Can someone tell me more on the extreme effects of excess cortisol and pituitary gland malfunction?
I am supposed to have the following tests done
1) Morning Cortisol
2)ACTH
3)Comprehensive metabolic panel
I just came from my doctor and she said that now that we have confirmed that I have excess cortisol we need to know where it is coming from. I thought the last test I did would determine the source, but I was mistaken. She explained to me that if it is a pituitary disorder then I would have to have an image scan at a center and if it has to do with my adrenals then I will also have a stomach scan.
She handed me a copy of a requisition for my cortisol testing. It says the following:
CORTISOL, TOTAL, SERUM 14.7 ug/dl
REFERENCE RANGE
8:00-10:00 AM 4.0-22.0
4:00-6:00 PM 3.0-17.0
DHEA SULFATE 64 45-320 mcg/dl
TOT. TESTOSTERONE 89
FREE TESTOSTERONE 4.0 (1-8.5)
24 HR URINE CORTISOL 191 mcg/24 (5.0-50) <----That is very high!
I'm afraid of this being pituitary. She sounded serious about the situation. What are my options if it happens to be pituitary? Is there any regulation for that?
As far as symptoms, I have a lot of fatigue, sleepiness, heart palpitations, acne/hair loss. I know the Aldectone will probably not treat the underlying issue, but at least I would feel better if I could get on the Aldectone to block my symptoms. She told me that she can't medicate me until they find the source, but didn't really tell me why. She originally had intended getting me on the Aldectone and inclusively told me that it is a very safe medication. I don't know why doesn't she just treat me with it now in the meantime. Anyone know?
Perhaps being on the Aldactone would make it harder to find the source of the problem. Alternatively, maybe it's because Aldactone does affect the adrenal glands (which are the glands that produce cortisol, as I'm sure you're well aware at this point!). I know it lowers aldosterone, which is one of the hormones the adrenals produce, and perhaps there are other effects as well.
Oh, and if it is a pituitary tumor, "Treatments for pituitary tumors include surgical removal of the tumor; radiation therapy, using high-doses of x-rays to kill tumor cells; and/or drug therapy, using certain medications to block the pituitary gland from producing too many hormones. The most common treatment is surgery." That may not be too reassuring, but at least even if it is a pituitary tumor (rather than an adrenal problem or a problem other than a tumor) there are treatments.
I think the ACTH level should tell you whether your pituitary is signaling your adrenals to secrete too much cortisol (via ACTH), or whether your adrenals are secreting too much cortisol for another reason (such as maybe an adrenal tumor).
Good luck with finding the source of the problem, and getting it treated! I'm sure you'll feel a lot better then.
Thanks zorah, my other question is whether it is pituitary or adrenal, does secretion have to be as a cause of a tumor? If not, then what are the treatments for non-tumorous pituitary secretion OR non-tumorous adrenal secretion? Thanks again.
Have you been evaluated for Cushings? I am not sure exactly what all the criteria are but I know that some overlap with PCOS and there is something to do with cortisol. A friend of mine has cushings and I know it is related to the cortisol but I don't know any more.
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Thanks zorah, my other question is whether it is pituitary or adrenal, does secretion have to be as a cause of a tumor? If not, then what are the treatments for non-tumorous pituitary secretion OR non-tumorous adrenal secretion? Thanks again.
I believe very high levels of cortisol are usually caused by a tumor/hyperplasia, either in the pituitary gland, the adrenal gland, or in another organ (such as the lung). Having a tumor outside the pituitary or adrenals that secretes ACTH is called ectopic Cushing's syndrome. These tumors are usually benign. Sorry, I really don't know anything about causes besides tumors/hyperplasia.
I suppose surgery or radiation may also be used to treat cortisol hypersecretion that occurs without hyperplasia, I really don't know. I would guess they would most likely use one of the medications that suppresses cortisol secretion, which include mitotane, ketoconazole, aminoglutethimide, and metyrapone.
(I hope I'm not telling you anything wrong or misleading, but I'm not an endocrinologist, just someone who reads a lot. I apologize if I'm misleading you in any way!)
Okay, so what if I don't have a tumor? What's one step below Cushing's or pituitary adenoma's? I've heard of pseudo-Cushing's syndrome which causes the same effects of Cushing's without the condition. I am just praying to God that my cortisol levels arent' going down because of simple stress. I pray I pray I pray...How would they treat an overactive cortisol condition if my cortisol won't go down due to stress? What are the medicine names available?
Okay, so what if I don't have a tumor? What's one step below Cushing's or pituitary adenoma's? I've heard of pseudo-Cushing's syndrome which causes the same effects of Cushing's without the condition. I am just praying to God that my cortisol levels arent' going down because of simple stress. I pray I pray I pray...How would they treat an overactive cortisol condition if my cortisol won't go down due to stress? What are the medicine names available?
Medications that suppress cortisol secretion include mitotane (Lysodren), ketoconazole (Nizoral), aminoglutethimide (Cytadren), and metyrapone (Metopirone).
I think I've made it very obvious of why my condition has progressed to the point it has. I'm here on this forum reading stuff like in that Cushing's website, arent' I?
I guess my whole dillemma in this situation are 3 things:
1) Not really understanding what this is and what is happening to me.
2) Not knowing how long these tests are going to take so that I can finally get treatment.
And
3) Thinking that with a high level, I've already developed a condition with a medical name on it and it is not just stress anymore. I think I read somewhere that once you have a 50-100 it is considered Cushing's syndrome in your 24 hr urine cortisol. Mines at 191.
My whole family broke down crying when I told them what I was being tested for. My mother started crying and although I tried to explain to her that the doc is just merely disqualifying possiblities here, her crying made my voice crack so I cried. Then my little sister saw us crying and started her own waterworks too. It was a pool of water...
You know, being new to this whole thing, you don't know what your dealing with. Although I'm not too sure, but I think a lot of people probably have Cushing's and lead perfectly normal lives under medication. Eventhough you stated it is curable. You just focus on the horror stories mostly. In that Cushing's website, I kept reading of people who have had their tumors removed with no success for their symptoms, for example. Then about the people who were beign offered a rememberance for their passing...the whole gamut! Lol!
Thanks for helping, but if you guys don't mind, I'm gonna stay away from the internet for a while. My next appointment is this Thursday. I'll finally learn wether my ACTH is high along with my cortisol. This is when it'll get scary because if it turns up high, I don't know if that really means a tumor or not. Even if it is not, I'm still going to get sent for more testing at a different center, this time neurological. This is going to hinder treatment even more. The reason it makes me mad is because somewhere deep down something keeps telling me that all I have is simple stress and all this testing is unnecessary. But I really do understand that they have to be done.
So she said the problem is adrenal and that with my levels she didn't believe it possible that it can still be from stress. She said that with an abdominal MRI the likelihood is that it will reveal a tumor. Yet, she said this isn't Cushing's. She said it is different. She gave me some explanation but I didn't understand this. Can someone explain this to me?
So my option is either surgery or medication. I have heard that with medication it is harder because it isnt' too effective?? Can someone correct me? I really have never been opened before and I don't want to be opened. I would really prefer medication, but it'll probably take longer to work. I can't afford any more hair shedding.
jlucy, how are you treating this and what are your symptoms?
About excess cortisol and the pituitary gland 
