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327385 tn?1378360731

endo is sick of me

i went to my endo friday and left hurt and confused. i told her about my symptoms and now im having joint pain. i told her i cant get outside in summer ,,because i get sick and pass out.i am gaining weight like im preg all in belly. she told me 6mnths ago i was hypopituitary but not bad nuff treat. i asked her bout that. i have no idea what my labs are and asked for copy and my insurance payed 1,000 for them.. she told me i didnt know what im talking about and i got mad and asked her if she knew about pit and she told me i need to cut down on my eating and i didnt need to see her anymore if my new labs are normal.i have had gamma . she told me i need to see a sike and that would help my problems and i could go out in the heat .. i want to knoe is she correct and whats going on? dont the gamma kill off the pit and do i never have to see a endo again? im so confused and hurt ,,please help me ,,i am giving up this fight
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Avatar universal
WOW! Brainpain...I think we have doctors tha might be sisters.... Mine just ran the same test andsaid the same thing....test showed my cortisol 0.5 w/flag it is too low...I've had low RBC's w/ Low-neotrophils. Bilirubin in my urine and she says I'm fine but the Urologist said I needed to see a liver specialist.....Did she refer me-no...then My neuro told me I need to c a kidney specialist, I told her, She ignored me....so 9months later my neuro Surg Doc asked me had I been to endo yet ...I told her what happen and she wrote a note to my Primary and she FINALOLY sent me to the Endo....Endo is saying the same mess urs is saying....Let me say this...They are PRACTICING!!!!  Fight for ur LIFE!!!!
Helpful - 0
Avatar universal
No- I don't feel ur doctor knows what she is talking about...Mines don't either.  I have medical so I don't have a lot of choices.  I go thru the same and I am not fat....U pray and stay strong and be AGGRESSIVE about ur health....Addison's gives unexplained weight gain and so does a few other issues....We both need new doctors...
Helpful - 0
327385 tn?1378360731
thanks so much rumpled !!! you have been very suportive to me and very helpful to me. i am goin to look for a new endo and praying i find a good one. i wrote the hospital about the way the endo treated me and how she told me i never needed to see her again. i pray she gets a good fussing at or better fired.
Helpful - 0
Avatar universal
I only know that test for Cushing's or for high cortisol. I did a form - the long form - to check out my ACTH secreting tumor but again, that is a elevation, not something that is low - so if you are hypopit, er, you would be low and of course you would come out low. Dex suppresses ACTH - so in reality it should be a test of location (as in it shows if the Cushing's is pituitary source) but silly endos use it as a test of exclusion... really silly ones use it for???

I will send you links.
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327385 tn?1378360731
i hope you get better care than i have . i go to uk hospital in lexington,ky. my first endo was ralph miller he was awful and was rude . when he retired i was happy. the endo i have been seeing is dr tannock in uk and the sad part is there is not many endos outside uk hospital. i know all the docs back up each other ..that is why im trying at a diff hospital all together. i am going to try lousiville and pray i get someone knows something..dr tannock told me she had expertiance in pituitary and tell me i dont need be seen anymore. the clinic she is in is called diabetes and obisity and there are a couple endos in there ,,so i lost my hope from uk. i have seen the website about uk and how they are pituitary knowlage but ive been going sence 04 and feel like a lab rat allways. if you find a good endo that is expreanced in pituitary thats not at uk please let me know..
Helpful - 0
327385 tn?1378360731
the test i done is for cushins ? omg my endo has no clue. her telling me if my test came back normal i didnt need be seen again ,,guess i wont need be seen anymore huh.why do docs treat cases they have no idea how to treat? im a lil nervous my neurosurgeon has retired and gota see a new neurosurgeon. i go april 5th for my mri and very worried. my husband is over bearing with my seizures and acts like the tumor and problems are all in my head . its very hard to try to fight when the docs are against you and your husband to. rumpled can u be hypopituitary and dont need hormones? that is agg me to death . every thing i have read says u need hormones . i just want to feel normal even at 50% as i was before,,that to much to ask?rumpled i would like u send me some links and thanks so much.
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Avatar universal
If you don't mind me asking, what hospital and endo did you go see in Lexington? I live in Lexington and am looking for a new endo too, and would love a heads up on who to avoid. I was diagnosed with a prolactinoma last May and my endo had the pituitary background, told me straight up it was going to be a life long thing to keep an eye on, and covered all bases. Only problem was he decided not to renew his contract and left the hospital literally right before my check up appointment in January, so I had to schedule with the PA in order to get in anytime soon. Loved that she was honest with me about having to consult my case with one of the actual endos still there, but I really want to find an actual doctor I can be confident with down the road for when I decide to try to have kids. I know I lucked out with my first doctor, but it seems like most of the endos left around here focus on diabetes and the thyroid. Being able to cross any off the list would be great or knowing about a good one would be even better.
Helpful - 0
Avatar universal
I think your hubby needs to rethink his support - I can send you some links to show him if you like.

I don't know why your doc wants to do a dex suppression test at this point - that test is for Cushing's and while I am not a doctor... I cannot think of how it is appropriate for you at this point (and besides, the test is not super accurate in diagnosis anyway - I failed it and so have hundreds) so er, ??? Why a test for high hormones when yours are low???

As for legal action - I will just say that it would be extremely stressful, time consuming, and some doctors may hesitate to take on a patient that has sued another doctor - so sometimes it is just best to report carefully to the state authority and let them investigate. Since pituitary is so NOT understood, it is very hard to find competent doctors and even some neuro-endos are still in the end-dummy category and you must know what is going on so you can move on if need be to get the care you need. Sad but unfortunately true. Do not give up on the fight - you deserve the care you need.
Helpful - 0
327385 tn?1378360731
thanks rumpled for your advice. i had asked her about it being for life and she told me i didnt know wht i was talking about.i have a new nero from a diff hospital and gona ask about a endo in that hospital.i know there are 3 more hospitals in lexingon,ky. i found 3 endos about 60 miles away from my home. my hubby dont like that idea and he says they will tell me same thing. i cant drive that far because my seizures and threatin to drive myself.i just want to get to the bottom of this and get the help i need.me and my endo had it out . after that she gave me steroid pill and i had be at lab at 8am. if the lab work is normal she said i dont need to come back again. if i go to a new endo and find out i am in need of hormones can i sue her for malpractice? i just want to prove her wrong and rub it in her face. .. im sorry but 1 more question .do  i give up on the fight if a new endo tells me im fine?   thanks for your advice it helps so much.
Helpful - 0
Avatar universal
It is illegal to withhold patient records. Send a letter to the state medical board with your evidence about her office not providing the records and the payment from your insurance company.

Re incompetence - we have told  you that over and over this doctor is truly not on your side. You need a new one. To tell a post op and post gamma patient that they don't need an endo is not usual and not done - pituitary is lifelong.

You cannot give up - you have to fight to live. You have kids to think about.
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