I still have some Pituitary results pending which include GH and prolactin and free testosterone levels.
Can you provide your input about my results and if you can come up with list of question i should be asking to Neuro surgeon on Monday i really appreciate it.
I sent my other test results in this forum already , search on my username.
I am confuse for surgery and need your opinion , please tell me risk in non-functioning tumor, can they grow ?
They will say the tests are normal.
Been there, done that.
GH is not the best test for abnormalities - IGF-1 is what is usually tested for growth hormone issues. GH is what the pit puts out but IGF-1 tests how the body breaks it down and uses it so is more valid.
These types of tumors usually are not aggressive growers, but it needs to be monitored - both my imaging and testing as things are going to change.
It may or may not be non-functioning. I had normal tests but had symptoms - so it took a while for testing to catch up.
I just got my prolactin result now , it shows 11 (3-18). keep in mind my prolacin level increase to 11 w/o 28 days of bromocriptine , so i suspect if i don't take bromo my prolactin will go above 18.. Don't you think it is now clear indication of prolactinoma or should i wait and then re-test again or this test is enough to proof it.
Another test result came back is DHEA which is 337 (180-800) , What will be the optimum level for DHEA , i believe it should be above 500 , what do you think ?.
I have UCSF pituitary department appointment on Tuesday , i am wondering if you can come up with some list of questions i should be asking them as it will be hard to get another appointment any time soon.
DHEA or DHEA sulfate? I don't know of an optimum level to be honest as it would vary as it is an androgen producer.
You may get told that your tumor is incidental (as I was) as my prolactin was not greatly increased but it did lower with the meds. Some docs look, oddly, for super high results, to draw conclusions. In the end, it was there and was hormone producing.
I would ask about monitoring (how often to get blood tests), annual MRI, exams, what to do if things change and you feel really bad, visual changes, etc.
Hello. I've been reading your posts for awhile now.. and it has provided me with a lot insight. I was diagnosed with an elevated prolactin level of 97 in 2006. The Dr. sent me out for a MRI and it came back with a "cystic structure enlarging the pituitary gland with question of peripheral rim enhancement measuring appox. 9x11mmon the precontrast images. On postcontrast images measured slightly smaller at 9mm and centered just right of the midline. There is subtle bulging into the supraseller compartment. They don't know if it is congenital cyst of Rathke's Cleft Cyst.
I have been going through hell since. I am almost 100 lbs than my normal size. Can't seem to lose the weight, have migranes (migraines) daily. I'm in the ER for them almost monthly. They have me on dostinex 3/wk, and lavoxyl 50mg daily.
After about 3 years on/off meds it has shrunk to 7mm, but symptons have not. I haven't had a cycle in about 9 months. I'm told I have to stay on meds for life - - which doesn't sit well me because I'd like to have kids really soon and you can't while taking dostinex. Tried Brop. but can't tolerate side effects.
I pretty much insisted they give me the surgery so I'm scheduled on Apr. 7th. Neuro surgery is one of the best but he feels surgery will only make prolactin normal and all my other symptons may not change (headaches, weight gain, etc). I think differently. I didn't feel all depressed, moody, lathergic, have unusual hair growth, weekness in limbs, and lactate prior to all of this.
What are some of you guys thoughts. By the way, they have me on levoxyl but are not even sure my thyroid levels off - - it's just a "just in case" because with a prolactanomia you can get false readings.
You need to be sure that you understand the ramifications. You may not have much function now and don't have anything to lose by doing surgery. It may indeed help.
I had a Rathke's cleft cyst. It caused my Prolactin to go up to almost 200 eek. I opted for surgery and had it in Jan 2006. I had a LOT of similar symptoms. Pre-surgery I had low growth hormone, thyroid, and sex hormones
Cons: I lost all my pituitary function, I had a CSF leak for 2 1/2 years (I may still even have it) and I have constant headaches and am in pain manegement for that. So now I must take all the hormones: Thyroid, cortisol, DDAVP, and Growth Hormone. Also, for a while, I also used transdermal estrogen/progesterone. I am 46 and opted to just go through menopause since I did not want kids.
Pros for me:since the surgery:I've been able to lose 50#, I control my hormones now rather than the cyst. The androgen stuff went away, and my mood is much improved
I would really recommend that you learn the pituitary hormones and understand how important it is to replace each one of them properly Levoxyl is for your thyroid and if your own levels are too low can really make you feel like cr#p. If you are not having cycles now you might not ever have them without hormones.
I agree with horselip - you really need to get your meds in order and learn to take them right, on time, and with consistency. Or you will never feel well.
I had Cushing's and a prolactinoma. I had my tumor "shrink" which BTW, it was not, it was merely spreading all over my pituitary... so while it did not look like it was there, it was!
I am panhypopit - I replace everything but ADH (usually treated with DDAVP), but also had diseased thyroid, gyne, etc - so all that crud was removed too - adrenals gone... I have no option but to replace. I don't have sugar diabetes, but it runs in the family - hoping to avoid it.
Post-op pit people generally lose at least a couple of hormones - growth and thyroid. You need to at least replace thyroid well. I take T4 and T3 to feel at least decent.
How much testing have you had done - have they really diagnosed you and are they treating you effectively - especially knowing that you want kids? They tried to preserve that in me but I was a lost cause. I have no kids - had hyst and replace hormones.
I have been able to lose around 75lbs in 4 years (Cushings is a b*tch), but I was sick a long time and still am. Hormones are an art - and it sounds like your doc may be painting with a dime store brush... Thought about a decent doc - is yours a neuro -endo? Treats pituitary patients all the time?
If you do the surgery - you need to be dedicated to the pills, patches, shots, gels, etc - this is a lot...but I have no regrets - I feel so much better!
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