update and little confused

[brainpain]

its been a year since my gamma and its been awful. my migraines have intensifed and still non stop seizures even 3 in 4hrs. my teeth are getting weak and chiping,but i do grind during seizures.pain and swelling and bright sparkles behind left eye. i went tomy endo and complained ive been having lota symptoms the worse is the 5pnd month weight gain. i have lost all motovation , the fatiuge and the cant sleep and when i do its so hard to wake up no matter how much i sleep. im stayin sick and getting dizzy and get sick and feeling of passing out after 10min of doing anything. i have lost all intrest ingoing out or doing anything ,,and that has strained my marriage. im so irratated and very moody. i wrote the magic foundation and was told i was hypopituitary and needed groth hormone. i questioned my endo and was told i have been hypo for years but not to the point i need meds. i was told she didnt believe in growth hormone i told her if she felt like i do and a lil hope it would help she would try it and i wanted to .. so she gona have her staff look into it. the gamma is starting to kill off my pit very slowly but i was told surly to happen in next 5yrs.if i have been hypo for years ..shouldent i get hormones now with my symptoms ? if i feel this bad now how bad do i have to be before i get treatment ..and how bad do i have to be? im sick of waiting till #s get really bad and its tearing my family,,marriage apart. i was told to see a shrink and all my symptoms was depression.i gota call my sodium level was to low 127 . is my docs ignorin me ? i feel like a lab rat . thanks for any advice .

[rumpled]

Can you go to clergy or a counselor or friends (in this situation it sounds like friends would be chased away) for someone to talk to or someone to take you to competent doctors. Even a taxi at this point.

My weight never went down - I was 140 went up to 276 and now I am 205... I would love to be under 200 but just cannot get there.

Your family is ignorant of the details of the pituitary disorders and what has to be done for life - and it just, well, is abuse. You need to seek help.

[horselip]

hey look at my pictures on my profile. At one point I weighed 265# now I am around !80#, still heavy but losing slowly. It is the hormones. See if you can get your husband to look at it.
Once we got them right, I was able to stop gaining and then think about losing.
i am only sad because this has been going on for so long, it seems. We know what you need and so do you. Hormones!!!!

But your family is not helping because they don't get it! They think that you are under good care because the tumors are gone. They don't get that that is only the beginning. Now your hormones need to be monitored.

Of course I still support you, just frustrating that it's the same ole..
xoxHorsey

[brainpain]

i have gotten my feelings hurt so much its tearing my family apart. my husband has gotten hard hearted toward me. he has told me if there was anything wrong they would help and all my docs help me sooo much. he treats me like a lazy fat slob and we fuss alot. he tells me he cant take off work to take me to the docs i want to go to ,, he thinks this is in my mind!! hey if both tumors are gone (whats the problem)) i told him i cant see anything wrong with his back so theres nothing wrong then here we go again. i have begged for him to take me and told him if i get the help i need we can be happy again. i dont think he can handle all the health problems ive been and seizures im going threw. i told him the endo even said ive had it for years only for him to say but you not bad enough for meds. my inlaws was making fun of me for getting fat,,i had been 120 for 12yrs. i told them it was my pituitary and they grabbed there big ole bellys and lol told me well theres is bad to and just kept lol so loud and hard ,,i went off and told them thats not a bit funny. i am depressed and alone in this and none of my family believe me. i believe the only way to get the help i need is to drive myself. im not even getting help for the low sodium there so thats all i can think of now.ima lil scared because of my seizures and all and there is no other way. my mom cant drive that far and dad is really sick so theres noone else, i dont want you to feel sorry or sad for me this is just the way it is ..thanks for your support it does mean alot

[brainpain]

thanks rumpled,,horselip for your advice . i am very hateful and have gotten to the point i told my docs off. i asked my endo about if she was trained in pituitary hormones and told them i was pissed of and tired of being a lab rat!! i found out about the hypopituitary by lieing to her ..hope at dont bite me back. my old endo quit couple years ago and she took over and i told her he told me i was hypopituitary and she looked threw the records and told me i have been for years. so i got the info i needed by lieing ,and i lost all faith in her then. i had my letter from magic foundation with me and wasent gona back off. the endo they refered me to is not even 2 miles away from uk hospital. i just wonder what else they are hiding from me!!! i have read about people getting really sick and wonder if there gona let me die before i get better.im going to a new doc soon and have him refer me to the new endo and drive myself if needed.

[horselip]

Hey there-
We've been telling you all along, for years now, that your doctor is not good with this after care business.

Yes, you need hormones, testing in conjuntion with clinical observation and judgement! They nuked your pit gland, so of course it is not a happy camper.

In the past you've said that your family is full of excuses and that they won't let you go anywhere else. I guess the big question is how are you going to get them to change it this time around?

Venting until you are blue in the face isn't going to get you anywhere but more frustrated if you cannot get the changes that you deserve.

Healthcare is being denied to you that you deserve and need for life. I find it very sad that your family is not taking this more seriously. Meybe a shrink will help you to build up the courage and self love to stand up for yourself and not take it any more. Maybe that is the best advice for now?
I dunno, it makes me sad.
Horselip

[rumpled]

Welcome back...
I have long felt that your endo is abusing you - that is the only word for it. There are papers out there about the quality of life of patients and replacing hormones is what you need and they should look at all - ALL - the hormones you need and replace them to the levels that are appropriate to what you need.

I don't know why your husband does not understand - and takes you to another endo - your life and your life together would improve immensely. You have symptoms - there is treatment available - why is it not being given to you?

Low sodium can be dangerous!