Went to Endocrinologist Wed. Not a good visit...

Discussion in 'Fibromyalgia Main Forum' started by kjfms, Jan 26, 2007.

  1. kjfms

    kjfms Member

    As most of you know I have a pituitary tumor that has been growing pretty fast. 01/06 4-5mm to 1.3 x 1.1 x 1cm 12/06 I thought it was Nov. but actually it was beginning of Dec. anyway...

    The endocrinologist that I have been seeing refuses to believe that my symptoms are being caused by this tumor and I have been very upset. I could not make him see reason.

    I had my lists of symptoms, baggies of hair (that I have been saving) that has been falling out, lists of questions. I had all of t's crossed and my i dotted and this physician still would not listen. I did everything but lay in the floor and scream -- maybe I should have done that...nah with this I doubt it would have worked.

    I have every symptom of hypo-pituitary but he says no because my numbers are in most are on the low side of normal I might add.

    This physician would not even discuss anything with me the ass and I will not be going back to him.

    He did say that it does need to be taken and is referring me to a neurosurgeon who has experience in this surgery so that is the only good thing to come out of the whole visit.

    I was so angry when I left I had tears of frustration in my eyes.

    I am doing all of this through a free clinic and for the most part they are doing pretty good and hey beggars can't be choosers -- right?

    At least there are other endocrinologists who go there and I will ask about seeing one of them instead of him.

    The really bad thing is I used to see this endo when I had insurance for my thyroid and he was great but he was getting over $150.00 per office visit then. Now coming to this free clinic just looks good on his resume.

    When I asked him about the reason for the tumor growing so fast he said "I don't know." well at least he was honest about that.

    Good grief why did he just pass me on months ago to someone who had experience with pituitary disorders and why didn't I ask?

    Heck I always ask questions -- I am so mad at myself for being taken in just because he treated well for my thyroid condition and thinking he could handle this situation. Could I be even more ignorant?

    I have been so angry the past few days and now I just feel defeated, lost, beaten.

    Sorry I always try to stay positive but this has really gotten me down and the stress has got me an FMS flare -- oh joy. Could anything else happen?

    I am just hoping I do not have to wait too long to see this neurosurgeon. I am having nose bleeds more often but hey I am not supposed to be having any symptoms right?

    OOOHHHH I am getting mad again that endocrinologist has me so angry -- I could just spit nails ... at him and hopefully hit him in the eye and maybe he would get an idea of the type of headache I have several times each and every day.... The Idiot

    Aaahhh -- sorry but that felt good thanks for letting me get that out but I am still mad and would still like to smack his smug Kojack looking face!!!

    Yeah I sound childish and really don't care venting is good for the soul and keeping things in is unhealthy.

    OK if you have stuck it out this long you are a champ and I really appreciate. This board has the greatest people on it.

    I really thank everyone who has been so supportive of me through this whole ordeal -- you all will never know how much it really means and how much it really helps me :)

    With the stress of all of this and the weather -- we have the snow that I love sooooo much and comes with such a high price.

    Once again FMS rears it ugly head as if to say "Hey don't forget about me I'm still here." as if...

    Thanks for "listening",

    Karen :):)

  2. mamagibby

    mamagibby New Member

    Hi Karen, I'm kinda new to the writing part of these boards, but just wanted to say "goodness , enough is enough allready"!! I'm sending good thoughts your way, hopefully you'll find a new doc with ears this time! Smack away!!!
    From one FMS to another-God Bless,
  3. kjfms

    kjfms Member

    So nice to meet you :) it is very kind of you to read my entire post. I tend to run off the "fingers" when I am upset with good reason IMHO.

    Thank you so much for you kind words of support I really appreciate them.

    I love the picture in your profile! What cute puppies and those hats are too sweet -- the three of you take a great picture.

    I lived in Houston and then in Humble in the early 80s and went to Conroe a few times -- brings back a lot of good memories.

    Take care,

    Karen :)
  4. mejlee

    mejlee New Member

    I'm sorry, I love a good rant!!!! It is good to let things out! Especially when it is somewhere safe like this board.

    Isn’t it sad that we “can not” or “should not” speak to those horrible Drs that way when they so rightfully deserve it. I think Endos can be the worst (sorry if I offend anyone) I had an Endo tell me once that I “didn’t have a goiter I was just FAT” (which I was not, at that time:) ) But of course he ordered a couple of tests. (he had to make some money off of me) What a dumb butt. So then my dear GP sent me to a physical rehab Dr., (he was not happy with the way my neck looked and he wanted some answers.) who told me “there are no muscles in your neck that can swell”. Lordy, Lordy what we have to deal with! Hang in there, you’ll find a good Endo. Stay strong!
  5. Shalala

    Shalala New Member

    Some of these Dr's are total asses. You can rant to us all you want hun ;-) many of us can relate to insensitive Dr's. I have a tumor on my right adrenal gland and the Internist I saw about it wanted me to have it checked annually (scan) to assure that it was not growing. Welllllll ... my PCP brushed that off with "those rarely grow" ... wellllll ... it grew there somehow! lol So she reluctantly agreed to order a scan (like it was coming out of her friggin' pockets!). It also took her 2 years to finally admit I have FMS!!!!! She said I do not come in often enough complaining of pain ... lol. I CAN'T AFFORD TO COME IN!!!!!! I am poor! The pain is definitely here. And coming in to her doesn't ease my pain. So we understand your frustration. I hope that you can find a good Dr that can help you.
  6. Catseye

    Catseye Member

    So sorry for you! I've had my share of idiot doctors who can't see past a "normal" level test result. Never mind that my liver and my adrenals were exhibiting symptoms that were literally screaming "warning, danger, imminent failure observable on the horizon", they still insist because the levels are normal, that they are JUST FINE!!!

    After reading so many rants like these, I'm beginning to think it's alot more than just a few docs who are stupid. And if you want to go after them legally, you have to find another who will go against the first. And, SURPRISE, they don't like to do that!

    Isn't there a way we can interview a doc before we go and pay for that first appt so we know he is more than just a feeb? It doesn't do any good to ask his office if he is familiar with a certain problem because they always say yes.

    Someone should start stupidocs.com where we can list the ones not to go to. That might make some of them pay a little more attention to their Continuing Professional Ed courses, at least.

    "Hey Joe, I heard you're on the list."
    "Oh yeah, I can't believe it, I have no idea how that happened?"
    "Well, have you had any difficult cases, lately?"
    "Now that you mention it, I had this girl with a tumor, she kept insisting that it was causing her symptoms and she even knew about the symptoms of hypo-pituitary."
    "So, Joe, did you follow up with that and investigate her symptoms in your AMA journals?"
    "Hell, no! I couldn't let her think I was ignorant about something. She would have lost all confidence in me! Besides, it was almost tee time and I had to get rid of her."
    "Joe, that was unethical, rude and may even cause someone to die!"
    "Yeah, your point being?"
    "Oh, nothing. BTW, can I borrow your Vette? My Porsche is in the shop. But don't worry, I have a new chronic fatigue patient who's REALLY messed up, and - even better - she doesn't know anything about it! I'll be able to get my own Vette in no time!"

    Maybe later I'll start the list myself.


    [This Message was Edited on 01/28/2007]
  7. kjfms

    kjfms Member

    Hi dncnfngrs -- Yeah, all he needs is a lollipop...LOL Actually I have been thinking about a letter or two or five. Oh yes I will leave out the smart remarks of course...LOL

    Actually this physician volunteers at the clinic once a month so I am not real sure how that works but I still think a letter is in order. I hope you are doing OK and haven't been in too much pain. How is everything? Thanks for all the good wishes :)

    Hi mejlee -- Thank you so much and I couldn't agree with you more. I feel he was very lucky that I am on Lexapro which has a calming effect on me...LOL Yes some endocrinologists and neurologist run a close race for the most pompous ass award don't they? I am praying the neurosurgeon will not be in this competition.

    Hi Shalala -- So sorry you have an adrenal tumor. Why is it these physicians always insist on going with the "rarely grow aggressively" I wounder? If I had not called and insisted, pleaded, and basically begged for another MRI in December they would never had known the aggressive rate mine is actually grow and every one know pituitary tumors normally grow slow.

    Of course I always have to different and march to a different beat -- don't ya know.

    How is everything with you tumor -- I do hope all is well. Thank you so much for the kind words and the well wishes I am very grateful.

    Hi Karen -- I love you idea of interviewing physicians and starting the website sign me up!!!

    We should also bill them for when we have to wait for hours and hours as if our time isn't important. That is one good thing about my D.O. she asks that you arrive 15 minutes early for any paper work and she never runs late except for emergencies -- I have never seen this before and still can't believe it!! Thank you for being here for me :)

    Hi fight -- How are you doing? I have been so wrapped up in my own problems I have been very rude and haven't checked in here much. Actually everything has been in kind of a haze if that makes any sense.

    You are right this physician is great with the thyroid but I don't think he has experience with pituitary tumors but I wish he would have just told me so. As always thanks for being you and (((((hugs))))) back at ya!!!!

    Thanks again to all,

    Karen :)
  8. bigmama2

    bigmama2 New Member

    I loved your rant !!!! (but sorry about the circumstances of it)

    I' ve seen drs. for 12 YEARS now due to my unrelenting fatigue, had tons of tests and was repeatedly told it was just depresion and or fatness. Not ONE of them ever suggested CFS. I finally went to a cfs specialist (Philly FFC) who ran the right tests and lo and behold -lots of abnormal results and I am finally getting somewhere in the last few months.

    Jerk-offs!!!! I too will be writing lots of letters to my former docs.
  9. hugs4evry1

    hugs4evry1 New Member

    You can vent any time you like, but please.....you're NOT ignorant. You're sick and doing the best that you can do each and every day.

    I agree, the doc sounds like a moron, and I don't know why he didn't send this to another with more special knowledge before this. He sounds like he's in over his head at this point.

    I wish you well, calming thoughts....warm wishes and hugs going your way.

    Nancy B
  10. pam_d

    pam_d New Member

    I am so sorry you have to go through this grief! I had cancer this past year, Leukemia, and I can't imagine a doctor saying to me, "Well, let's just watch it..." or "I don't know what to do about it..."---I'd be dead by now! A growing tumor, especially a fast-growing tumor, as you've described it, is nothing to just watch & wait about...

    I can't offer any words of wisdom, just that it's disgraceful that you can't get this resolved! Of course it's linked to your symptoms. Please ask at your clinic for a different endocrinologist, and to hell with the old one who has no answers for you! Doctor's offices are used to someone who isn't happy with a certain doctor asking for a different one, they take it in stride---you have every right to want to find a doctor who says more to you than just "I don't know what to do."

    Please keep us posted...when I get a chance this weekend (I'm sorry, I work fulltime, but DO have more time on the weekends) I'm going to research foundation money---when I first found out about my cancer, I checked them out---they pay a lot of costs of care (except, as it happens, for my Leukemia since it's SO expensive!) but I was amazed at the whole host of other illnesses and diseases that there was foundation money available for, for folks who need it. I will try to find those websites for you, it's worth at least checking it out. I will try to get back to you!


  11. NashCag

    NashCag New Member

    How awful.

    I was wondering, could you go to the E.R, and describe what's going on. Leave out the bad Doc visit part, you know how sensitive Doctors can be.
    But maybe they would do all the tests right there, and you wouldn't have to wait.
    What do you think? I just don't think you should wait on this.

    keep us posted,
  12. kjfms

    kjfms Member

    Thank you all so much for your show of support and your good wishes as well as your prayers they mean so much in my time of need.

    I really apologize for not getting back sooner but I been trying to find out just what is going on.

    I am now being told the neurosurgeon cannot see me until August 2, 2007 well I really fear I may very well be blind by then. I am not kidding here and I am very afraid.

    Apparently the surgeon hasn't been shown my film and seen the growth rate of this pituitary for himself. I am in the middle of trying to get in contact with him and see if he will take a look at them and hopefully bump me up when he sees the growth rate -- wish me luck I am going to need it.

    I have check the surgeon out and he is very impressive. Pituitary Tumors is one of his specialities unlike the endocrinologist.

    He will be able to view all of my films on the EMR at the hospital where I use to work. So I am going to get in touch with some people I used to work with and see if anyone has any thoughts or ideas -- it couldn't hurt right?

    I am seeing my D.O. tomorrow for some sort of shot to help my neck and back and to see if she will write me a letter to apply for a medical card from the state. I do not like to do this but I have worked all of my life and paid my taxes and this is why I did worked isn't it?

    I am at the point where FMS and the pituitary tumor are really interfering with my job. I was told yesterday that I needed to speed up -- well I am doing the best I can do and I do not know what else to do.

    Thank you all again from the bottom of my heart. I will write again soon.

    Well I got to go to bed I am see double -- again...sigh and very tired.

    With much love and appreciation,

    Karen :)
  13. kjfms

    kjfms Member

    You are so sweet for asking I am hanging in there. I just posted a Health Update thread to tell everyone what is going on pretty odd stuff...

    Thank you so much for the pray post. I should have thanked you long ago but forgot please forgive the oversight.

    BTW the prayer are working things are looking better as far as the neurosurgeon goes :)

    Take care,

    Karen :)

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