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  • newly diagnosed prolactinoma in need of help

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    Old 05-02-2010, 08:16 PM   #1
    Fendie
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    newly diagnosed prolactinoma in need of help

    Hi everyone about 8 months ago i was told i had a prolactinoma after years of not feeling right and being told there was nothing wrong with me. since then i have been taking Cabergoline 2x weekly and it has shrunk and levels have lowered according to my Endo.

    He believes ive had this since my early teens as im now since beginnine treamtent hitting puberty at the age of 25 ( first facial hairs,body hair....)

    He has also started me on Hydrocortisone 15mg for results i got back from a cortisol test.

    I really dont know what is going on with me as i dont really talk much to my endo only just about the prolactinoma specifically, i think from what i have learned i have secondary hypogonadism,low cortisol, low igf-1 and some other things but i cant be really sure.

    The reason ive came here is that im still seeing the same physical symptoms
    that i have been having before the diagnosis, nothing has changed except i lost a lot of weight.

    -------------------------------------------------------

    Hair doesnt grow back if pulled out at all - i had dermatitis and lost a lot of hair trying to get it under control, it has got a lot better in the last year, maybe due to the prolactinoma being treated, but the hair hasnt grown back.

    Wounds take forver to heal - ive got marks still left from tiny scratches.

    Gynecomastia

    Weak erections - its seems like there isnt enough blood getting to my penis.

    Poor circulation - white spots all over my skin ( bier Spots) caused by poor circulation.

    Will any of this ever improve and can it be linked to the prolactinoma/Low IGF-1/Low Cortisol ?

    Also can the treatments im currently taking be making me deficient in other things ?

    Im sorry about the long read but i needed to get it all out as i feel like im just taking all these drugs and not actually knowing what they do and what to expect.

    thanks for reading and any help anyone can offer

    kevin

     
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    Old 05-06-2010, 10:31 AM   #2
    geno232009
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    Re: newly diagnosed prolactinoma in need of help

    This is the 1st time ive ever responded to a post.Ive been trying to moniter sites about prolactin producing pit tumors as i had a 4 inch one partially removed last nov. I probably cannot answer many of your questions although ive been jerked around by every Dr and pcp ive had.Its like these "professionals im dealing with dont have access to the same info that I do including books and the web.I'm noticing that many health care professionals are just winging it like they're in the stone age with knowing what hormones do what.I never wanted to know why I ticked the way I did,but I assumed for some time that there was something different with me than other people.this is something that any male in his right mind would be terrified of.breast enlargement,low testosterone,cronic fatigue.dandruff from out of this world,weight gain and loss.im6'3"and really dont want to feel emotions like my pituitary,and bromocriptine is making me feel.When I left the hospital in Nov I did'nt think my life was going to be altered in the way it was.I was led to believe that my surgury was a total success.Well not quite the tumor was wrapped all the way around my pit,and appaently 2x the size the doc thought.I guess they cut that sucker in 1/2 and hope that the to part falls well it didnt.Ive got an mri in a week to see if the bromocriptine is working.I can feel its not.in my eyes,headaches and just plain being flat to everything.I am worse off now than before I had the surgury,now I my doc has a stroke and the nurse practicioner they stuck me with puts me on andro gel and takes me off of the only meds that seemed to be helping me function.I cant hold my 1 year old or hug my wife without worrying i'll poison them with the meds Ill have to rub on my shoulders for the rest of my life.If youve got any specific ?s I'll do everything I can to answer correctly for you.If your area is anything like mine you better arm yourself with a lot of info cause these people dont know sh*t.

     
    Old 07-10-2010, 10:16 PM   #3
    Jen1984
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    Re: newly diagnosed prolactinoma in need of help

    Maybe you have a thyroid disorder? Have they ran a thyroid panel on you?

     
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