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Avatar universal

Rapid deterioration in mental health after pituitary op

At the beginning of May my partner was operated on to remove a pituitary tumour that was causing severe headaches, distorting his optic nerve and threatening his vision.  The op was performed via his nose.  We were warned of the risks of the op itself but not told to expect any after-problems.  At first all seemed well but then i began noticing strange things.  He would forget simple things, think he had done something but not done so, began to prophecy dangers and risks attached to simple events.  Then he was no longer getting out bed unless told to, did not know what he was doing and was utterly confused about everything. The deterioration got worse each day and his mental health is such that he has very little hold on reality.   I am distraught.  Only a few months ago he was holding down a responsible managerial position and now he has to be told when to change his clothes.  When I spoke to my GP and the consultant of my concerns no-one seemed worried and I felt that no-one understood the seriousness of the situation.  So I made a fuss at the hospital where the op was perfomed and he was admitted yesterday and is undergoing an assessment.  An MRI scan shows no abnormality.  Has anyone had any experience of such a drastic change in mental health following this an op.  If so, what caused it and how has it progressed?
20 Responses
144586 tn?1284669764
Yes, damage to the pituitary often causes dramatic personality degradation.

Scientific American did an article on the subject.

One of the most famous cases involved one of the members of the group "The Beachboys".

The pituitary controls hormone production, and hormones control mood, ambition and many other aspects of a normal existence.
657231 tn?1453836403
COMMUNITY LEADER
Is your partner on adequate replacement hormones?

While surgical recovery is usually a few weeks and the docs are accurate about that - but the hormonal recovery can take months to years to... well, I am permanently disabled for my hormones.

A MRI is not going to show the issue - labs are what are needed. A neuro-endo. Neuro-opthomologist. Testing blood, urine, saliva. Have to test for the rest of your life.

At a minimum, thyroid is necessary after pit surgery - the thyroid will not function afterward well as the pit will not signal the thyroid. Growth hormone and other hormones may go as well. I am payhypopit and replace all but one.

Get a proper doctor.
596605 tn?1369950227
Wow-
I am so sorry to hear about this. This is not the norm. I've never heard of such a dramatic personality change and I've been pretty involved in the pituitary community for about five years. I've heard of smaller type changes from thyroid deficiency. Theoretically though if your thyroid totoally tanked you could have mental health affects frin this. Also dopamine problems are common. Dopamine inhibitory hormone is made by the hypothalamus and gets sent to the pituitary gland to keep prolactin levels in check. It is also a neurotransmitter. A pill form of this is given to folks who have high prolactin levels. I was one that could not tolerate the medication as it made me crazy.

Was the tumor large and pressing on the pituitary stalk or hypothalamus? I ask because there are many neurotransmitters that are made in this area. If it were damaged from the tumor or surgery then maybe something like this is going on. Has he had a psych evaluation? It sounds like this would be very important. I also wonder if the csf pressure is good? Does he have a headache that improves when he lies down? Does he have a fever? Does he have discharge from his nose?

I feel for you. These cognitive changes seem very extreme and more urgent than how your doctors are viewing them.
Horselip
Avatar universal
Thanks for all the replies; much appreciated.  Well, I have been told that there is no damage indicated by the MRI scan, there are no problems with hormone levels (he is on 10 mg of hydrocortisone twice a day).  So the doctors are sending him to a psychiatric unit where he can be assessed and his symptoms treated.  Feels to me like the doctors are washing their hands of him because they cannot find the link between the surgery and the problem and do not know what has caused it.  However they assure me that they have not washed their hands of him and he will be regularly assessed at the endocrine clinics.  In the meantime my poor man is going to be locked up and dosed with drugs and our life has gone to the dogs.  This is like a nightmare from which I cannot wake up.
2 Comments
Interesting discussion, my surgery was a bit of a botched up job (didn't get back home for 8 months), and sadly research here in the UK was insufficient although it is improving now. I never recovered fully from my surgery and am still chronically ill 30 years later. But it often does affect moods, think it has to do with lack of natural hormones and adrenaline and pituitary function.
Apologies, my memory is so bad I'd forgotten I'd previously commented on this site - so sorry
765439 tn?1292964014
im so sorry...this stuff pisses me off!
657231 tn?1453836403
COMMUNITY LEADER
I guess they have never read established papers about the relationship of the pituitary and emotional issues. Locking him up is not going to work - he needs to be treated by a neuro-endo as symptomatic treatment rarely works as the body is working against the medications.

He needs to see a neuro-endo and get on replacement hormones.
596605 tn?1369950227
It is hard per you saying that your life has gone to the dogs. Mental health facilities are not like One flew over the Cuckoos Nest. This is a misconception. How is your partner doing?

This may be very good thing to happen. He will get a full mental health check up and hopefully the doctors will figure out what the heck is going on.

As long as an endocrinologist is involved with his hormonal health they will get to the bottom of this he will be released and there may be a new pill or two that he might have to take.

Being a pituitary patient does not mean that we cannot get other illnesses.

Hang in there! Sending you a virtual hug.
Horselip
Avatar universal
Thank you Horselip - and thanks to rumpled and others.  Howard is now in the secure unit and is on anti-depressants.  He has got so much worse.  He wants to die and is now refusing food and drink.  He is a wreck and a bare shadow of his former self.  I am now scouring the internet looking for help, looking for that one health professional who will know what to do and how to pull Howard back from the edge.  I have contacted a neuro-endocrine centre in Massachusetts as well as searching for ones here in Britain.  We will do anything to save him regardless of what it takes or how much it costs.
I am still having difficulty coming to terms with the fact that I was not told, that I had no idea that personality problems were common after pituitary surgery when obviously they are very common.
Eileen
596605 tn?1369950227
Eileen
I am so sorry that he is worse. It sounds like your Robert has a depression coming from a very dark place. But at least he is safe from himself, at the moment.

You might check with the Pituitary Foundation in the UK for doctor info. They are in Bristol and should be easy to find on the internet.St. Barts in London has some excellent neuro-endos.  I just don't know how long you would have to wait. I've heard that things take forever under the NHS.Maybe things get sped up if there is urgency like with your Robert.

I've never heard of such a major personality problem happening after Pituitary surgery. But yes, hormones are very connected neurotransmitters thus to mental health. Are you able to get copies of his last few lab reports for his hormones and post them?

Private message me if you'd like more help with locating the Pituitary Foundation or whatevers.
Horselip
657231 tn?1453836403
COMMUNITY LEADER
Besides the anti-depressants, is he on replacement hormones? Not being on proper replacements not only can impact the personality, but may be life-threatening. He really needs to be under the care of a neuro-endocrinologist. Just the anti-depressants alone is not sufficent - he needs thyroid - which if they have done tests they have seen the TSH is very low so they may think he is over-medicated but after pituitary surgery, the TSH reading is NO LONGER VALID so they must use free T3 and Free T4 to see what the thyroid is actually doing. If the doctors are not skilled in post-op pituitary, they may not know how to treat him. He may need cortisol, GH, thyroid, etc.

Avatar universal
The doctors at the Cardiff Hospital say that he must take Hydrocortisone twice daily, which he is doing.  They say only testosterone is rather low at the moment but this would not impact on his mental state and that will be sorted later when his mental health is better.  They say he doesn't need any other hormones at present.  He is due at the endo clinic at the end of september but i am ringing the hospital tomorrow to get that brought forward a little because I think it is too long to wait and he needs a check sooner than that.  I am also going to speak with the psychiatrist who is dealing with him in the day or so, to find out what is the prognosis.  Apparently he has seen two other cases like this previously.
596605 tn?1369950227
Hey again-
Testosterone being low is a sign that his other hormones are probably low too. And yes low testosterone can cause depression the doctors don't know what they are talking about. Low everything will cause him to feel simply awful and be life threatening. Like Rumpled said his hormones have to be looked at and corrected. September is too long. His case is urgent.
657231 tn?1453836403
COMMUNITY LEADER
I agree with Horsey... It sounds like his LH and FSH may be impaired - or even low T can be caused by too much cortef which can cause rages and emotional problems - so the meds can be causing problems too. How much cortef and at the wrong times can be an issue (if they are doing the hospital 9am, 9pm, he is not getting dosed at the correct times for a body, cortef at night means sleep interference). 20mg cortef divided by 15-5 is normal, any higher can impact mood, some need more, some need less.
Avatar universal
I am new to this pituitary community.  I just stumbled across it yesterday and have been reading all the posts.
I pray to God that all of you get the help you need so badly.  Pit tumors are new to me, in that my brother Bill recently had a large tumor removed from his pit gland.  Before this, I had never heard of this problem.  He has been home 4 days and is taking 2 hormones so far.  He is still having the headaches and lots of swelling.  One eye is still swelled shut and he cannot move it at all, even tho he can see out of it when he lifts the lid.  He is afraid it will stay that way.
I am trying to find more info on this particular problem because I see depression on the way.  I don't want that to happen since I am fighting depression myself over my husband going into a nursing home.
There seems to be so many different problems that can crop up from this type of surgery.  Doctors don't tell you squat about any possible touble or side effects until it happens, fearing you won't have the surgery.  Of course, you have no sensible choice but to have it, after the MRI reveals the scary facts.
I hope someone may have a hopeful answer t the eye swelling or maybe some things we could try.
God bless all of you for trying to help each other and caring enough to spend your time doing so.  It always comes back to you in some way.
Louisville Gal
657231 tn?1453836403
COMMUNITY LEADER
What kind of tumor was removed and what size? Ptosis (the eye droop) is not normal so I hope that is swelling - but even the swelling is not normal - most people I see after surgery look like nothing much as happened - just look tired and a nostril may be larger.

The doc should have told you more ahead of time - most do - which means your doc might not have the experience.

Is your bro under the care of a neuro-endo as well as a surgeon?
Avatar universal
I know I'm years too late to reply, but only just seen your comments.
I had a prolactinoma many years ago, they messed up the surgery and had to graft three times and then so badly overdosed me on steroids I ended up bedridden for years with all the side effects and diseases from these tablets.  Now they've re-written the text books and this is a main problem. They treat the text books as if it is perfect truth. But we are humans who don't fit into perfect truth, each one of us will have experienced something different, from symptoms to recovery.
Please keep away from shrinks if possible. I was constantly misdiagnosed with a psychological cause from what turned out to be prolapsed discs, hernia, etc etc and even more recently I was offered anti depressants when I wasn't depressed, for what turned out to be M.E. asthma and severe vitamin d deficiency. Sadly they don't have a clue.
657231 tn?1453836403
COMMUNITY LEADER
Very true! Hope you are better now!
Avatar universal
Why doesn't anyone post where they got help at. Name a good place where they got treatment and name the places that did not help I am currently looking for a place to help me with my pituitary "cyst" /tumor I'm willing to travel anywhere. I'm currently looking at university of virginia. The mayo in Rochester mn.and md Anderson in Huston tx. I also called st Johns in California. Anyone have any input on any of these??? I'm currently in SC and hospitals and doctors here don't have a clue they just keep putting me on more meds even though they say they can't find anything wrong with me except the cyst on pituitary that they say is to small to cause anything they also can't explain why I have a high white blood cell count in spinal fluid and get massive headache and vomiting. Please post were you people got help at.
15039796 tn?1438057003
Hello,

I had a pit tumor 12 years ago that was removed and should not have been because the surgery is entirely too invasive. They have actually rewritten the text books to suggest medication first and surgery as a last resort,  but it's obvious that it's not catching on to existing docs or they are just cashing in on the surgeries (im sorry to say this happens).

It took me a really long time to know who to talk to and untangle this web. I am dedicated to helping who ever, how ever i can and associate you with the right providers. Please email me at ***@**** if you want to set up time to chat.  I don't have all the answers, but I have the questions you should be asking before you even step in the office.  I am so sorry you are all going through this, i know what its like reading these blogs in complete fear that you will never feel normal again.  It can happen, just be patient and keep at it.  Best, karly
Avatar universal
My father had a pituitary adenoma removed about a year and a half ago and we have noticed personality changes as well.  He also seems to be a little paranoid and cannot be reasoned with even when several different family members try to explain what he believes to be true is not.  He has become more easily agitated and makes up stories that never happened.  Going to see if his PCP can refer him to a neuroendocrinologist, thanks to the feedback on this site!
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