Addison's plus a pituitary tumor

Hi all,

I was diagnosed with Addison's about 6 years ago and for the first few years I was able to manage it completely. However a couple of years ago I found out (through MRI) that I also had a pituitary tumor. My doctors didn't seem worried at all but lately I've been thinking this might be affecting me more than we originally thought.

So here are my stats:
I'm taking 40 mg corteff, .1mg floreneff daily
Normal Na, K electrolytes,
Normal thyroid, cortisol levels
high testosterone, blood pressure, ACTH (most recent value was around 1000 but I don't remember the units)
My skin looks extremely tan, my cheeks seem a little puffy, I've had some acne (at 23 years old), and I feel like I have been getting more body hair as well.

I feel as though I get brushed off when I see my doctors. Basically they say, well your Na, K, cortisol levels are fine so things seem ok.
Could anyone make sense of these symptoms? Any advice on what I should be doing or thinking? My insurance ***** so I'm hoping to get a some insight before I go pay tons of money to try an out of network doctor.
Thanks so much!

[pacaplace]

Sounds like the tumor is "pressing" on parts of your pituitary galnd and is causing hypersecretion of ACTH which can cause too much release of cortisol from your adrenals and then cause Cushing's (Hyperadrenalism).  That can cause hyperpigmentation (your tan) and "moon-face", etc.  Also, the Acne and hair gorwth my be caused by too much testosterone.  They say that pituitary tumors are generally not cancerous, which is good, but if they grow, they can press on your optic nerve that can cause vision problems.  There are a few ways to shrink the tumors. There's a moderator here called Rumpled that really knows her stuff and hopfully she'll write soon.

[rumpled]

The Cushing's could also be the high replacement dose. 40mg is pretty high unless you have another illness that is using the steroid. So you could have steroid induced Cushing's and the pituitary tumor could be doing something else - which testing has to show and you are not getting much of that. The ACTH could be the tumor, or in response to the addison's. Usually, but not always (as I had the Cushing's tumor) the testosterone would be lowered by cortisol and frankly, if it is that high with a tumor, it points to ectopic, not pituitary! It should only be a couple hundred, so it may really be something else. I had the high testosterone too and had PCOS, endometriosis and stuff like that along with all the pituitary things.

Can you find an in-network GP that will run at least a better run of tests than what you have - like more pituitary tests at least? You need more testing than you have to get a clearer picture - just electrolytes and ACTH is not enough in this case.

[rumpled]

Ok, I read in your profile that you are male - I guess that rules out PCOS etc - but you still may have LH/FSH issues and I wonder what your dhea sulfate is...

They need little male/female thingys!

[geomorph771]

Thanks a lot pacaplace and rumpled for the comments. I guess I can see how my symptoms fits the Cushing's description (though, I also know that it is very difficult to self-diagnose yourself). Maybe it isn't simply the classic Cushing 's, which could be why my symptoms seem relatively mild in comparison to the symptoms description. Or maybe it just is something else completely.
I don't know how much this matters, but I'll add this to my 'stats'; Normal dhea and renin, and I'm pretty sure my high testosterone is just genetic so I probably shouldn't have added that in my first post.
Hmm, what else.
As far as my dosage goes, I was started off at 25 mg, was quickly bumped to 30 mg, and has been increased to what I have today.
I think my next move will to go see the general doctor and have them order some tests (good idea rumpled), and see where that takes me.