labs and neurosurgeon

[brainpain]

i went to my mri and neurosurgeon appt thursday. my surgeon told me i had dead tissue and the tumor was a little smaller . he was in a hurry and dident take much time with me and i dident get to see my mri films,so im upset over that. i asked as he was walking out about my labs and was told everythings normal. i asked for copys of them and on the way home i got really upset. i called his office to ask questions and for a referal to an endo but dident get a call back and i wait 6mnts to see him again. heres my labs
acth 210  (6-58)
cortisol ,serum  6.7  (3-14)
free t4 0.8 (0.5-1.0)
tsh .6 (.5-4.0)
free t3 3.0  (2..4-4.2)
hgh 0.23  (.03- 10.)
igf 131 (63-330)
prolactin 10.6 (3-24)
im worried about the acth . my acth has never been so high. there is a note on my copy by acth that says abnormally high ,so how can my labs be normal?

[rumpled]

What kind of referral - just a note from the doctor to say you have a pituitary disorder? Call back the other doctor from magic and ask what type of letter and what type of doctor can write the letter. You may be able to get your pcp to write it.

I was in the same boat for a new endo - but I got around it by faxing over a boatload of records - he saw I was totally on the up and up and so he took me as a new patient. So you can also try that as well - a cover letter, your own records - one page cover with summary of why you want to see him, a page of meds and surgeries, and latest tests and MRIs and pathology - it was 18 pages.

Try that!

The stim test is used as the IGF-1 test is not a perfect test as IGF-1 pulses so they have to use the stim to makes sure it is really low. Your doc though can make a case as GH should be pretty lost since you have had surgery and gamma though - but it is all a matter of fighting the insurance company.

Your surgeon is being a ...

[brainpain]

i was so worried when i read he was in a diabetes clinic. i had called the endo and told him the magic foundation sent me his name and i wanted an appt with him. i was told i needed a referal so i called my neurosurgeon and asked to be refered to him. well its been awhile so i called my neurosurgeon to see if he gave me the referal and was told no that my surgeon said he wasent in his network? i thought my surgeon would be the best person to refer me because hes got all my records and films . i looked on the uok site and found an endo that specialist in pit disorders so i asked to be refered to him. im just lil worried its gona be a waste of time because of the connection with the same hospital. i read up on him and hes board certified and was trained in wv hospital. im not giving up opn the endo that magic foundation told me about at all. if this endo doesnt work out ill go to my gp for the referal. is it true that if you have seizures and a pit tumor and had gamma if your hgh and igf1 is low you wont need the stim test? im so weak i cant do much around the house without getting dizzy and sick and feeling like im gona pass out. i just wana feel normal again,not a lazy slob.my legs and arms were so weak and heavy / numb . whats going on with that?

[rumpled]

The old test was not as hard on people but now they use insulin to stress the body and it can be harder. The doc will have to evaluate what to do and there are different stim test agents out there. It is just that insurance requires a stim test to get the GH (but then gives you a super hard time to pay for the test!). They put in a line so you are only er, stabbed once. They monitor you for any issues.

Some of my docs look like they work in a diabetes clinic but they do pit work.

I don't know docs in KY, sorry... but I hope he helps you!

[brainpain]

i understand what your saying about the docs. the problem i have is all the neurosurgeons at uk in lexington has joined into a new huge office, all work together. i am trying to get an appt with the endo the magic foundation gave me and pray hes good.  i have looked him up and hes in a diabetic clinic? the magic foundation told me he would dx me with hypit and ghgd and get me started on the meds i need. i have a question for you about the gh stem test. i have read its not safe for people with seizures so how would i get the test i need to prove ghd? i have hgh test and igf1 and on low side . i havent ever had alot of testing like i have read about. i have never had blood draws every 30min . my bloodwork has allways been go get bloodwork ive heard freeze the purple tubes but thats it i have never had that kind of testing and how do i get that kind of bloodwork done? my docs say im normal and thats it. the endo magic foundation told me to see is( wendell miers) in lexington,ky. have you or anyone heard of him? magic foundation says he will give hgh and sex hormones and i need thyroid to. im praying hes gona be the help i need. any advice on the hgh stimulation test as i have uncontrolable seizures? the more i read the more confusing it is. my qol is awful now . you have been so helpful to me and i do thank you for all your help and time you have gave to me ,thanks for everything i hope all is well with you.

[rumpled]

Doc won't talk about other docs - they will refer you to others - maybe - they form groups and part of that is that they can't refer out of the groups.  So asking is a frustrating process. It is better to go to rating sites, or talk to other patients in a network...

Cancer is very well researched, pituitary disorders are considers rare, orphan and thus the funds are not there. We need a celebrity to come forward with a pit disorder to get bucks - there are celebrities with them, but few want to say they have it. And as we all well know, docs are reluctant to diagnose anyone with anything pit!

[brainpain]

thanks for your support. i honestly agree he does need reported ,but im so scared. if he does get in trouble what will i do? i know theres 3 neurosurgeons that practice with him and all look to him for answers and follow him and agree with what he says. the most important is he did the crainotomy and i can still walk,talk and im still so called normal. its a hard place im in now.  testdeprived yes it is true i was one of those people and i honestly believed 4yrs ago he was the best and had no worrys. i got smart and started looking my tumor up and man was i took advantage of and still am. my mom just beat breast cancer and now this,oh drives me crazy. im gona talk my neuro about my surgeon and see what she thinks and get reports from my mri and she will give me copys. thanks for everything

[rumpled]

That is so sad about your mom - and just more proof that the doc needs to be reported to the state and have his license taken away (hint hint).  

[testdeprived]

the sad thing is,some people trust their doctors(which is an admirable intention) and most doctors are buffoons.

[brainpain]

i think you would be a great endo . i have my seizure neuro and my mom has been having sever headaches and went to her. my seizure neuro sent my mom to my neurosurgeon because my mom has a bleed in her brain and mini strokes. im really worried about her and for myself now. rumpled can you believe my neurosurgeon told her its normal to have mini strokes and the bleed was fine!!! he told my mom she was fine to go home and do all the house work she wanted and she could even work on a car . my mom went back to my seizure doc for follow up and my seizure doc told my mom my neurosurgeon was senial ,so thats who ive been letting play with my brain!! the magic foundation was great and very helpful to me. im hoping the neuro they gave me info about works for me .  zeein go to the magic foundation and tell them your problems and they will give you names and numbers of endos or any other contacts you need. thanks for everything

[rumpled]

Face it, your current docs are in deep water when it comes to your situation - they don't have a clue - not one... so you need to find new and start over. I a glad you got a new name - magic is great. Gee, someone agrees with me...
Neuros can't treat pituitary - and it sounds like they are clueless about the rest of your situation...

Zeein: Thanks... I hope you find a good neuro-endo and get the help you need!

[ZeeIn]

You guys are awesome!!  I've been going through the same crap for a little over 6 years. Went to Mayo, tons of Doctors and totally forgot to ask for an Endo at all.  Retarded.  My brain just doesn't work half the time anymore.  I forget everything. Can't drive due to severe Hypotension and blackouts.  What I need is a neuroendocrinologist.  I have neurological, heart and endocrine issues. However, I can't find "one" in the State of Florida. They train them at UF and I guess they all head West. I am beginning to think all good Doc's go West since they surely are clueless here. If I had the money, I would go to see a Dr Friedman or Cohan(I think) in LA.  They treat our Pit, Adrenal and Thyroid problems all the time. I read they have significantly helped people after fighting the disease for over 15 years.  Time for us to migrate west.  Lol.  

[brainpain]

i had told her about my symptoms and getting weak and dizzy falling off my porch. she had done labwork on me and told me i was fine and acted as if she knew all about pituitary tumors so i asked her those questions. i dont plan on ever seeing her again unless my mamogram comes back bad . i called the magic foundation and talked to them about my symptoms and labwork and they agreed with you i need a better doc. the foundation gave me a name of an endo in lex that is a ghg and pit speclist . so as for now i feel a gleam of hope. i had a pamplet with me but he wasent intrested and told me just to have the card . i have an appt next month with my neuro and gona ask her about it . thanks

[rumpled]

Your family doctor is not skilled in any way, in other words NOT AT ALL, to treat rare diseases like pituitary lesions or what you have going on... but based on what she said, I would find another GP as she is not even sympathetic to your plight.

She is correct that it is in head but it is a physical not mental issue...

When you spoke to the tech, did you have the brand of the implant? If so, call back and talk to the supervisor re having them research if it is MRI safe and explain your situation.

[testdeprived]

aas long as its mri compatible you should be fine. make sure its 3t compatible. 3ts are twice as strong as 1.5s, so maybe when they say mri compatible they just mean an open .25 tesla...you gotta ask for speciifc. anything less than a 1.5 tesla closed is useless...and obviously a 3t is a gold standard...but then again my tumor was seen on a 1.5 and not a 3t. and  ive seen anecdotes that 1.5 is better...but ive seen way more that 3t is the best for things.

[brainpain]

i did ask my mri tech when i was having my mri about the implant. he told me he had no idea and if it says pacemaker its a no . i told himd that its mri compatable and he said i would have to get the card and to make sure before i had it done. the implant is to control my seizures and i dont think i can take the chance of having it done. i just cant risk not watching my tumor. i went to my family doc today and showed her my labwork and asked about the acth and she blew me off. i asked if pit surgery makes a diff in the labs and she laughed at me! i felt stupied and she dont know why im dizzy ,weak and have anger rages and told me it was all in my head and i need to see a shrink! i had to beg her for a mamogram as im to young and my mom had breast cancer . i told her she was useless to me . i told her i was so dizzy and weak i fell off my porch and its all in my head. i have lost all hope of getting the dx i need or to ever get better becasue she told me i need to exercise ,i told her i allways pass out and nothing. i cant travel as my hubby is possive and wont let me go overnite anywhere and wont take time off work to take me . im at a loss and tired of begging all docs for help. im sorry for venting on you but im stuck and no way to get help.

[rumpled]

SSDI depends on what you can or cannot do - not on what your husband makes.  I think there is a community here about it.

Your BP may be trending low - you should track it. Also the pulse. You may have POTS. I have that - I can't get up fast.

Ranges are ranges - but that does not mean they are normal. Like thyroid, certain ends of ranges are optimal.

Re the MRI, call the MRI place where you usually go and ask to speak to a tech in regards to the implant. They have to know.

[brainpain]

my husband makes to much for me to get ssdi. my husband has insurance threw work so thats a blessing. i only wondered about the bp because all my family has high bp and mine seems so low compaired to everyones. i just thought maybe it was why i was having blackouts. im just losing hope at getting a diagnose or ever feeling better. im tired of looking preg and the breast leakage . i do know i need better docs but getting to them is my problem. im stressed trying to find a good doc and tired of trying to convince my husband i need to go and something is wrong, im not just lazy!! its depressing trying to convince my husband and the docs something is wrong when all i hear is your normal range . i do know im depressed ,but im in this alone . the vns implant states no full body mri. when i have my mris im in to my waste. i know the mri is for the brain but would that be the same? i really want the implant (pacemaker for seizures) but not at the cost of my tumor mris.

[rumpled]

Have you applied for SSDI?  But then your docs are not that supportive...
Your BP seems ok to me but I am not an expert. Your hormones are so off that is probably what makes you feel horrid.

I have seen a lot of neuro-endos that were horrid... so they can be good and bad - you have to find a good one.

[brainpain]

i have asked doctors about a differance in my labs because of the surgery and gamma knife. i get a crazy look or a laugh and told labs dont lie and it dont matter. i had to quit my job and i cant drive and i dont have the money or way to go outa state. i have 3 kids i take care of and its my job to make sure there off to school , homework and everything else so im in this circle of endos . i still havent heard from my surgeon and plan on calling in the morning for a referal to another group of endos. the endo that i seen before has left the office and im thankful for that. i seen one on the list that has intrest in pituitary problems,thats the closest ive seen dealing with pit problems. my hospital is university of kentucky. i go to neuroscience and my surgeon is young. look up the hospital and the site says they spealize in pituitary . i just lost my will to fight this ,i just dont know what else to do and no help to is hard. thank you for your help and support you have been great. i honestly think if it wasent for my kids i would just stay in bed. i got sick and took my bloodpressure it was 101/75 . could that be why im feeling sick? thanks,brainpain

[rumpled]

Until you see a competent doctor - one that really know that your tests are NOT normal for a person that is post op pituitary (there is a difference!) that your symptoms will start to abate.
I have been to a lot of doctors - one tried to adjust my ACTH via taking away my cytomel...so you just never know what the heck a doctor is going to do.

I am still hunting up docs to help me now that I am way out of the box - it is hard.

[brainpain]

i feel so confused with all this. my husband hears oh your normal and thats all it takes. im not the only one that was paranoid with a tumor. my last one dident bother me as much , but i dident have internet either. i read up alot after my surgery and couldent believe how much i was kept in the dark by my neurosurgeon. i dont understand why if my labs are so easy to see that something is going on why dont any doctors see that? is it that hard for any endo to read my labs a see whats going on? they make me feel crazy like its all in my head or that i just want to be sick. does that make sense? i want to be able to walk without feeling drunk and going off on strangers and the feeling that im just evil scares me.

[rumpled]

Your depression is actually a symptom of what is going on with your pit - besides the stupid treatment by your docs, family etc.

Plus the tiredness etc. I got severely paranoid with one of my tumors - it was awful. I also had heart issues - some of my buddies died of them. I am concerned for you - as no one seems clued in that this can be pretty serious.

I will see what I can come up as far as docs for you in PM.

[brainpain]

i have tryed to find a new endo . i have been to so many all just tells me i am depressed and have anxiety. i was dropped by my last endo 3yrs ago because i asked questions and he was mr know it all. ive been having so many seizures and black outs and im staying dizzy like being drunk i cant drive now.  i do have a copy that said i should be on gh 3yrs ago. all the endos are in the hospital with my surgeon and he says my pit is not damanged and all docs agree with him and send me on my way. i have asked my family doctors for referals and i get told my labs are normal ,no need. i am at a loss i have been threw so many doctors and none will refer me and treat me as if i am crazy or drug seeking. the heart issues really scares me because my dad has heart trouble and 3 of my close family members have died of heart attacks. i just want to be able to do things with my family and feel good again. its ashame the only endos are over 40 miles away and thats the quacks ive been to. i see my regular neuro in the morning and will show the labwork and ask for a referal. is there any other doc i can see that can help with this?  im at a loss and feel betrayed by my doctors. is there any symptoms i need to worry about and get help asap? thanks for all your help!

[rumpled]

Actually, to think about it more - my ACTH is elevated only because my adrenals are gone so your ACTH should not be high... so yours is totally abnormal. Sorry about that.

You really really really really really need to get to another doctor - once you get on GH, you will feel tons better - as well as a proper thyroid dose and you may need some treatment - something else may be going on up there. ACTH = cortisol and that can be the anger and depression issues. Yes - those can be dangerous. Cortisol is what made me disabled - but it has made friends have heart issues, as well as worse, and impacts the whole body.

You cannot lose weight - you really really need another doctor.