My Ct scan showed findings of a left adrenal adenoma however my 24 hr. urine cotisol level was 4.7 range 4.3 - 22.4. so the doctor said I don't need to worry about it because my levels are normal. I have had back surgery 6 years ago and have been getting corticosteroid injections for the last 10 years due to my condition. Could this have caused this ? and could I still have cushings without my urine cortisol levels being high ?
I still think that I have a pituatary problem, due to breast lactation, MRI without contrast showed nothing to explain lactation ? The doctor couldn't.
I had an eye exam and i had less then 50% of my left field vision, and it's my left breast that lactates, even my eye doctor said pituatary tumur.
I am going to my Neuro-Surgen next week for my back, would he be the right kind of doctor to talk to for this ?
Thanks for listening to me again, it seems like it's a never ending story.
Cushings can be caused by cortizone shots. Be careful in how you wean off the steroids---because you have been getting "outside" steroids, it may have caused your adrenals to "go to sleep".
It sounds like you have several things going on---and you're concerned about stuff.
Find a really good neuro-endocrinologist. They're out there---but they're few and far between. You have an unusual problem.
I'm pretty sure the "official" protocol for Pituitary MRI's regarding tumors is with and without contrast. I've had two pituitary MRI's---each was done at a place where they knew what they were doing---and each was done with and without contrast.
Another thing---pituitary tumors are very difficult to see---so you need someone who is specially trained in pituitary tumors to read your images. I've heard of lots of people who had their images read as "clean"---when in fact, they did have tumors.
In addition to seeing a neuro-endo, I would find a neuro-optomologist too. I've had intermittent loss of vision in my right eye over several years. Doctors poo-poohed me until I went to a hospital in Oregon that specializes in pituitary disease---and they did an MRI that showed a tumor.
If you are having pituitary problems and require surgery---you will want someone who does a lot of them. They are out there---but you're going to have to look hard.
Do searches and find folks who've gone through this stuff---they're out there--and they can help you find good doctors.
red64--did you mean Addison's, not Cushing's? Cushing's is hyper-adrenalism, and causes high cortisol, whereas Addison's is hypo-adrenalism, and causes low cortisol. Based on what you said, I would say that more testing into Addison's is definitely warranted. Did the doc that checked your cortisol level know that you have been getting corticosteroid shots for 10 years? If you have another doc blow that off, ask them what taking corticosteroids does to a person's blood or urine cortisol level. They should say that it increases it. If they do, argue that if yours is currently artificially elevated from an outside source and still barely above minimum, wouldn't it stand to reason that you would be below range when off the shots. I did this to a doc once about my estrogen level (taking BCP), and they just never answered. They didn't want to admit that they were wrong the first time that I was ok. Good luck in your search. I know how frustrating and difficult it can be.
High/Low cortisol levels could be caused by:
1. too little thyroid
2. cortisol secreting pituitary adenoma
3. cortisol secreting adrenal adenoma
4. exogenous cortisol----from your cortisol shots...
You've got a kind of complicated picture---but a good doctor can look at symptoms and run the right tests to see what is going on.
I think you've got a pituitary tumor---vision loss is one of the ways that those types of tumors manifest themselves.
And on top of that---if you are lactating---then that's another clue that you have a pit. tumor. A tumor on your adrenal glands wouldn't cause that---or the vision loss.
First of all, just curious how big your adenoma is. I have one that is 7mm, and we look at it about once a year. I have "forumed" with people who have Cushing's that had to repeatedly do 24-hour urines every so many weeks to catch their "high", as they would cycle. But yours is low right now, and I agree having a stimulation test for Addisons would be good also. I don't know how long you need to be without a cortisone injection, though, to make sure the results are accurate. You definitely need to find out.
The other thing is that adrenal adenoma could be a pheochromocytoma. Have they tested your metanephrine levels? They could do that at the same time you do the urine for the cortisol. Keep us posted.
it measured 0.7 x 1 cm no they did not test my metanephrine levels. And the more I thought about it I have been getting steriod injections since I was little. When I had the chicken pox at age 10 I got a bloody nose from have them inside my nose and throat and they couldn't stop the bleeding, so they keep injecting me then. And also when I was sixteen I lost a lemon size patch of hair on the top of my head and they gave me steroid injections in my scalp to help the hair grow back. I have had the injections in my hands, knees, shoulders and back.
So if I understand what everyone is saying is that with all the steriod injections, not to mention the prednazone pills that I have taking over the years with my cortisol levels being that low then something is d*****atly off.
I don't think I really discussed all of the steroid use with my doctor she is new and doesn't know my complete history yet but it is worth a call to let her know. The eye doctor wanted me to do the more intense eye test which she told me I needed to do , so I will and then I will request her to do another MRI with contrast and keep pusuing this.
Thanks for all of your help and advise.
You may have secondary adrenal insufficiency and cushings at the same time. I did. My doctor told me I had too much steroids from Advair, Flonase, and steroid injections which caused cushings (which can cause vision problems). Then, when I it started to leave my system my pituitary gland quite producing ATCH that tells the adrenal glands to produce cortisol. You may be close to an adrenal insufficiency. Also, I am lactating in both breasts. An MRI on my pituitary says I'm okay, but after reading how they can be wrong, I'm not so sure. I am having a MIGB and MRI scan done on my adrenals this week to see if I have a tumor on those.