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]

Went to Cornell yesterday. They confirmed that this tumor is not the cause of this. How she explained it made sense. They are still not giving up though like the other doc. They are testing me for a disease called men-1. Especially bc of the pancreatic metaplasia. They think that this tumor is a secondary  growth  just like the others.

Not sure how to take this but at least they are trying.

[horselip]

Oh good, it sounds like you have some docs on your side and support from a dear friend. That is great.

I didn't know that you were on bromo. so yes, that would push the prolactin down more. Combine that with the low Thyroid and sex hormones and you might very well be hypopit from this cyst/adenoma thing.

Sounds like you have regrouped and set up another plan. Excellent. Nice to have some docs on your side. And to be told that you are "interesting" to boot, what a compliment :)
Horselip

[rumpled]

I had the PCOS and Cushing's and prolactinoma combo... it was ... not nice...

I hope the doctor can help you.

[Cheryl1010]

Ok guys so- I went today to my ob because he wanted to tell me to get a different endo. He read her report and consulted with a  reproductive endo and my hormones are not normal at all. My FSH and LH are high and being that other numbers indicate that I don't ovulate at all, absolutely no ovulation taking place in the one ovary I have its clear to see these hormones ate abnormal .  My TSH and my t free 4 were abnormal and my sugar is high. SO now today I was diagnosed with poly cystic ovarian syndrome with no uterus and one ovary that doesn't ovulate therefore he said this tumor is a secreting tumor and he said my prolactin was taken when I was on bromocriptine and the numbers still went up 6 points . Sooo in the meantime I got a phone call from my friend that has been helping me and I'm going into Cornell Wiell in NYC tomorrow ! Apparently I am a very interesting case - I'm going to see her take on my case and I'm also going to see this reproductive endo that my ob consulted with. He too told my ob this case is very interesting and he would like to take me on as a patient. I figured it can't hurt.  We r still trying to locate my cortisol  blood work nc he didn't get that copy either. I know it was ordered. Oh and the pancreatic metaplasia plays into the hormones too.
Thanks for all the support

[Cheryl1010]

Ok guys so- I went today to my ob because he wanted to tell me to get a different endo. He read her report and consulted with a  reproductive endo and my hormones are not normal at all. My FSH and LH are high and being that other numbers indicate that I don't ovulate at all, absolutely no ovulation taking place in the one ovary I have its clear to see these hormones ate abnormal .  My TSH and my t free 4 were abnormal and my sugar is high. SO now today I was diagnosed with poly cystic ovarian syndrome with no uterus and one ovary that doesn't ovulate therefore he said this tumor is a secreting tumor and he said my prolactin was taken when I was on bromocriptine and the numbers still went up 6 points . Sooo in the meantime I got a phone call from my friend that has been helping me and I'm going into Cornell Wiell in NYC tomorrow ! Apparently I am a very interesting case - I'm going to see her take on my case and I'm also going to see this reproductive endo that my ob consulted with. He too told my ob this case is very interesting and he would like to take me on as a patient. I figured it can't hurt.  We r still trying to locate my cortisol  blood work nc he didn't get that copy either. I know it was ordered. Oh and the pancreatic metaplasia plays into the hormones too.
Thanks for all the support

[horselip]

The Sex hormone ranges depend on what stage of your cycle you are in. I don't think you even cycle??? so don't know how to interpret given that.

The IGF looks ok, so you are probably not running high on that one. I was more worried that one might be high for you...because of the "growths"

The ones that I am more curious about now, are your thyroid labs and cortisol as they "could" be more linked to the symptoms that you have.

Move on, get another doc.
Sending a virtual hug
Horselip