NIH - try getting into a clinical trial.
Ah yes... you see, a competent neuro-endocrinologist will understand the emotional effects of the pituitary tumor, but your doctors are ignoring everything.
I went to the same place and was told to ignore my tumor as well and was told none of my symptoms were attributable to my tumor either. I know others were told the same. I wonder if that is their party line.
When that many medications do not work, it is time to look for the source of the issue - and find a different doctor or set of doctors. There are pituitary centers - why not go to one?
Money...if I had it I would go for sure. I've tried getting financial help and everything. Because of my problems I haven't gotten to work much or make money. Right now I take care of my handi-capped sister and only make $260.00 per month doing it as the other money goes to child-support, medical bills and doctor bills. rumpled...do you happen to know of any place that does some type of charity care program or something. The Mayo clinic hospital bill was all paid for, I just had to pay to get there and pay to stay in a motel.
I am getting worse by the day and don't know what to do.
Hi. Just thought you might be interested to hear that apathy was really the very first symptom my son exhibited with his pituitary tumor, though of course we didn't recognize at the time that anything was seriously wrong.
He was always a very "typical" little boy - loud, extremely active, very verbal, and curious about everything. When he turned 7, he began to change; less active, more withdrawn. I thought it was school stress causing the change, but it got to the point that he really had no interest in anything. He could still enjoy building Lego creations and origami, but after finishing a project, he couldn't have cared less about it, which was very unlike him. Even a fantastic array of Christmas presents didn't interest him (he has a very generous uncle). He became very depressed about homework, so I still thought it was just school issues.
When he first started showing physical symptoms of illness (abdominal pain, headaches, eating and food issues, and above all extreme light sensitivity) I took him to a GP, an opthalmologist, an allergist and a neurologist. They all suggested he should be seen by a psychiatrist! None of them thought anything was so terribly wrong, except that the neurologist thought he must be autistic! (The GP later apologized for his misdiagnosis, the neurologist did not).
It does make one wonder how many people are walking around with an undiagnosed pituitary disease, who are on anti-depressants because they were told, "it's just stress, you have an anxiety disorder, there's nothing physically wrong with you".
I hope that more doctors now are thinking of hormone dysfunction as a cause of anxiety and apathy. If only they would refer their patients to endocrinologists first, instead of psychiatrists, so many more people would get the early care they really need. Neurosurgeons say, on average , most patients go 2 years before they get the correct diagnosis, but I have talked to many that went 5 years and longer.
I can not help much with experience. I too was at Mayo 2 years ago and again last year with a 3x4mm pit tumor on the right side which they said was not causing me any symptoms. I was sent to 2 different psychiatrist at Mayo and they both ruled that I did not have depression but that maybe some talk therapy could help. I have started to see an internist in my home town now and I have been having headaches daily. They thought it was from my high blood pressure I am scheduled for an mri on the 11th to rule out (I think) that the tumor is not growing. I saw a my old eye dr who was the one that did encourage me to have an mri done 2 yrs ago and the results last week was that I have cataracts now (I'm 49) and he has scheduled me for my peripheral test on friday.
Some of your symptoms are so similar to mine and I just want you to know that your not alone in this and don't give up. Keep doing your research and stay positive.
How or where do you go to try and get into a try at the NIH?
There is a website for clinical trials for NIH.
My understanding is that cataracts typically develop from too much exposure to the sun & it is true that high blood pressure is thought to be a source of headaches. But I can't help but wonder if even small tumors might not cause some kind of pain- like a small pebble that doesn't belong in one's shoe.
In Dec. 2012 my husband was diagnosed with a pituitary microadenoma to which they started treating with cabergoline, which has caused such severe side effects that he had to stop taking it. He was fired from his job after many years of service there because of lack of control of his emotions. He has been thrown into a world of instability and many questions. He has no motivation, is irritable and at times hard to live with. He is not the man I married and have known for over 41 years. He is very depressed and complains of a constant headache and lethargy and loss of peripheral vision and inability to focus at times. He has stopped riding his bike because he feels unstable while riding. He tried many antidepressants and they all caused severe side effects and did not help his depression. The endocrinologist he first saw did not seem to think these symptoms should be of much significance. We are changing doctors hoping for someone who will be able to answer some of these concerns. This is certainly turning our lives upside down.
I do hope that you find a neuro-endo at a pituitary center to help your husband. If your current endo is one, find another.
The pituitary tumor and the hormones have to be balanced to get the emotional health under control. I assume he has a prolactinoma given the treatment and having had one of them (had both a prolactinonoma and Cushing's) I know it made me crazy and I could know it, but not control it.
If he has lost vision, then he must be on medication - he can try parlodel and see if he does better on that - or he has to have surgery. It cannot be left as is.
His doctor is not skilled at all if the symptoms are not tied back to the tumor - but that is sadly common. He needs treatment for the tumor. Check out the health pages and get more information.
I have searched for & found this site because my husband had a pit. tumor 8 yrs. ago (surgery + radiation). Because he takes very good care of himself and has no underlying conditions, his recovery has been excellent; his NS considers him his "star patient".
BUT, slowly over the years, and now quickly, I see major cognitive deficits. Not memory as much as auditory processing (he claims he can't understand my "accent"--after 15 yrs. of marriage?!), and lack of some logical reasoning (not finding a product in a store, then going back to the SAME store).
I am very frustrated because all the docs say he is "fine"; after all, the tests show it! They were very dismissive of me; what do I know, I am only the spouse. He is only 60 but acts like he is 80. He is apathetic & reclusive. Do I really have to accept this decline?!!
Oh, he had broken both bones in 1 leg last fall--which took twice as long to heal--and he refused to have a 5 min. bone density test, until 4 months later at "a regularly scheduled dr.appointment". (Just that stubbornness alone is unlike him.) Apparently low bone density could also occur with no pituitary gland, something else we were not fore-warned about. Either these docs don't know any better, or have deliberately withheld information from us.
Any advice would be greatly appreciated, thanks!
If your hubs had radiation - his pituitary could be slowing dying. If he is not on replacements, his hormones could be seriously off - and that could account for the *off* parts of his personality - as well as his bones, healing etc.
His testing - are they doing the tests at 8am, fasting? Are they doing full panels - what exactly are they testing? I can look wonderful on some panels but I am far from fine - I am panhypopit! Is the doc testing growth hormone - all the thyroids as the doc would expect TSH to be low post op but what about the Free forms?
You don't have to accept this decline - you do have to get copies and ask questions about exactly what his levels are.
I am on growth hormone to raise my bone levels - plus my muscles decline too - it could be cortisol or any number of hormones, even testosterone that is off. When was his last MRI? What was his tumor type?
Thank you for your prompt reply (and very sorry for your numerous health problems).
My DH has no pituitary gland--the NS said "it looked like balsa wood". He is on 4 hormones, but not growth hormone (which he declined due to cost). He takes his hormones & makes all his appointments faithfully. He never complains and is able to work as a computer programmer.
The most recent MRI was December. He had neurocog. testing in Jan., which showed some deficits--which they werent concerned about. the most recent blood panel was last month. He sneaked off to the endocrinologist w/o me, because he knew I would tell her my observations/opinions. To her credit, she was very concerned about the broken bones.
I will have to look up his information; he seemed to be in good hands, and we were told that he would be fine. "Fine" is not exactly *healthy*.
(as an aside, I have been disabled myself for 16 years, until I received an accurate Dx a yr. ago & had brain surgery last summer. I found this site from being a member of the Chiari Malformation community. so we both have injured brains!).
Sorry for both your injured brains.
Re growth hormone - there are some brands that will offer plans that pay for a lot of it so if you qualify, they give you a lot for free. It really really makes a difference. My bones improved a LOT after I got back on it - I had to go off after my hyst messed up my levels. My doc participates in a lot of studies and there are bridge programs and things - so prices are dropping. My insurance has me on a cheaper on and it is a battle (like currently I can only get a 20!!! day supply so my co-pays bite but the difference off vs on... I have to do it).
He has zero gland? So he must be panhypopit like me... I don't trust *fine* - those words send shivers down my spine. Too much cortisol replacement at the wrong time can eat up his bones - is he on a short acting replacement like cortef/hydrocortisone or long acting like pred or dex?
I am disabled from my pit tumor - it is a rough road... and my hubster can note things about me that I don't pick up as I tend to get more confused as my hormones get off. It is important that he has a good neuro-endo, but even mine who is good, you have to be very pro-active at putting things in front of him as you only have so much time in this time of 2 minute appts.
I've been meaning to get back to you.
I spoke with my DH's endocrinologist last week, and she told me that he is not on her recommended dosages! She said that she didn't think it could affect his personality, but she didn't dismiss it either (unlike the other drs.). She said that she would love for me to come in with him, as he has been stubborn (lol, am familiar with that).
I'm sorry that you are disabled from this condition; being disabled is tough for so many reasons. thank you for your input on this forum.
It can effect personality - plus when you are not feeling well, a person is not at one's best anyway.
I hope you can convince him to see the doc with you and that you are being supportive - I know so many spouses that don't really care at all and don't even bother to learn or understand. I think - IMHO - some of this is low growth hormone - it also makes us incredibly isolated.
I know my bones got wrecked up but not to the extent of your hubster - so hang in there and if I can help at all - let me know. I look ok so people cannot accept for the most part that I am disabled - they just don't understand how much of me does not work, and how sick, how fast, I get... like today. Ugh...
When my pituitary probs began many years ago I was did with osteopenia. Once I went onto rGH this actually reversed and my bones are now good 8 years later. I also try and take the minimal amt of hydrocortisone.
Everyone's is so different. I actually prefer it when I have someone who can come with me to appts. More so that I can really listen to the doc. That second person helps with things that I might be more sensitive about and maybe get a little defensive too. but they also stick up for me and verify things that I say too.
It's hard. If he is sneaking off to appts he must be really sensitive. Tough.
I was surprised that the endocrinologist said she didn't recommend growth hormone; she told me some % of effectiveness, but it was <10%.
Her recommendations were less desmopressin and/or more cortisol.
I see a lot of brain fog & confusion. He was always introverted, but now more so. I think as we age, our personalities can change too. I used to be more quiet, but sad; now I express my anger--no one likes that!
I look OK too, yet I finally broke down & got a handicapped shield. Now I see how few spaces there really are. I have begun writing letters to store managers--no responses.
People have no idea how difficult life is with an invisible illness.
The cortisol is going to wreck the bones more... I also used GH, like horselip, and my bones improved significantly!
The cortisol will also contribute to fog and confusion... he can simply get steroid induced Cushing's! Replacements are part art, part science and no *body* takes them in the same just as we don't all have the same symptoms or reactions - so you have to know what is going on and adjust. I am very very judicious with my cortisol adjustments and I have no adrenals and need it to live - as too much really throws me into a mess.
He needs help - but cortisol is rarely the answer. He may need thyroid, GH, or other adjustments.
*sigh* - I mean, cortisol is needed, and he has to know stress dosing etc - but large regular dosing usually dose more harm than good.
HELLO RUMPLED, SOME YEARS BACK YOU LEFT ME A MESSAGE WELCOMING ME TO THE NEURO FORUM. I HAVEN'T POSTED HERE IN A LONG TIME. I KNOW YOUR A CUSHIE AS AM I . DO YOU BELONG TO THE CSRF? THAT IS THE FIRST PLACE I FOUND WHERE I COULD HERE FROM OTHERS WITH ADRENAL/PIT PROBS, IT HELPED A LOT. I WAS READING SOME OF YOUR POSTS TO OTHERS. I SO UNDERSTAND HOW YOU FEEL ABOUT BEING DISABLED. THERE IS NO SIGN AROUND OUR NECK TO ANNOUNCE "DAMAGED INSIDE" NO ONE CAN SEE THE HORRIBLE MESS THAT OUR BODIES ARE INSIDE,THIS THIEF ROBS US OF OUR BODIES AND MINDS. I WAS SICK (ACTUALLY GOING TO THE DOCTORS) FOR 6 YEARS BEFORE BEING DIAGNOSED WITH MY PIT ADENOMA. I WAS FORTUNATE TO LIVE WITHIN TWO HOURS OF ONE OF THE FINEST NEUROSURGEONS WHO WAS ALSO VERY EXPERIENCED WITH CUSHINGS. I ALSO KNOW HOW HARD IT IS ON CLOSE FRIENDS AND FAMILY,MANY MARRIAGES DO NOT SURVIVE, AFTER ALL THEY ARE LIVING WITH A STRANGER. THERE ARE PHYSICIANS TELLING YOU THAT THERE IS NOTHING WRONG WITH YOU, HINTING THAT ITS ALL IN YOUR HEAD, EVEN WE BEGIN TO BELIEVE IT.YEAH WE ACT CRAZY, WHO WOULDN'T ( EVER HEARD OF STEROID PSYCHOSIS)? WELL I GUESS THEY WERE RIGHT ABOUT ONE THING "IT WAS ALL IN MY HEAD" CUSHINGS IS LIKE THE GIFT THAT KEEPS ON GIVING, WELL THIS IS ONE GIFT I WOULD DEFINITELY WANT TO RE-GIFT !!! I JUST HAD AN MRI AFTER ABOUT 5YEARS, BEING THAT I HAD LOST MY HEALTH INSURANCE. I WAS UNABLE TO GET MY REG CHECK UPS. THE RESULTS SHOW THE TUMOR IS BACK. I WAS AWARDED SOCIAL SECURITY DISABILITY ABOUT 4 MO AGO AND WHICH GAVE ME MEDI-CAL. SO I WON'T BE GETTING MY PREVIOUS NEUROSURGEON . I AM NOW HOPING TO AT LEAST GET A DECENT DOCTOR. THE DOCTOR I WAS SENT TO SEE MENTIONED I WAS A GOOD CANDIDATE FOR CYBER KNIFE SURGERY? DO YOU KNOW ANYTHING ABOUT THAT, AS FAR AS IT BEING A RELIABLE OPTION? I DONT WANT TO GET ANY MORE SCREWED UP THAN I ALREADY AM. AT THE TIME THEY FOUND MY FIRST PIT TUMOR THEY FOUND ANOTHER TUMOR JUST BY HELLO RUMPLED, SOME YEARS BACK YOU LEFT ME A MESSAGE WELCOMING ME TO THE NEURO FORUM. I HAVEN'T POSTED HERE IN A LONG TIME. I KNOW YOUR A CUSHIE AS AM I . DO YOU BELONG TO THE CSRF? THAT IS THE FIRST PLACE I FOUND WHERE I COULD HERE FROM OTHERS WITH ADRENAL/PIT PROBS, IT HELPED A LOT. I WAS READING SOME OF YOUR POSTS TO OTHERS. I SO UNDERSTAND HOW YOU FEEL ABOUT BEING DISABLED. THERE IS NO SIGN AROUND OUR NECK TO ANNOUNCE "DAMAGED INSIDE" NO ONE CAN SEE THE HORRIBLE MESS THAT OUR BODIES ARE INSIDE,THIS THIEF ROBS US OF OUR BODIES AND MINDS. I WAS SICK (ACTUALLY GOING TO THE DOCTORS) FOR 6 YEARS BEFORE BEING DIAGNOSED WITH MY PIT ADENOMA. I WAS FORTUNATE TO LIVE WITHIN TWO HOURS OF ONE OF THE FINEST NEUROSURGEONS WHO WAS ALSO VERY EXPERIENCED WITH CUSHINGS. I ALSO KNOW HOW HARD IT IS ON CLOSE FRIENDS AND FAMILY,MANY MARRIAGES DO NOT SURVIVE, AFTER ALL THEY ARE LIVING WITH A STRANGER. THERE ARE PHYSICIANS TELLING YOU THAT THERE IS NOTHING WRONG WITH YOU, HINTING THAT ITS ALL IN YOUR HEAD, EVEN WE BEGIN TO BELIEVE IT.YEAH WE ACT CRAZY, WHO WOULDN'T ( EVER HEARD OF STEROID PSYCHOSIS)? WELL I GUESS THEY WERE RIGHT ABOUT ONE THING "IT WAS ALL IN MY HEAD" CUSHINGS IS LIKE THE GIFT THAT KEEPS ON GIVING, WELL THIS IS ONE GIFT I WOULD DEFINITELY WANT TO RE-GIFT !!! I JUST HAD AN MRI AFTER , IN
HELLO RUMPLED, SOME YEARS BACK YOU LEFT ME A MESSAGE WELCOMING ME TO THE NEURO FORUM. I HAVEN'T POSTED HERE IN A LONG TIME. I KNOW YOUR A CUSHIE AS AM I . DO YOU BELONG TO THE CSRF? THAT IS THE FIRST PLACE I FOUND WHERE I COULD HERE FROM OTHERS WITH ADRENAL/PIT PROBS, IT HELPED A LOT. I WAS READING SOME OF YOUR POSTS TO OTHERS. I SO UNDERSTAND HOW YOU FEEL ABOUT BEING DISABLED. THERE IS NO SIGN AROUND OUR NECK TO ANNOUNCE "DAMAGED INSIDE" NO ONE CAN SEE THE HORRIBLE MESS THAT OUR BODIES ARE INSIDE,THIS THIEF ROBS US OF OUR BODIES AND MINDS. I WAS SICK (ACTUALLY GOING TO THE DOCTORS) FOR 6 YEARS BEFORE BEING DIAGNOSED WITH MY PIT ADENOMA. I WAS FORTUNATE TO LIVE WITHIN TWO HOURS OF ONE OF THE FINEST NEUROSURGEONS WHO WAS ALSO VERY EXPERIENCED WITH CUSHINGS. I ALSO KNOW HOW HARD IT IS ON CLOSE FRIENDS AND FAMILY,MANY MARRIAGES DO NOT SURVIVE, AFTER ALL THEY ARE LIVING WITH A STRANGER. THERE ARE PHYSICIANS TELLING YOU THAT THERE IS NOTHING WRONG WITH YOU, HINTING THAT ITS ALL IN YOUR HEAD, EVEN WE BEGIN TO BELIEVE IT.YEAH WE ACT CRAZY, WHO WOULDN'T ( EVER HEARD OF STEROID PSYCHOSIS)? WELL I GUESS THEY WERE RIGHT ABOUT ONE THING "IT WAS ALL IN MY HEAD" CUSHINGS IS LIKE THE GIFT THAT KEEPS ON GIVING, WELL THIS IS ONE GIFT I WOULD DEFINITELY WANT TO RE-GIFT !!! I JUST HAD AN MRI AFTER ABOUT 5 YEARS, BEING THAT I HAD LOST MY HEALTH INSURANCE (AFTER MY DIVORCE). THE RESULTS SHOW THE PIT TUMOR IS BACK. I APPLIED FOR SSI DISABILITY IN 2012 AND WAS AWARDED IT, AND MEDI -CAL ALSO. SO I WON'T BE GOING TO MY NEUROSURGEON AT USC, MEDI-CAL ISN'T ACCEPTED THERE. THE DOCTOR I DID SEE MENTIONED I WAS A GOOD CANDIDATE FOR CYBER SURGERY? I DONT KNOW ANYTHING ABOUT IT, AND I CANT SAY I TRUST IT. WHEN I WAS DIAGNOSED WITH MY FIRST PIT TUMOR THEY FOUND ANOTHER TUMOR IN MY OCCIPITAL LOBE, AND DECIDED TO TAKE IT OUT AFTER I RECOVER FROM MY TRANSPHENOIDAL RESECTION. I HAD THAT SURGERY DONE 6 MONTHS LATER. THEY GOT IT OUT BUT I LOST ALL PERIPHERAL VISION ON BOTH SIDES, AND HAVE BEEN LEGALLY BLIND SINCE. I STARTED LOSING THE REST OF MY VISION ALL OF A SUDDEN (WITHIN 6-7 MONTHS) COME TO FIND OUT I HAVE AGGRESSIVE CATARACTS IN BOTH EYES CAUSED BY THE CORTISOL I WAS SUBJECTED TO. NO WONDER MY FAMILY JOKINGLY CALL ME A "TEST CRASH DUMMY". ANYWAY I WILL NOW BE LOOKING FOR AN EYE SURGEON THATIS HIGHLY RECOMMENDED. WELL I GUESS I WILL END THIS POST FOR NOW AND TRY TO GET SOMETHING DONE IN THE HOUSE. TAKE CARE AND BEST WISHES.
I had a terrible time trying to read your post - sorry - but all caps, no paragraph breaks etc... so I think I am missing some information. If you could please not do that in future it would be most helpful... eek.
I am so sorry about all your complications. I have heard of cyber-knife and that is a decent option as it, per my research, has lesser chance of side effects and is nicely accurate. Protom beam though it the best if you can get it.
Steroid psychosis and myopathy are very real - shame the docs did not pick up on them.
So are you going for surgery or radiation?
SORRY, YOU HAD SUCH A HARD TIME READING MY POST : ( I WRITE
IN ALL CAPS BECAUSE I CAN'T SEE WHAT I AM WRITING UNLESS I DO.
I GO TO HAVE MY CONSULTATION THIS WEDNESDAY MAY 1ST. I
HAVE NO IDEA WHAT TO EXPECT YET. I WILL POST WHAT I FIND OUT
WHEN I GET BACK. I HOPE YOU ARE ABLE TO READ THIS POST
That is easier... many computers let you increase font size? I know I can do that - as well there is a setting here at the top to let you increase the font in the page here - I use the largest as well.
Of course, I just went to look for it to tell you how to select it and it is gone so I will go complain on your behalf - UGH!