Posted , 5 users are following.

Hi Everyone, 

I am new to this group. Just a background on me I am 31 and I have been dealing with this for 4 years now. I was on a lot of medicine for my tumor but I told all 7 of doctors I wanted off of all of them and I took a more naturally way for about 2 years, but it did not help. I am going to a new doctor in about a month and I am not sure what they outcome will be, but i can tell something is off, I am waking up in serious pain and it just keeps getting worst, kind of worried


0 likes, 9 replies


9 Replies

  • Posted

    Where is the pain located? If it is severe and you have a known mass, I would go to an ER asap. I'm so sorry you are having pain sad

    Also do you know what hormones your tumor was altering previously, if any at all?

    Report Reply
  • Posted

    My doctor told me that I have Crushing Disease (he said that was the form of tumor I have).  The pain is located mainly in the middle of my head (where it normally is) 
    Report Reply
  • Posted

    Definitely worth updating your doctor about the pain. If you have a tumour that is making your pituitary gland produce too much ACTH, which in turn tells your adrenal glands to produce too much Cortisol, then you need to get something done. It may be the tumour has grown significantly hence the pain. They may have trouble removing it because it is in a tricky place, in which case radiotherapy may be an option to shrink the tumour. In extreme cases they may remove the adrenal glands, which stops the excess Cortisol, but doesn't address the cause/tumour. Definately get seen by the doctor. The Pituitary Foundation website is good for advice, they have a helpline (in the UK). Cheers, hope you get sorted soon, Carl.

    Report Reply
  • Posted

    Okie, so your tumor is causing cushings, or "too many steroids." Cushings can cause alot of uncomfortable symptoms, and I completely understand the frustration with medical treatments and medication regimens. But cushings can cause diabetes, hypertension, hypokalemia (low potassium), and a suppressed immune system, all of which can be very serious! And therr are pleanty of other symptoms that can really effect your daily life too sad I think it's great you are taking initiative and seeing a doctor again to check up on what's going on.

    I really do think seeing a doctor (whether it's in the ER, or if you call the doctors office and tell them you need to see them asap, rather than in a month) right away is a good idea!

    I really hope everything works out for you, and maybe getting a second opinion about a possible surgery would be benificial as well! I hope you feel better!

    Report Reply

Join this discussion or start a new one?

New discussion Reply

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up