Endocrin system disaster

[shancashatt]

I was diagnosed with a pituitary tumor in 2001.  This was found when they were checking my thyroid which they radiated. I wish I could have my thyroid back but I cant so I just accept it and move on.  I have been on Cabergoline off and on for 12 yrs.  I don't tolerate the medicine.  I had surgery in 2009 my Prolactin count was 93.  I had the surgery and felt great for a little while, the tumor came back.  Presently I am seeing a endocrinologist at UNC Hospital.  My prolactin count is 150 so he really wants me to start the medicine and he is starting me out slowly.  He says I am not a candidate for surgery again because of the risk of brain damage.  I haven't had an MRI done since 2010 which at that time another endocrinologist said the tumor was growing towards my Carotid artery.  I had to switch endocrinologist because of insurance purposes.  I have a very good feeling about the new dr at UNC, but he hasn't scheduled an MRI. My question is do you think he should do a before an after MRI to see what the tumor is doing? I cant loose weight and I try very hard.  will this ever get better???  Thanks for your help

[Daniel M Prevedello, MD]

Dear Shancashatt,

As a neurosurgeon I would recommend a current MRI in order to investigate if there is any tumor progression. Some of the pituitary adenomas are not functional and there is no other way to investigate if they are growing other than with a MRI. The minimal increase in the level of prolactin may be caused by stalk effect by a non-functional adenoma. So, once again, I would recommend a pituitary MRI.

[rumpled]

I don't have adrenal glands any more. So when I feel nausea, it is a good sign that my sodium is dropping and that I need either more sodium and/or more hydrocortisone and in all cases, more fluids. It is dangerous for me to become dehydrated if the nausea progresses on to vomiting, so when I feel nausea, I act quickly to take salt etc. to get myself back on track.

[shancashatt]

The nausea seems to be in the morning when I wake up.  So what do you do to act on it quickly?  So frustrating because I am a morning person and this is not helping.  

[rumpled]

Pituitary tumors can and do cause nausea - it just depends on what hormones they effect. I for one know when I am ill when I get nausea and I have to act on it quickly.

It is also imperative that other hormones are checked to make sure nothing else is effected. I would also think that things like vitamin D and iron too as we are frequently low in those as well.

Weight is a struggle for many of us!

[shancashatt]

Thank you for your response. The specialist I am seeing was highly recommended. I hope he knows where the pituitary gland is located, that wouldn't be good.  I feel confident with him Like I said I switched because of insurance and I wasn't pleased with my last endo or Neuro. I have copies of all my test results and MRI reports all the way back to 2001.  I am waiting on a call from him now about another MRI. That is the highest my numbers have ever been.  I think my numbers were like in the low 80's when I had surgery in 2009.  I don't want to go thru another surgery but to feel good again I will in a heartbeat.  This is getting old.  Day to day not knowing how i'm going to feel, and working 2 jobs with no help, I live by myself. Some days are pretty rough but I get thru.  

He says the pituitary tumor wouldn't cause nausea but what I have read it can.  I am also very tired this week I just wanna close my eyes and go to sleep and this isn't like me at all.  

So I have started the Cabergoline and we shall see what happens.  I don't like the medicine but I will do whatever at this point to feel better and have energy, and loose some weight.  

Thanks again for your comment rumpled.

[rumpled]

I am so sorry that you are having issues.

I don't know why you are not a candidate for surgery so I hope the new doctor is more clear as the pituitary is not part of the brain but is located below it. So while your tumor is may be growing toward the artery-which can be serious - you really need to be on the medications to control the size.

It can be better but you have to work with your doctor, stay on the medications and ask about other options as there is another medication to take that may work better for you.

I would also get copies of all your tests and MRI reports so that you know more about what is going on. I would also push for a current MRI.