i thought i had pcos turns out it might be a brain tumour!
don't wanna scare people. just here is an account of my story and im so scared.
im being tested for pcos, no period in over a year after bcp. i had "cyst like" things on the ultrasound and blood tests kinda but no majorly suggestive. but i was convinced thats prob what ive got.... i had regular periods (every 35 days b4) but painful and at 22 years old it seems weird to not have one at all.
however my endo specialist yesterday was unconvinced of pcos... gunna do more bloods again. but is this time testing be for prolactin!!!
prolactin (hormone wen prgnant normal) can be rised in pcos but if abnormally high it can cause milk production (no always.... pregnant women dont until baby born) an no periods. cause is...,... growth on the pituitary gland.
how scary. i hope i dont have this!!!!!!!!!!! anyone else similar>>>
Are they thinking it's Cushing's Disease? (the symptoms mimic PCOS, and it should always be ruled out before settling on a PCOS Dx.)
Quote:
Pituitary Adenomas
Pituitary adenomas cause most cases of Cushing's syndrome. They are benign, or non-cancerous, tumors of the pituitary gland which secrete increased amounts of ACTH. Most patients have a single adenoma. This form of the syndrome, known as "Cushing's disease," affects women five times more frequently than men.
I joined just to respond to your post. I just wanted to tell you not to worry. I have elevated prolactin. It can be caused by an adrenal tumour, but not always. If it IS a tumour, they are most likely begnign and don't grow. The only real problem they cause is the elevated prolactin. I had an MRI and no tumour. My Endo gave me meds for it. Actually, this is what led to him investigating PCOS for me. DON'T WORRY!
i'm going for a ct scan to check for a brain tumour. my dr and i are pretty sure i dont have one since these problems have been going on for 8+ years so if it were a tumour i'd probably be dead by now or really ill. but my excess androgens are not coming from my ovaries, they are coming from my adrenal/pitutary glands. but still its quite an ordeal to go through. he also thinks i may have late onset congenital adrenal hyperplasia (LOCAH). but i have to do more tests first.
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One of my best friends has this, too. I think in her case, she's diagnosed with hyperprolactimia.
For her, she noticed symptoms when she went off BCP. Her AF never restarted on it's own. This was before I knew I had PCOS, and I never had AF either, so I tried to convince her that it was normal (ha, ha!). But she ended up going to the doctor, and he tested her for all types of things, and found extremely elevated prolactin levels. He told her that because the levels were so high, he was certain that she had a tumor on her pituitary gland. So, she had a CAT scan, and fortunately, no tumor.
She sees an endo every so many months for blood tests and prescriptions, and she has to have a CAT scan once a year to make sure that she doesn't have any tumors starting. She takes a drug that is also used to treat infertility...if I heard the name, I could tell you what it is. But, her problem is that she doesn't like the way it makes her feel--it's a time-release that she only takes twice a week, and she feels crappy and doesn't take it.
Her major issues are lactation and stretch marks. And excess weight gain, particularly in the tummy area. The stretch marks are quite bizzare--really, really deep and purple, especially on her upper arms and stomach areas. Her endo told her that she might have issues getting pregnant, but she was able to conceive her son really quickly (unplanned, actually).
I know you are freaking right now--Alicia just stayed at home and cried for the whole weekend after she was told that she might have a brain tumor--but hopefully, your CAT scan will show nothing and you are able to treat it with meds. ((HUGS))!
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i dont think they can kill you and pretty much stay the size they are.. if they do grow can cause visual disturbances and headaches.
but u do need like drugs to control the hormone levels..
I don't know the ability of these tumors to kill you since they start out benign growths, but you do want to keep tabs on it, since they say any foreign distburance in the body like that can cause something to turn malignant. Kevin Aucoin, a makeup artist, died from a pituitary tumor. Not saying that he had the same thing as you (especially since he was a boy!), but you should definitely be proactive and mindful of it, to prevent even the possibility of something like that.
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I am nurse who used to work in neurology/neurosurgery. We dealt with a lot of patients who had pituitary tumors caused by elevated prolactin. The good news is that when treated with the proper medication, these tumors aren't a problem. They are benign in nature and cause headaches and hormonal disturbance.
I have been monitored since my diagnosis of PCOS b/c it is not uncommon for women with PCOS to have these types of tumors.
I do agree Cushings should be ruled out. The best way to rule this out is by doing a 24 urine test for cortisol. It is the best way to measure cortisol and determine if this is Cushings or not.
Good luck to you. I hope everything turns out ok.
__________________ Meds:
2000mg Glumetza each evening-less side effects
150mcg Synthroid-each evening
Phentermine 37.5mg-starting 02/02/08 and taking for 5-6 months
Minocycline (antibiotic) for acne-starting 02/02/08 and taking for 3 months
OrthoNovum 1/150 BCP-starting after AF, taking until June 2008
Verapamil 120mg each evening (for prevention of migraines)
Zomig-for migraines as needed
My doctor thought I might have had a pituitary tumor too because they couldn't figure anything else that was wrong. My estrogen and progesterone levels are very low, and my prolactin was normal but at the high range. I was freaking out, but the MRI went fine and was normal. So try and not think the worse!!! They diagnosed me with hypothalmic amenorrhea (basically a lazy pituitary gland). I didn't have enough female hormones to produce AF, not even after Provera.
heidi.... did u have no periods after bcp? and do the docs give u anythink treatment wise? can u have periods off any form of drugs? even the pill? i used to have a period on the pill...but it was getting ridiculously light.
they say the pill doesnt mess you up... but either way its not natural. i reckon it must play some part. it suppress you own natural oestrogen... and im thinking my ovaries are that used to being that low level... they have stayed like that. there are 0.8% of women who have to wait ages after getting off bcp.
i once waited 4 months. now im still waiting (1 year) are you not having periods at all>? xxx
i thought i had pcos turns out it might be a brain tumour! 
