Aa
Aa
A
A
A
Close
765439 tn?1292960414

got back form columbia ?

well i went to columbia to see a neuro endo today, thought id write about it. The doctor says she doubts that i have any problems resulting from pituitary and that none of my symptoms point out as pituitary for her. she did however say she was gonna order a lot of tests, and  i got my blood drawn there. she also wants me to do a 24 hour urine cortisol as well. she said that usually small tumors dont cuse problems, but might as well look at the hormones anyways. im pretty sure she only ordered total t3 and not free t3, and free is better, but  i didnt press any issue.

they took about 10 tubes of blood and now my jaw is killing me for some reason.

btw  im pretty sure my symptoms sound pituitary..but every doctor says they dont..here is the list LOL

so to wrap up my symptoms are
low testosterone(got it checked)
headaches0not terrible but frequently
poor eye sight, double vision, blurry vision, sometimes see black **** i nthe air,
stomach issues(been having these for years)
focus, memory and basic feeling of being alive is gone
muscle and joint soreness
dizzyness
insomnia
feel pressure in the back right side of my head
i sometimes feel a beating there if i touch my head in that spot
i also freqently have chest pain
high cholesterals.
also sometimes feel like my head will shake  like i will have a seizure but i never do
constant dizzyness
difficulty forming sentences or getting point across
lack of comprehension and cognition i got fired from my last job for not knowing how to peel a banana and i cant hold jobs...im gonna be trying to get disability checks and might frop out of college because  icant stand the headaches.
pins and enedles
skin irritations
constant sore throat
sore neck
cramped figners
37 Responses
Sort by: Helpful Oldest Newest
765439 tn?1292960414
will taking aleve mess up my cortisol test?im taking it for my aw it wont close :(
Helpful - 0
Avatar universal
COMMUNITY LEADER
I don't know about the aleve. Safer to wait and do the test when you are off it.
Let us know about the tests when all is done.
Helpful - 0
765439 tn?1292960414
i took the aleve last night at around 12am,supposedly  it lasts 24 hours so  i guess ill do it tomorrow. so do you think al these doctors are rightt hat the symptoms  i listed dont point to pituitary? my thyroid numbers could be better. ive had a tsh of 3.22, and a tsh of 2.72 in the past(the 3.22 was done this april) also my free t4 was 1.0, and my t3 total was 110 (76-180)
although she didnt seem to have a problem with any of those numbers.
Helpful - 0
Avatar universal
COMMUNITY LEADER
Maybe she is going to treat the thyroid, maybe she will refer you out to another doctor. The symptoms overlap with thyroid too as well as many other things.
Helpful - 0
765439 tn?1292960414
i went to her and had all my old labs, and she looked through everything,and at the end of the session she said ''i dont think its a hormonal problem''..so in my eyes, it seems shes following the old tsh guide...but i think thyroid could definitely be causing me problems!!!!!!!!
if my pit comes back normal and she refuses to prescribe me thyroid  i might just ask my primary
Helpful - 0
Avatar universal
COMMUNITY LEADER
Or see another endo if your primary does not help.
Helpful - 0
765439 tn?1292960414
idk i got to be assertive. i think thyroid can really make me feel better.

so anyway, i started my cortisol test today,and had some questions.
im not fasting correct? i woke up at 9:30 today but as usual i felt tired. so i just went to pee in the toilet and flushed it..then i woke up at 11:15 and put that pee in the container. i will continue peeing until 11:15 tomorrow morning.

barb was telling me that the containers have preservative in them,but mine says plain and doesn't have anything in it.

ive been refrigerating it,but idk if the lab will. they kind of gave me attitude when i asked.
theyre like''youre supposed to be refrigerating them''....well duh lol...but so are YOU...

since pituitary and thyroid overlap,i am pretty sure i have one or the other. with a tsh of 3.22 and 2.72 my thyroid isnt producing what it needs( i guess t3 or t4?) and my pit is compensating making me feel like crap. although no doc ive been to including my primary who is very nice and even ordered my pit mri when the neurologist was useless seemed to have a problem with my numbers...but i didnt really request thyroid from her so i cant say for sure.

if the endo at columbia is useless,my dad nd i will request some thyroid trials from my primary.
Helpful - 0
Avatar universal
COMMUNITY LEADER
Your 24 hour test started from the first void - 9:30, so you have to finish at 9:30, not 11:15.

Always keep the pee cold and  yes, they do not - which degrades it... I use ice packs when I go there.
Helpful - 0
765439 tn?1292960414
great, they told me the opposite lol. i actually woke up at 12:15 and just made my last pee..figured it wouldnt matter too much.
oh well.
Helpful - 0
765439 tn?1292960414
i really hope columbia isnt the best this world has to offer...i am starting to reallllllyyyyyy fee discouraged...i figured if columbia cant help me...noone can this cant be true can it????

after demanding i get a call back because i never received one despite leaving several messages,i finally got w a call back....they were open from 8-5,and th4ey wouldnt tell me when shed call...she calls at 4:59 -_-.

anyways she said she had the radiologist look at my mri,and indeed my tumor was hiding..or the saint barnabas radiologist missed  it...her words exactly..were that her radiologist found an abnormal area that wasnt picking up the contrast properly..it was roughly a few centimeters...and possibly an adenoma BUT IT WAS OF NO CONCERN TO HER...and she wouldnt write me an addendum cause i didnt pay for one.
she believes my problems are not endocrine related....she said i could have been born with the abnormality in my brain that was a few cms. although barb says she was born with her rat clieft or w/e she has..and said i may have that..hers is small

she said  my cortisol was on the high side..but she said its cause im stressed about my bad health....she also said that my hemoglobin was high again..but to her it wasnt a concern it wasnt high to her..just me..it was 46.6 or something on a range up to 46.4?
i dont have the exact results yet..im picking them up on monday...but im in tears here...

i thought maybe thyroid was my problem....ive had tsh of 2.75 a year ago, and a tsh of 3.22 back in april....i thought it would be high this time...but it was perfect...it was 1.13..

if a columbia doctor couldnt help me,what hope is there for me? i fell like im just wasting my dad's money going to doctor's and proving my psychologist right, that I have a generalized anxiety disorder....i know im sick...i know there's something physiological. im 6'2 178 pounds...i have been lifting weights and excerscing for 6 years...yet i cant even jog a quarter of a mile without nearly fainting!! i get injured quickly, i dont heal...and this is in addition tall of the other problems i have been telling u guys for the last 2 years...at 21 years old this is horrid.

rumpled should i just give up on getting treatment? columbia neuro endo,who's on pit network,was not a great deal of help for me....ill admit she was fairly nice to me...but if she couldnt he; me who could? i doubt even friedman could!

also i got my cortisol tested at quest,and my other tests at columbia..she said she was faxing my blood to my primary and mailing me a copy,does that mean shes faxing just the blood...or the cortisol urine too?
im just o upset

if this site didnt exist id prob lock myself in my room,and cry all day....this site has helped me keep my sanity..there are other people like me...with small adenomas...with MY SYMPTOMS..people LIKE YOU...who were denied treatment....yet were sick...this site help me see,i might have a real issue,and not psychological.....i cant give up yet

also i had low vitamin d...back in february...and the doc told me to take 2000 units...well i wasnt feeling better and for the past 6 months ive been taking 10,000 units to feel mildly better AA DAY...and my recent blood work was only normal....l would think if i had a normal body taking 10k a day would put me in the high range...or hell even above..or kill me perhaps...but i prob have a problem absorbing vitd, if i could take that much and still be normal..although who knows maybe im low normal gotta see the result
Helpful - 0
Avatar universal
COMMUNITY LEADER
I am not surprised the radiologist missed it - they have a nice MRI but they don't do pit surgeries there.

Just because it is listed on that website does not mean they are great. My first doc was from there and he was horrible. I also went to Columbia and had no luck as anyone I know that went there.

It took me over 10 doctors - so your option is to keep trying, or stop. Your option.
Helpful - 0
765439 tn?1292960414
i guess my next step is to let you know my labs when i have them...hopefully ill receive them tomorrow also...is encouraging that you and your friends did not find columbia helpful,yet still had real problems that werent ''in your head''...just in the pit=p

ill post my results as soon as i get them,hopefully then we can see what's going on with me..she  did do a nice workup I think..although nothing concerned her -_-
Helpful - 0
Avatar universal
Hi,Please .present your case to Prof.Dr.Garth Nicolson at Autoimmune Disorders Community(doctors expert)forum.Just repead your question from Oct 14,2010.He will be answering question for two more days.
Helpful - 0
765439 tn?1292960414
which question should i  ask? sorry for the confusion..ive asked a lot here.
Helpful - 0
765439 tn?1292960414
wow you were so right about the radiologist hes clueless...luckily ive had a film technichian whos been taking care of me. sty barnabas has been an awful experience.

as u know the columbia radiologists said that my tumor was in fact still there

anyway..as i told u when i first went to st barnabas i didnt bring my old films...but i brought them later and i got the addendum back today....and the st barnabas radiologist said i have no evidence of a tumor...so i spoke to the technician and i am filing a complaint with him...i trust the columbia radiologist...they found the exact thing as on my previous reports. do you think its right im filing the complaints? i just want a proper report...because now even my primary doesnt believe i have a tumor anymore! lso if i want to get into the rare diseases cinic at nih i need to have diagnosis
Helpful - 0
Avatar universal
COMMUNITY LEADER
I would not file a complaint. I would however give them a copy of the report from Columbia. He has not harmed you as they usually put language in about what they can see etc. You can do what you want, but I don't think you will get satisfaction and you will never get to go back there.
Helpful - 0
765439 tn?1292960414
i dont have a report frrom columbia. st barnavas said its illegal for anyone else to write a report besides him,so now im stuck with a report saying i have 0 tumors...when i do still have the small one. columbia cant write the addendum. if i  dont file a com[plaint i wont ge tthe proper addendum. besides i was thinking my next mri would be at nyu..i think they are allowing people to use a 7t for research...or perhaps ust go to columbia
Helpful - 0
Avatar universal
COMMUNITY LEADER
I had a similar situation - you can give the info to St B. and he can decide to add info or not. You may have to get a doctor to push as yes, the Columbia doc cannot write anything directly but the info he has is relevant to your case. I think most people will believe a surgeon over a radiologist anyway.
Helpful - 0
765439 tn?1292960414
well the technician took good care of me...he got me a calll back yesterday...supposedly the radiologit who read my report and ddi the addendum and all was a high up radiologist....he was not the brain radiologist though. I have faith in st barnabas,since you seem to like them. They are having the brain radiologist look at my films today I think. hopefully he sees what's going on.
I should have all my blood results by monday btw...my primary care doctor got them yesterday, but they want me to pay 2 dollars. I know the endo sent me  a copy, but  if  I dont receive them by monday I'll just pay the 2 bucks.

at s.b i already had him write an addendum, which is what made me angry. The addendum says no evidence of  a previously viewed pituiiitary adenoma can be found from the current pics...the technician and his supervisors got pretty angry themselves at how dissatisfied I was, and they took good care of me. Hopefully the brain radiologist is competent.

I think itd be so cooll to get my next mri on a 7t as part of a research study...when im ready ill have to call nyu
Helpful - 0
765439 tn?1292960414
btw the columbia doc is a neuro endo not a radiologist...i am pretty sure she had her radiologist look at it.
Helpful - 0
596605 tn?1369946627
Will your insurance pay for you to have a second opinion via another radiologists report that is official and written from the surgeon that saw something else? Maybe it is just a matter of asking for something official and having your insurance pay for it. You might have to make an appt with that surgeon for a consult but that might not be such a bad idea if you get a second set of eyes looking at your MRI.
Horselip
Helpful - 0
765439 tn?1292960414
it wasnt a surgeon who looked at it though..just the radiologist at coolumbia...besides the columbia team said they arent concerned with it..so they are a waste of time
Helpful - 0
765439 tn?1292960414
so i have two options.  icalled my insurance. columbia charges 300 dollars for a second opinion reading on the mri. my insurance said that if my primary doctor submits a note or any records stating its medically necessary for a second mri opinion reading on the st barnabas films, they will MAYBE pay for it...

so my primary wrote me a note.

but i have two questions...


1- insurance said could go routes....get a new mri at columbia and pay the 50 dollar copay and just get a report from columbia for the new mri


2- either route  i go with(the second opinion from columbia....or the new columbia mri)....i wanna make sure  iget the same radiologist to read my mri that read them when the neuro endo showed them to him/her.

if that one cant...then i want SOMEONE from the neuroendocrine unit to read it...otherwise im back to square 1...butt his time  i have 2 mris proving no tumor...which makes things look worse when i apply to nih for diagnosis as a pit tumor patient
Helpful - 0
Avatar universal
COMMUNITY LEADER
If you go to another pituitary center - they will look at the films and see the same thing that Columbia did - so despite what is on the report, there is something on the films and you have previous films as well. Since your lesion is small as well, and MRI slices are 3mm - it can also just be due to the positioning of the MRI - it can fall between or largely between the slices and look different. The labs should be the most important thing. I would shop the labs around and once you get to another place, they will do another eval of the MRI CD anyway.
Helpful - 0
2
Have an Answer?

You are reading content posted in the Brain/Pituitary Tumors Community

Top Cancer Answerers
Avatar universal
Northern, NJ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Here are 15 ways to help prevent lung cancer.
New cervical cancer screening guidelines change when and how women should be tested for the disease.
They got it all wrong: Why the PSA test is imperative for saving lives from prostate cancer
Everything you wanted to know about colonoscopy but were afraid to ask
A quick primer on the different ways breast cancer can be treated.
Get the facts about this disease that affects more than 240,000 men each year.