WOW Could be Pit Tumor...ACROMEGALY??

Discussion in 'Fibromyalgia Main Forum' started by Hope4Sofia, Feb 3, 2007.

  1. Hope4Sofia

    Hope4Sofia New Member

    Hi all,

    I went to my endo yesterday to review recent tests.

    DHEA low (again) - she starte me on DHEA replacement
    Insulin resistance again
    low testosterone (dhea might help)

    She started me on Florinef to boost my BP.

    HERE'S the kicker! My Growth hormone was HIGH!

    I asked her what this could me she said pituitary tumor but my IGF-1 was normal.??

    Not just any pit tumor....ACROMEGALY. Ever heard of it? It's what president Lincoln had that made him so bony and big!

    I'm not deformed. But I have been complaining of terrible pain in my hands, feet, and face - including terrible cluster headaches.

    What do you think? Have you ever known anyone with this or tested for this? I suddenly feel very alone - like it's me and the elephant man.

    Sofi
  2. NICUnurseang

    NICUnurseang New Member

    The last time i went to the endo my GH was also high. He really didn't give me any reason for it being high but he didn't seem concerned about it. Basically his explanation was it will come down if you lose weight, which I'm not sure about because I've not found anything to back that up. I do know that GH does effect metabolism and glucose uptake so it could be related to the insulin resistance (which I also have too). However, GH fluctuates widely throughout the day because it is secreted by your pituitary gland so one high level is ok and does not necessarily indicate a problem. Elevated IGF-1 levels almost always indicate acromegaly so if yours was OK then you're probably ok in that department. I'm not sure about the pituitary tumor part but I don't think you're going to become the next elephant woman. Hope that makes you feel better :)
  3. kjfms

    kjfms Member

    Hugs sweetie I certainly understand the feeling. I have a pituitary tumor but mine is different than yours. I am the one Wakemeup mention. My tumor has more than doubled in 11 months and I will be seeing the neurosurgeon on Thursday the 8th -- anyway.

    Please do not let anyone tell you that this is nothing. Pituitary Tumors are more serious than most people realize. I hope you are seeing a specialist for this.

    There is outdated information about pituitary tumors and yes this includes some of the medical community I am sorry to say.

    There is also some outdated views on acromegaly. Many acromegalics look normal and show no signs of acromegaly only those who go undiagnosed for so very long are deformed and their faces sadly brand them as acromegalics.

    It makes one wonder how many people have been treated for high GH levels, bilateral carpal tunnel, excessive tongue sizes, heart problems, and even sleep apnea before a pituitary tumor is finally found and treated for acromegaly.

    If you feel something is not right do not give up and do not take no for an answer. If I had not called the clinic and begged and pleaded with them to do another MRI we would not know my tumor is aggressive.

    Most pituitary adenomas are slow growing and the majority of physician assume, unfortunately, (IMHO) that most patients are text book examples when the simple fact is each patient is different.

    Pituitary Network Association is a great site to get up to date information I use it among other sites. Read as much as you can.

    Educate yourself this is one of the most important things. You can find a lot of information of Brain tumor sites like the American Brain Tumor Association, or the National Brain Tumor Association.

    As I have come to learn and to paraphrase a quote:

    I do not have a rare disease. It is rarely diagnosed. There is a difference.

    Best of luck and if there is anything I can do please let me know. I am pretty good at finding information -- on my good days...LOL

    Please take care,

    Karen :)



    [This Message was Edited on 02/06/2007]
  4. Hope4Sofia

    Hope4Sofia New Member

    Thank you so much for your reply. It really encouraged me. I feel intimidated by the Dr's when I push the issue, but like you said, I KNOW something is wrong.

    I have a lot of pain in my feet, hands and back. I have bad TMJ. I have had surgery to repair a deviated nasal septum 10 years ago and it's worse now then it was back then. My bite has changed.

    I just wish I could figure this out. I'll find out how the retest went in a few days. I guess I'll go from there.

    Thank you for reaching out to me. It means a lot.

    Sofi
  5. kjfms

    kjfms Member

    You are more than welcome. I believe in playing it forward -- I think that is the way to say it.

    Wakmeup, Darude, and so many others here have helped me so much with this entire PT thing I honestly don't know what I would have done without them.

    I tried a couple of PT boards and it just didn't feel right or work out. People didn't want to talk -- they just want to tell you what to do anyway didn't care for any of them.

    Best of luck with you test I will say a prayer for you,

    Karen :)