send me your email address.
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657231_tn?1390151580
I have not sent you an email! I try to post as much via the boards. I am pretty busy so private replies take up a lot of time... so that is not me.
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Avatar_f_tn
Have you seen Dr. L in Seattle?

Did anyone ever suggest cabergoline for the high ACTH?
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657231_tn?1390151580
No one ever suggested the med. I responded to you in PM.
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Avatar_f_tn
Cabergoline in the low doses used for prolactinomas has been reported to work (sometimes) for acth secreting tumors. The dose of cabergoline (dostinex) for Parkinson's is 10-100 times higher that for pituitary tumors and can cause heart valve problems. You need an openminded endocrinologist to discuss this with. I'm to see "old school" in two weeks. He agreed to write me a prescription for lodotra, when the previous (young) endo wouldn't. He also was the first one to mention Nelson's disease to me. Several others just sent me for MRIs without saying anything at all about the high ACTH. Did you know that nelson's syndrome has occured more than 20 years after bilateral adrenalectomy? Impressive.
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Avatar_f_tn
It could really help me to see citations about the psychiatric aspects of endocrine disease. Other than Richard Hall, I'm not familiar with anyone discussing it. I've never talked to anyone who was on meds for bipolar who was able to successfully stop them once the endocrine problems were resolved...but then, other than thyroid, few people on psychiatric meds (at least no one I've met) seem to be bipolar.

I'm still curious if you saw Dr. "L" in Seattle and if he was helpful.
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Avatar_f_tn
Did you see my post yesterday (July 22)?
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657231_tn?1390151580
I don't post about doctors in public. I had responded to you in PM before. My friend was not bipolar either - she had endocrine disease. I do think some people have it but docs do not screen effectively for underlying disorders beforehand. It is very complex but now that there is a pill - why test, just chuck a pill at it.
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Avatar_f_tn
Are you going to "chuck a pill" at your high ACTH?

Perhaps cabergoline (dostinex) would work,.. there are several other drugs that have been tried for high ACTH that may or may not work...bromocriptine, cyptaheptadine, somatistatin ...probably the same drugs that have been used for prolactinomas or GH secreting pituitary tumors.. Maybe you can find a doctor who will consider medical treatment instead of surgery or radiation.

By the way, depending on the study, 3-30% of people (generally women) with Cushing's are diagnosed as bipolar. More than 50% are diagnosed as depressed. The psychiatric symptoms can be from the endocrine disease and not present before....and. if present, certainly make for "poor quality of life".
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657231_tn?1390151580
I am trying the dex for now - since I had a prolactoma in the past, I have taken parolodel (bromo). Dex is supposed to suppress the ACTH so going to see how that goes for now.

I don't want radiation.

Yes, a lot of us have issues - and they even persist after treatment. It is sad that the doctors do not look at them but then again, there is no easy way to diagnose so the effort is a lot when appointments are short.
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Avatar_f_tn
Good luck...let us know how it goes.
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