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crystal63090
crystal63090

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

  • Tori88
    Tori88 crystal63090

    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?

    • courtnay26
      courtnay26 Tori88

      Posted

      I think Tori gave good advice

      I would get an mri scan

      So the doctors can know

      What is going on

  • crystal63090
    crystal63090

    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) 
  • esc4p3
    esc4p3 crystal63090

    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.

  • Tori88
    Tori88 crystal63090

    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!

  • kim22986
    kim22986 crystal63090

    Posted

    Hi there 

    What kind of pain? And have you been diagnosed with Hashimotos? Thyroid? Or pituitary Tumour ? 

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