got back form columbia ?

[testdeprived]

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

[rumpled]

CMP - comprehensive metabolic panel. ACTH (easily botched - tube must be chilled and spun on the spot), renin, aldosterone, dhea sulfate, free T3, free T4, thyroid antibodies, ferratin, vitamin D, PRL, IGF-1, LH and FSH, bioidentical testosterone, estradiol,... that is all I can think of for now.

[Jeannie0525]

Not sure if his MRI was done dynamically or not--not even sure if it was with and without contrast.
Do not think cortisol has been tested--if it was it would have been a few years back
He is scheduled to see primary care physician on 12-27.  I am asking for the following things to be done.
Repeat MRI  with and without contrast--will try to find facility that does dynamically also
CT of abdomen and pelvis  with and without contrast
Thyroid test
Repeat CBC--this has been abnormal last 2 times checked--although stable--hemoglobin was low
Fasting CMET
Cortisol
The ringing in his ears and head has not stopped.
Will go back to office his primary was before and get copies of his blood work and MRI
Any other suggestions

[rumpled]

Was his previous MRI done dynamically? Are all his tests done at the right time? Are they just testing a few things or going out more widely? Many things can lower testosterone - cortisol is one - has that been tested? Did you get copies of everything? Cortisol would also account for the diabetes, elevated prolactin, mood issues and depression - look up Cushing's syndrome. Also, go find a neuro-opthomologist.

[Jeannie0525]

Ok--where do I start.  My husband had tests done back in 05 or 06 that showed he had slightly elevated prolactin level ( I believe it was in the 20's) and very low testosterone level. He had an MRI that showed nothing conclusive ( if there was a tumor--was too small to see).  Saw endocrinologist -- prescribed testosterone which made him very mean (almost like a different person).  Not really concerned with his prolactin level -- said he really didn't think it was a tumor because his level was so low.  We gave up on the testosterone because could not deal with the personality changes--just was not worth it.  We have been kind of in limbo for awhile now about this as his primary also not very concerned about it. But lately there has been a nagging that just doesn't seem to go away that maybe some if not all of his problems for the last few years may not be connected with that prolactin level.  I did have his primary retest it this year and it is still just mildly elevated.  My husband is diabetic--pretty sure he was diagnosed with that first. He has always been very energetic and very strong.  All of that has changed.  He is tired all the time.  Gets short of breath just going for a very short walk.  He had a heart stent placed in 2007 and then in September 2009 he had triple bypass.  In March of 2010 had another heart stent placed and in April had another heart cath which came back okay even though he still complains of his chest hurting.  His mother had diabetes, heart problems, and cancer.  She died in her early 60's.  He has developed narrow angle glaucoma and had laser surgery on both eyes for this.  He is now complaining of a ringing in his ears almost all the time and I am noticing he does not seem to be hearing as well.  Complains of hurting all over and now seems to have an intolerance for cold--before he was outside in 30 degree weather with just a t-shirt and not be cold.  I think I am going to ask for his MRI to be redone.  

[testdeprived]

columbia is literally the most impossible place to ever contace...i call during office hours and get routed to voice mail(sometimes  ithere's a secretary during office hours) .....and they never return my messages...and the mri department is clueless as well....hopefully theyre out to lunch

and they still havent returned my disk.

im tempted to send in the records  i have without the current mri..just the old mri....howevwer  i doubt id get in doing that...plus columbia still has my films

[rumpled]

You may have a hard time getting insurance to pay for another MRI so soon. Since they are looking at pituitary, it makes sense that a pit guy will look at it - they are being paid for a pit guy to look at it. My tumor was all over the place but it was there at any time I had an MRI.

[testdeprived]

so you dont think i should worry about making sure they give me a neuro radiologist?
ugh its so hard to get them to answer their phones noone answered today

is it possible that if  i have the worst symptoms in the morning, that the tumor would show up more on the mri in the morning?

i was debating just asking the primary for another mri, instead of having us possibly pay for a second opinion.

[rumpled]

Columbia should be fine - they are a pituitary center. That is funny what they said...

[testdeprived]

oh ok, its a relief you feel that way. i was hoping  i wasnt the only one who had problems with the radiologists hahahah

u trust columbia to read scans right? i know you dot go to them, but you would trust them right? they are considered a pituitary center right? so i shouldnt have the same problem?

so im making the appointment for the second interpretation tomorrow. should  i say make sure a pituitary expert reads it?

its funny, at saint barnabas the original guy who read it wasnt even the ''brain'' radiologist. so i said i wanted their brain guy to read it, and that guy said there was nothing there..haha.

[rumpled]

I like the MRI machine - I rely on other doctors to read the scans. They are not a pituitary center so yup, their doc can't read them. I get my surgeon to read them.

[testdeprived]

at this point  i have everything set up for columbia to read it.  i know they are competent(at least the radiologist who read it the time the endo gave it)

and the primary care wrote the letter to insurance which ill submit.

i dont wanna shop to neurosurgeons. most of them are useless and will just tell me that the tumor is liek a pimple on the *** and doesnt hurt me...and  everytime  i hear that it upsets me.

only thing im concerned about is making sure columbia gives me the same radiologist who looked my films over the first time? or atleast someone from the neuroendocrine unit?
do uthink that's an unreasonable request? im calling tomorrow to ask. if they read it wrong also, not only will insurance not pay, but itll be more proof to nih that im tumor free haha.

im surprised  you like saint barnabas so much....i will NEVER go back to them!

[rumpled]

Usually to go to NIH, you have to submit old and new records - and they can see the tumor there and that your labs show something still and they *should* understand about MRI differences as well as radiologist skills...
That being said, you can find surgeons to read your films for free and get an email from them. You have been to Columbia - can you send the CD (copy) to a surgeon there and have them look at it and see if they will look at it? Try those avenues.

I tried a new doc elsewhere - he was awful. I will stick with my Pittsburgh doc.

[testdeprived]

basically what my thinking is now..is that  i am going to apply to nih as a pituitary patient. my primary care doctor, and horselip both think thats a good next step....

however to do sol i need an mri report saying i have a tumor LOL....the saint barnabas report is counter productive....

so basically  i was gonna get columbia to write a second opinion the saint barnabas films.

im not sure if you understand the situation well, maybe  i didnt type it well enough....although im sure you have stresses yourself.

but columbia didnt write anything formal for me THAT COSTS MONEY....so i was gonna get the reading written up by columbia..and my primary wrote a note that ill submit to insurance


BUT i wanna be sure that someone in colmbias NEURO center, reads my mri....or else ill be stuck with an incompetent radiologist like was so at saint barnabas.

and yup i gotta shop those labs around. i know my primary thinks something is wrong with me, and thinks my labs are off...but what else can she do for me? shes not an endo? is there anything  ishould ask her to do other than refer me to nih? shes done so much for me!

but yeah could i request the same columbia radiologist that informally read my films when the neuro endo gave them to them.....to read this batch...OR AT MINIMUM a neuro radiologist?


howd ur dr appointment in pittsburgh go

[rumpled]

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.

[testdeprived]

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

[testdeprived]

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

[horselip]

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

[testdeprived]

btw the columbia doc is a neuro endo not a radiologist...i am pretty sure she had her radiologist look at it.

[testdeprived]

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

[rumpled]

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.

[testdeprived]

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

[rumpled]

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.

[testdeprived]

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

[testdeprived]

which question should i  ask? sorry for the confusion..ive asked a lot here.