Personality change pituitary tumour

Posted , 6 users are following.

Hi there, my husband has a pituitary tumour a prolactinoma.  It is the size of a brussel sprout and not responding that well to dostonex as it is growing.

He is having MR scans yearly.  He is not very forthcoming about information but I have noticed a real change in his personality over this past year.  He can become very aggressive and domineering and has done some very out of character things, he is also is quick to apportion blame to others.

I wanted to come with him to see his consultant but he refused to allow me to sit in on this (again being difficult).

Do you think this tumour has any impact on the change in his personality?

At the moment it appears to be gowing downwards so is avoiding any pressure on the optical nerves, but it is getting marginally bigger.

His specialist has ruled out surgery for teh time being and wants him to stay on the same dosage of dostinex.

Anyone help me?  He is 47 years old, maybe he is just having a mid life crisis but his behaviour is very odd.

0 likes, 6 replies

6 Replies

  • Posted

    Oh wow. Yes, it is most likely why your husband is having a personality change. The way I found out I had a prolactinoma was because I became such a different person all of a sudden. Eventually it let me to an endocrinologist and then an MRI where they found the tumor. I doubt it's a mid life crisis, since the tumor can alter your emotions greatly.
  • Posted

    hi Katie

    so sorry to hear this. and it's hard for you also.

    please get in contact wiith the Pituitary Foundation. They have information online and there is a forum. They also have a nurse helpline. they are there to support patients and family/carers of patients. I know someone who found them to be extremely helpful when they wanted to know as a famiy how best to support a patient.

    all the best

  • Posted

    Prolactinoma messes up hormones - it is like he is going through 'change of life'.  His dr should be testing those hormones and prescribing supplementation.  As a consequence, no doubt he is suffering from loss of libido - not a happy place to be for men.

    As dambudzo said, it is important to talk to the Pituitary Foundation, and get all the information you can.  Ask to be sent this info and put it on the coffee table, or somewhere for him to read.  While he has already checked up on the internet, he might be encouraged to talk to the Pituitary Foundation too.

    For females it makes our oestrogen ineffective, sending us into menopause, weakening our  bones, etc.  I suffered this for 6 years before someone thought to send me to an endocrinologist.  Luckily for me, the dostinex worked and provided immediate relief.

    Good luck

     

  • Posted

    Hi Katie,

    I would get a second opinion from a neurosurgeon like Dr. Daniel Kelly from Santa Monica, Calif. Google his name to get his contact #, info, etc. He and his team are experts in this field.

    Good luck!

    Amy

  • Posted

    Hello, my husband was the same and i believe it is due to the medication - cabergoline/dostinex.

    he left me and my children in the end and blamed me and my behaviour.

    Has this ever been mentioned?

  • Posted

    YES, personality and much more

    I began my battle in the late 80s and it was forced to leave a job I loved as things began to

    spiral out of control

    It began with their inability to control my thyroid. . .one time too high, then too low

    I did researching by reading LANCET and JAMA at the university where I got my MBA and it all >>>>>pituitary

    When I presented it, my primary asked me where I had gone to medical school

    I replied "I grew up with the journals at home given my father was in preventive medicine and I hold an MBA

    which I believe qualifies me to read such material"

    Meanwhile, I had moved home from Sacramento and things just got worse

    The medical community overall wrote me off as 'female hysteria' due to my strange and often bizarre

    symptoms I was describing. and some of them were whoppers e.g.

    'roid' rage episodes. . . to this day am totally mortified at my behavior

    I was in a grocery one time with my mother who stared at me horrified as I shrieked at a woman in

    the produce department. As we left she said "YOU NEED to find out what is wrong with you"

    I put on weight even though proper eating and exercising which did terrible things not only cosmetically

    but contributed to emotional turmoil.

    I would go to bed at 10PM exhausted and at midnight it was like somebody violently waking me up

    and I would be wired from then. You can imagine what the days were like. . unreal almost surreal

    until I would fall into bed then that night.

    I kept seeking help from MD community

    Finally I turned to a naturopath who ordered a 24 hour urine

    cortisol test (to see how much cortisol is excreted in that time period)

    He called me with the results and suggested I address it with an endo at a local medical center

    I was dismissed.

    Then my bp sent me to the ER. It was 220/128

    It was at that point that my naturopath told me "Okay YOU need to seek help from the pituitary center"

    It was located at a medical center

    I needed to seek help from the pituitary center at a medical center

    The level was in the 900s. The normal range is 65-200

    They took one look at the documentation and began a long laundry list of testing

    The tumor had centered itself on the pituitary so I had a full resection (2 surgeries)

    I had complications, including CSF leaks and damage to the left side, during the

    surgeries, a massive collapse following the 2nd.. . .ICU/MICU and skilled nursing

    for 6 weeks as they tried to get my electrolytes stabilized and Rehab to

    get me back on my feet

    I am on total replacement for cortisol, vasopressin, thyroid and growth hormone

    NOTHING has been the same.

    These medications literally keep me alive

    (the tumor also affected the optic nerve which they check constantly in addition to

    left with some rather significant balance issues but at least not in a w/c

    thankfully

    I have a dynamic MRI regularly to ensure that it has not regrown

    There is no remission in them

    (Partial resections have 85% regrowth and full resection 50%

    so they do the MRIs)

    He can do whatever but I would seek a 2nd opinion

    Mine grew slowly also but it became harder and harder to cope

    They entered behind the upper lip, through the nose, sinus cavity where they could

    access the brain without a craniotomy

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