Looking for Answers

I have an active prolactinoma and adrenal insufficiency.  I am taking 10 mg tid of HC and cabergoline.  I am still suffering from fatigue, nasuea, low grade temp, high heart rate (but low bp) and constipation.  My endo says it is not an endo issue and my primary care doc quit.  I tested negative for aldosterone difficiency.  This has been going on for 6 months, is this normal for the condition or do I have another complication that has not been diagnosed?

[rumpled]

If you have low BP - what are your sodium and potassium readings? Are you taking florinef? Any testing on renin and aldosterone? Just aldosterone? Nausea is a sign that cortisol is too low - so it is not a good sign.

I would say your endo is not that good. Do you have a neuro-endo at a pituitary center? You should seek one of them out - as you should probably be getting more testing.

Your dose of HC is pretty low. What you are feeling is not normal - it sounds like you are under-treated. I take salt and florinef, and more cortef. There could be other issues - but you would need testing.

[aggie96]

Renin and aldosterone tested normal, which suprised me, because I thought that was a perfect fit. Endo is best in 200 mi. radius, but I have wondered if I need to go to a Mayo or something.  I do not live in a metro area, so there is definitely no pituatary center.

Thank you for your comments, sometimes I wonder if I am crazy or just in a bad dream.  I can't even find a good primary care dr. that will take me on, its too rare and complicated for them to want to deal with.  Thank goodness my cousin who is an allergist is atleast willing to help me figure it out and order testing!  I just found out my IGG (auto immune) is low and we sent off testing for Crohn's and other GI inflammatory disorders, along with scheduling a colonoscopy.  

What testing would you suggest?

[rumpled]

Glad you have at least one doc that is helping you out.

Not a doc - and it could be literally thousands of things IMHO... so hard to say!

Pit centers are at larger hospitals and universities so there may be one around. I travel pretty far myself.