Desperate for advise from someone who knows!

[Cheryl1010]

I was diagnosed with a 5mm pitituary tumor. I went to a nuero endo Monday and now she is doing blood work to test my hormones. My gyno told me that my prolactin was high but she said no and didn't agree. In 3 years I suffer with a debiliting headache Every day ,had an ablasion that tissue grew back from in two weeks which led to a hysterectomy. Always had ovarian cysts that got worse in last few years. Now I am loaded with breast cysts all kinds are septated with rapid tissue growth . I am leaking as well. I have rare supra ventical tachsrdia in which my heart operates 44 percent of the day at a rate of 140 to 160 beats per minute. I also have tissue growth in the esophagus that was just biopsies as well. This doctor that I saw told me that she doesn't know if any of this is related. I can't see that bc no matter what hormone they gave me in the past or med for my heart my body rejected it. I am feeling hopeless. She told me the tumor isn't big enough to cause a headache though. Please help. I don't know what to do  

[Cheryl1010]

These are my labs
IGF- 1    210 ng/ml.        
Growth hormone serum
2.5.                                  
LH
14.0
FSH
4.6
Prolactin
22.2

Confusing to me bc they give u all these phases for the lh and FSH. Also my prolactin was 14.3 the last test so it went up definitely. I don't see the cortosol on here though?

                                          
                                
              

[rumpled]

Get another doctor - a year when you are lactating (as may not know, it can be other hormonal issues from thyroid on up that can cause it) so you need to at least get to the bottom on that - it is super painful. Been there, done that.

I also have not heard of some of the things you have - but when you are that complex, you need another doc. I know I was out of the box too - and it took me a while to find the right set of docs.

[horselip]

Oh geez that *****

Get copies of those labs. And look at them yourself. Esp the ones that we've pointed out to you. You might be on the edge of the reference range or even off. You've got to just see them for yourself before you come to any conclusions.

Regardless, this doctor is not the right match as you've figured out. Check her off the list and move on. Make a voodoo doll and put her picture on it first and burn it, if that makes you feel better :)

Your situation sounds very complex with everything that is going on. This pit tumor may not be "the answer" to all of your woes. But I know there are endos who say headaches can't be caused by pit tumors.....luckily mine is not on that side of the fence.

You are clearly not processing hormones properly. What the answer is? I don't know. But the way that you handled that cortisol shot above is not "normal"

Glad that your friend is helping you,  this is good!!

I don't know what pancreatic metaplasia is but blood glucose probs might be associated with that it could also be a clue as to why you did well on that shot of cortisol?

Horselip

[Cheryl1010]

The injection of cortosol was to see my body's response to how it processes it.  But bc my hr was so abnormally high they had to be careful bc the injection causes it to go higher. Mine normalized.

[Cheryl1010]

So I had a terrible day. The doctor called me and said my hormones were normal and to come back in a year!!!!!!!!!!! I told her that I consulted with a neuro radiologist thanks to a dear friend that runs a center in NYC and he said that this tumor is doing something or else I wouldn't be a lactating! And asked her the possiblily about a non secretory tumor causing this. She told me no!  So now my friend is getting me in with a good doc in NYC. I can't believe that a doctor would look at a  a patient with  a heart condition, pancreatic metaplasia, a briad 3 Mamogram with 27 complex septated cysts that is leaking milk, female issues that let me to have a single ovary left after 3 surgeries, elevated on and off glucose levels, and a 4 year headache , then find a tumor in my pit and say its not the cause !  I've been a mental mess all day but seeing your feedback helps me know I'm not an insane hypochondriac.  

[Cheryl1010]

So I had a terrible day. The doctor called me and said my hormones were normal and to come back in a year!!!!!!!!!!! I told her that I consulted with a neuro radiologist thanks to a dear friend that runs a center in NYC and he said that this tumor is doing something or else I wouldn't be a lactating! And asked her the possiblily about a non secretory tumor causing this. She told me no!  So now my friend is getting me in with a good doc in NYC. I can't believe that a doctor would look at a  a patient with  a heart condition, pancreatic metaplasia, a briad 3 Mamogram with 27 complex septated cysts that is leaking milk, female issues that let me to have a single ovary left after 3 surgeries, elevated on and off glucose levels, and a 4 year headache , then find a tumor in my pit and say its not the cause !  I've been a mental mess all day but seeing your feedback helps me know I'm not an insane hypochondriac.