pituitary tumor, anyone???

Discussion in 'Fibromyalgia Main Forum' started by summerskye, Mar 23, 2005.

  1. summerskye

    summerskye New Member

    I did poorly on a visual accuity [sp?] test at the eye dr and am being referred to a specialist for further investigation. Possible outcomes mentioned are either optic neuritis - which can be associated with Lymes - or a pituitary tumor pressing on the optic nerve. Over the past three years, my field of vision has diminished in the left eye - beginning as a "small defect" and progressively worsening... although I don't actually notice this change. Optic neuritis can also be due to a pituitary tumor - which, according to my internet research, is not all that uncommon. Aprox. 22% of the population may be affected - the good news is that the vast majority of cases are entirely benign. However, associated symptoms besides vision include things like: irregular or ceasing of menses [women], possibly nipple discharge/milk, cold intollerance, fatigue, aches, osteo-arthritis, headaches, bruising - and a host of other symptoms many of us here seem to experience. Aside from headaches, I have most symptoms that raise red flags.

    I see the specialist next week - but am already becomming stressed. Sometimes, if the tumors are not very large or entangled, they are removed via surgery. Sometimes after surgery they return. Other treatments involve various drugs. Sometimes, the tumor can grow into the sinuses. It is frightening. None of it is anything I wish to go through.

    Has anyone else experienced a diagnosis of pituitary tumor? Has anyone's doctor checked them for this condition? Have others found that their FM or CFS symptoms actually turned out to be a pituitary tumor?

  2. magic

    magic New Member

    I had a friend who had a pituitary tumor removed at sheffield hospital,U.K.some years ago They operated up through her nose,no visable scars, and she was back at work quite quickly.She is still well with no further problems.Hope this helps.
  3. darude

    darude New Member

    have all of this and mentioned it few years ago but docs never did anything!
  4. TXFMmom

    TXFMmom New Member

    It appears that I had a pituitary adenoma, not malignant, but they are space occupying, and in my case, it apparently sent out fingers into the ant. pituitary gland and when it outgrew its' blood supply and infarcted and died, it took part of my anterior pituitary with it.

    I now have the human growth level of a 104 year old and am hypthyroid, but cannot take the HGM because of a previous melanoma.

    One can develop visual problems with a pituitary tumor so have it checked out.

    Many of the problems which appear with FM are symptomatic of a pituitary-hypophyseal-adrenal malfunction.
  5. summerskye

    summerskye New Member

    Thanks... it makes me feel a bit better to know that I'm not alone.

    My [paternal] grandma was blind in one eye. I asked her how it happened and she said she didn't know. That she just went blind while she was in her 30s. She passed away at 74 from heart problems. I am wondering if she may have had a pituitary tumor that caused her to loose her eyesight in one eye - but beyond that, she lived a long and full life.

  6. summerskye

    summerskye New Member

    Last summer they did a full blood work up on me. Everything came back normal - including my hormone levels. However, at the time, I was on birth control pills - and had been for three years in an effort to control heavy periods [I'm 45, now]. I'm wondering if by being on birth control - Ortho Lo - if that may have caused my hormone levels to look normal when they might not have been? Also, I stopped taking the BC pills in December. Had a period two weeks later and nothing since. I'm hoping that I may have just entered menopause... is 45 too early for that???
  7. darude

    darude New Member

  8. kjfms

    kjfms Member

    Thank you,

  9. Sheila1366

    Sheila1366 New Member

    We are waiting to hear from surgeon on surgical date to remove tumor.Hopefully next week.I sure hope that you don't have a pit. tumor.But here is some info that can help you.

    Pituitary tumors can be very small.Hard to see on an MRI.As a matter of fact 40% of MRI's will not show the tumor.

    Diagnosing a pit. tumor can take awhile.

    Many tests are needed to be done.24 hour urine test,blood test,a dex test,sometimes an IPSS test where a cathater is inserted into the groin area on both side and the cathater will travel up to the inferior petrosal sinuses which is very close to the pituitary.Blood would be drawn at different times and the ACTH levels will be checked as well as the cortisol levels.

    ACTH levels and cortisol levels are the main levels checked for pit. tumor.Sometimes the tumor can be on the kidneys and they are called adrenal tumors and there are those that are called eptopic tumors that are mostly located in the lungs.

    These are some of the symptoms for Cushing's:
    1. a round face(moonface)
    2.unexplained weight gain
    3.deep purple stretch marks mainly on stomach,hips,thighs,breasts and under arms.
    4.mood swings,depression
    5.stopped periods
    6.red face
    8.a hump back(called buffalo hump,fat settles in the back causing a hump)
    10.can cause severe depression and psychosis in severe cases
    11.thinning hair
    12.cognitive impairment

    I know there is more but those are the main ones I could think of and the ones my daughter has been exsperincing.

    I don't mean to scare you but this should be taken seriously and it can take a very long time to get a diagnoses.The sooner you start getting tested the better off you will be.

    I know of alot of people that have had successful surgeries and the tumor has not come back.There is a 15% chance that tumors can come back.

    If you want more info. email me.I have tons of info. on Cushing's Disease.(Cushing's Syndrome is a diagnoses without finding the tumor,disease is a tumor for sure incase you wondered)


    If there is any question of a pituitary tumor you must see an endocronologist.
  10. summerskye

    summerskye New Member

    for all of the info and comments. I went to an ophthalmologist who did all sorts of testing. He said that I was fine. He looked at my file the other eye dr sent over and the ophthalmologist said the visual accuity tests did not show a problem with me - but with the eye doctor's equipment as what appeared to be an area where I couldn't see in one year, I could in the test the following year! I was grateful that I had gone to the ophthalmologist, but furious with the original eye doctor for putting me through all of the worry - not to mention expense.
  11. wangotango

    wangotango New Member

    a pituitary macroadenoma that is in the back of the gland and growing up. no one will do surgery on it, so i will see what happens ? bill m in mo
  12. darude

    darude New Member

    This is an OLD post!!!!!!!!!!!!! Anyway I have a 7mm pituitary mass in the central portion of pituitary. Hoping to have surgery this fall.
  13. kjfms

    kjfms Member

    it appears to be a tricky one is playing havoc with my body at the moment and I have been pretty ill because of it. While the majority are nonmalignant I will not know until I have surgery and I have no idea at this point when that will be.

    My seems to be messing up my already screwed thyroid gland and I have stopped sweating. I am very tired more so than with the FMS fatigue. Growth hormone is nonexistent and cortisol level is on the high side of normal.

    Aaaaarrrrrrggggghhhhhhh I am just so tired of it all!

    summerskye- I wish you the best of luck. Did you have an MRI?

    Shelia- Sorry you daughter is going through this. I hope every will be OK for her. My pituitary showed first on a CT scan at only 5mm and then showed on MRI. You sound like me you have done a lot of research and good for you. Your daughter is lucky to have you in her corner.

    Bill- You have got a difficult one don't you? So sorry. Do you have a lot of symptoms?

    darude- Best of luck on your surgery and please keep me posted. How are your symptoms? What type is yours?



    [This Message was Edited on 08/14/2006]
  14. darude

    darude New Member

    They really DON't know what it is. Adenoma or proteinaceous cyst. Its it middle and not sure if functioning yet more tests. Only way to find out is have it removed and biopsied.
  15. summerskye

    summerskye New Member

    to see so many with pituitary tumors. I will say a prayer for you all.
  16. kjfms

    kjfms Member


    Good luck.


    Thank you.
  17. deliarose

    deliarose New Member

    have u seen the study out of Loyola Uni that found a link between CFS and cancer and heart disease?