i feel just helpless and dont know what to do . i have personality changes and anger outburst for almost a year now. the personality changes came on overnite and the anger outburst started slowly. i have reported the outburst to my neurosurgeon and he seemed worried and i had labwork done. i went back for a follow up and was told labs were normal and my tumor looked like it has dead tissue around it and never said a word about my symptoms and when i asked i was told he dont treat me for that ,but he wont refer me to a neuro that will treat my tumor symptoms.my anger outburst have gotten 100% worse and i cant control my anger . i have never been this person before. i dont like the person ive become and my family wont take me places anymore because of the outburst and im like a stranger to them. what is causing the changes and personality changes if not the tumor? has anyone been threw anything like this before? i am getting worried about the changes and in need of ideas on what is going on with me.
I am going to guess this is from the radiation.
I found this:
"Acute reactions occur during or immediately after radiation. They are normally caused by swelling and can be easily controlled with medications. Delayed or late reactions are normally permanent and can be progressive. They can vary from mild to severe and may include decreased intellect, memory impairment, confusion, personality changes among other changes. All symptoms would be dependent on the amount of healthy tissue targeted with radiation."
You have to remember that not only the pituitary was radiated, but other tissue was as well - so that tissue is being effected. You need to consult another doctor about the potential damage and get some help.
i went to a new pit endo friday and maybe shes the one to help me. i told her about the symptoms i was having and she sent me for cortisol stem testing . after the shot i had to go for another blood draw in an hour. i have never had any test like that done before . i dont know if it means anything but i felt better and slept good that nite? she was shocked i wasent on any hormones and told me the gamma will kill my pit hormones. while i was in lexington i went to my neurosurgeons office and asked if he could see me because of my personality changes, anger rages and my headaches are getting unbearable. i was told no and he dont treat me for that and find a neuro for my tumor symptoms. so i asked for my mris and was told sorry and if i want copies it will be a charge. my question is can he charge me for the copies and i havent seen my mris he looks at them and tells me or shows me 1 pic. why do i go to him if he dont treat my tumor only the surgery part? this is confusing to me and now i understand why i havent got the treatment i need. how can i get a neuro to treat my tumor symptoms without the mris? my neuro i see now tells me she treats my seizures not the tumor. you was rite all along my docs are nuts .this stress has caused alot of problems in my marriage .my hubby treats me as if im going retarted and tells me my brain is crazy to see a shrink. he wants me to believe im going crazy so im stressing out even more. thanks for all your help.
By law, they can charge you but usually CDs are cheap - ask for CDs - films can cost up to $5 a page and there are a lot of them. Instead of the neuro, go back to the place where you had them done - you usually can get one free copy since you never had one - or it may cost you a little - or just say the copy is for the doctor (it is) and it should be free.
I am glad the doc is shocked about the lack of hormones!!!! It is about time! She was testing the function of your adrenals to see how your body is working. Yes, the gamma is going to kill the pit hormones about time someone with an MD degree is awake and realizes you need replacements!
This is very stressful - your hubby should help you get the help you need, not work against you.
i wish i could just have one doc to treat everything. i dont understand why i go to my neurosurgeon for follow up mris and tell him whats going on if he wont treat my tumor symptoms.he keeps my mris in his office and wont send my neuro or gp a report or a copy of the mri. i just happen to have a mri report of my tumor from o6 and thats all the proof i have that i ever had a tumor and had to show my crainotomy scar to my gp as proof. i will have to find a new neuro as the one i see now says she dont treat my tumor only my seizures and tells me thats why i go to my neurosurgeon and he tells me he dont treat my tumor symptoms only follow up so no wonder ive been going crazy. i had the blood work done friday and havent heard from the endo yet . how long does it take for a stem test to come back? i had a urine di test that i couldent drink for an hour . i do miss the days that i dident know what a pituitary was and needing only one doc . i guess tax time i will get copies of all my mris and keep them with me . thanks for everything
It should only take about a week for the stim test results.
Call the imaging places - they will arrange to send the new doc the MRIs NO charge. Doctors can get them for free. Just the fact that your old doc is standing in your way shows he is not helping you. Call up the hospitals or imaging places, ask for medical records and tell the the new doc's name and address - she will get the report and CD.
When your new doc gets them, ask her for copies. I have loads of stuff myself - it is kind of overwhelming but sometimes I need it. Always ask when you get the test as usually then it is free.
my new endo was a big let down. i got a call and was told everything is normal and i wont need to be seen for 6mnts. i did ask for a copy of the labs and she gona send it threw the mail. i was so hopefull she would dx me and end my symptoms and now i feel depressed. i was so hopeful that my anger and personality changes was hormone related . my hubby says now that its not my hormones or my tumor its in my head . what do i do now? i know it sounds crazy but i was hoping that she would find something because i hate the person ive become . i feel like im starting all over again and will never find the problem. i know i need to find new neuro and neurosurgeon but all are in the same hospital as my old one. i have good insurance but not the money to travel outa state . my hubbys not supportave of me because my neurosurgeon says its fine ,so he sees no need in going else where.
i have tryed to get ssdi but i was told my hubby makes to much so i cant get it. when i had my stem test done she dident tell me what she was using. there was so much going on and so many people in the room i dident have time to ask questions about it. i got my labs in today and my neurosurgeon oders more labs than she did.
TSH .58 she wrote normal thyroid function
NO NUMBERS FOR CORTISOL ONLY NOTE SAYS ADRENAL FUNCTION IS NORMAL.
she wrote me a note that says... your pituitary function is normal .there is no need for additional testing or treatment. see you in 6mnts.
what do you think about my labs?? are my labs normal ? my craniopharyngioma was 22mm in 06 before my crainotomy and this 1 was size of a nickle and has caused me so much more problems even before the gamma . how can that be,im just confused do i just stop the fight and trust them and go to the shrink? thanks for all your advice and support. i have no support from my family or any and all my docs so im staying alone in this .
I don't know what the lab she used, but my FT4 needs to be on the high side - that looks low - and she did not test free T3. So she did not test much.
TSH is moot after pit surgery, but yours is way higher than mine (mine is .0008).
Your LH should NOT be single digits in my lab - that signals hypopit, same for prolactin.
What, they cannot give you the stim #s? Ask for them... I never go by the words normal as well, er, you don't look normal - if you posted those numbers to the expert (with ranges) I bet he would agree.
I wish you were not physically alone - you have people here.
I too, have encountered fits of rage and screaming and hollering at myself! My poor husband just goes to his room (we have separate bedrooms) and closes the door when this happens. It could be the smallest thing that sets me off - just like you. I had an ACTH Stim Test and other Pituitary Tests that are packed away now (moving) but I always forget to ask my Neuro what this could be? I mean aweful screaming and throwing "f-bombs" and swearing like I can't stop it. I never swear or never did before this. My son always said he had the greatest childhood (he's 21 now and in NY at college) and he said he never heard us swear and that's why he thinks he doesn't do it.
If he could hear me now - oh my god I embarrass myself and I know it's wrong but I just cannot control this. Is it pituitary related - a tumor pushing on the part of the brain that conrols our emotions? My primary said this - doesn't know a thing about my pituitary issues but why are we like this?? I would love to know why - I am not this kind of person really. I am quiet normally and do not speak out - I am either going through a phase or something in my brain is going haywire! Good luck to you and I hate to say this but I truly thought I was the only one feeling like I was crazy and really crazy by having these fits of rage. I feel a bit comforted by knowing I'm not along. Let's hope we find out what is going on - please keep me in mind if you find anything out and I'll do the same - I'll be praying for you brainpain!
im so glad someone knows how i feel and what im going threw. i have changed so much and not for the good. i have asked my neurosurgeon about this and he seemed worried ran labs and when my resluts came back low/normal i never got any answers. i have changed from a sweet loving person to someone you need to tip toe around. my mom wont go places with me anymore and we were very close and she tells me ive changed . i know the about how the smallest thing setting you off and not being able to control it. i went off on an old lady the door greater at walmart and cussed her out for stoping me to go threw my bags.i have cussed people in public and now i try stay home.my husband dont support me and its causing alot of problems in our marriage. i have even fussed with my parents and omg i would never do that before. i honestly believe its tumor related . my neurosurgeon tells me he dont treat me for my symptoms and my neuro tells me she dont treat my tumor so im being pushed from one to the other . i talked to my primary doc and she told me i need to go to a shrink so yea i went off on her and told her she was useless . i really thought i was going crazy to . if you find out anything please let me know . i dont see my neuro till april . i have tryed so hard to control my anger rages and it only makes it worse when i explode. i feel that i am gona lose everyone due to this before i find out whats going on.i dont think its a phase because mine has been over a year. what kind of tumor do you have? do you feel your tumor is being treated? do you feel alone in this or your family support you? i only ask because thats whats goin on with me and i thought maybe that was where the anger was comming from. thanks for your post and prayers !
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