sluggish pituitary, from pred tapers?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/7/2008 12:24 AM (GMT -7)   
Hi,
I recently had another low ACTH and its been consistently low for over a year now and another ACTH stim test that showed that my pituitary is not producing enough ACTH to stimulate my adrenals to work. This is called secondary adrenal deficiency.
 
Of course, my male endos that think, despite my pigment problems, that my endo problems are insignificant--and they aren't (on the stim test, and abnormal response is a doubling, and my septupled--quite abnormal).
 
Anyway, of course the second thing, when confronted is to blame it on pred tapers, though I haven't had one since January. Has anyone else had problems with a sluggish pituitary?
 
This is a serious problem because the adrenals will shrivel up and not work anymore, and I have some physical signs that that may have occurred in the past.  It also means that I might not actually be as hypothyroid or maybe more hypothyroid than suspected, they are supposed to treat the pituitary first.
 
So any ideas and experiences with this problem would be appreciated. I'd like to know what treatment you take, if you have the problem. I may have to get my family doc to treat it, because I don't have a good endo. 
 
I now know why I'm falling asleep all the time (i asked the endo if it could possibly be due to my endocrine system and she said no, which shows how lousy she is, and she doesn't do any of my labs fasting, though she is supposed to. She is very nice, just not very good. I think really she is afraid to treat me because of the AI disease. I hope that's what it is, otherwise she's really incompetent.
 
I'm trying to find a better doc and will probably end up at an alternative medicine place.
 
Well, thanks for any help you can give and I hope this post finds everyone doing okay.
 
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 6/10/2008 9:00 PM (GMT -7)   
So sorry you didn't get any kind of response to this sooner. I read up on adrenals very carefully before being diagnosed with lupus. The major fatigue that is often one of our first symptoms can be blamed on problems with the adrenal glands.

From what I found out and all my doctors I asked, the adrenals seem to be somewhat untestable and not very connected to thyroid issues...thyroids seem to have their own set of diagnostic tests.

When we take prednisone, we are taking over part of the work of the adrenal glands - normally they produce a natural substance that equals about 7 mg of prednisone daily. That is why it is so important to taper when coming off of prednisone -- we must do it gently to allow the adrenals a chance to take over again. Many people with lupus never are able to get below 5-7 mg of prednisone -- but it seems (as far as I can find out) impossible to tell if the adrenals failed before prednisone or after.

I've never been able to find information on how/if the pituitary might be involved -- it'd be great if you'd keep posting to this topic as you find out more information.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 6/11/2008 2:51 AM (GMT -7)   
Hi Lynnwood--
What I found was kind of disheartening as far as diagnosis goes. One of the tests they use to test adrenals is a cortrosyn (ACTH) stimulus test. ACTH-adrenocorticotropic Hormone is released by the pituitary to stimulate the adrenals which then release cortisol.

There are two types of adrenal insufficiency, one called primary which is Addison's disease--where your immune system attacks the the adrenal glands. Symptoms are muscosal hyperpigmentation, weight loss, and fatigue.

The second kind is secondary adrenal insufficiency, where the pituitary doesn't produce enough ACTH to stimulate the adrenals. If left untreated, the adrenals shrivel up and die, so it is important to treat.

Generally, people with primary adrenal insufficiency may have normal or high ACTH before the stim test, and the stim test will raise cortisol very little in the base value, after 30 min or after 60 mins, and the highest cortisol level will be below the normal range for cortisol.

In secondary insufficiency, the ACTH may be normal but usually low before the stim test. When they give you the cortrosyn to stimulate the adrenals, your base cortisol may be low, then at thirty and sixty minutes it will double, triple, quadruple, or even be 6 or 7 x higher than the base cortisol. This happens because the adrenals are starved for ACTH (cortrosyn) and go nuts when given cortrosyn. Generally the final cortisol level is at or above 28. This is the type of adrenal insufficiency I've been told is the one that can be caused by prednisone--since predisone effects the pituitary.

Apparently secondary adrenal insufficiency is drastically underdiagnosed and most endos and other doctors do not know how to properly diagnose it. It typically is not diagnosed until the adrenals are permanently damaged and secondary adrenal insufficiency has become primary insufficiency.

Its easy to understand why secondary adrenal insufficiency is not diagnosed since most WebMD, some test guidelines, and other physician resources give only information to diagnose primary insufficiency--stating that a ending cortisol of 28 or better indicates normal adrenal function. That may be true, but a closer look at the test results may clearly show problems with the pituitary and secondary adrenal insufficiency.

I have the actual physical signs of adrenal disease and symptoms and have been to four endos now and cannot get a proper diagnosis according to articles on secondary adrenal insufficiency. Since my polyendocrine disorder typically ends in Addison's disease and possible death, it is very upsetting.

Anyone with tiny black spots under the tongue that look like pencil dots, black spots on the arms--black not dark brown but more bluish black--or hyperpigmentation on the mucous membranes in other parts of the body should get properly checked for adrenal disease, though you may have it without these symptoms, because most deaths occurring from adrenal disease occur because doctors fail to diagnose and treat the condition early enough.

My source for this is Wikipedia--which in this case is well documented and includes several well researched documents. Hopefully you all have better luck with endos than I do.

Take care and thanks for asking. My ACTH was low, my stim test was base 4.7 (low), 27.1 (30 min.), 28.7 (60 min.)--clearly secondary adrenal insufficiency--actually almost 7 fold increase and characteristic low ACTH before stimulation. I have been like this for at least two years if not more.

If you feel tired or fall asleep alot where you have trouble waking up, fall asleep when you don't want to, you may ask for this test.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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