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  

[horselip]

The endo is checking the right stuff, so that's good. When will you get the results?  Have you always been on the thin side or is this a change?
Yes, high prolactin sometimes causes weight gain but not always. A growth hormone secreter or ACTH secreter could cause some of your symptoms.  
Good luck with pain management.
Horselip

[Cheryl1010]

She told me hormones take about a week. So I'll expect her call in 2 weeks haha!  I had the bloodwork wednesday. Thank you so much for your communication. I have always been thin around 110. But not 90 lbs.

[rumpled]

Low cortisol - low ACTH causes weight loss and heart issues may come with that one due to the issues with sodium and potassium. Even if your tumor is not a secreter, it could be interfering with the secretion of other hormones and messing up other things. My tumor twin and another person I know routinely lost K and no reason was found - they would pass out. Some of us are really bizarre with medications too.

[Cheryl1010]

Back in February she tested me for a pheo On my adrenal glands bc of the heart and the weight loss. She injected me with cortisol and bc of my heart issue she had to do it in the hospital bc she said that cortisol injection raises your heart rate.  The ironic thing was that when they injected me with it my heart went from 125 Bpm down to 82. The doctor and the nurses were shocked at the opposite reaction. It was strange. But when when my tests came back negative for pheo I was basically dismissed.
I'm waiting for these blood tests and hope I have an answer.
Does a good dr realize that it can interfere with hormones even if it's a non secteter?

[rumpled]

Pheos and other tumors can secrete on cycles - so you may not have been high at the time. One test is not good enough - for ANY hormonal tumor. Get a copy of your tests - find another doctor please.

I have not heard of giving cortisol to raise a heart rate. It can but gee! I had high cortisol and a LOW BP so it does not have to happen - what can happen (per my cardiologist) is that your body cannot manage the change in fluid dynamics from the cortisol changes, and the BP drops.

The pituitary lesion is up there doing something - you have symptoms - you need the right neuro-endo to get to the bottom of it. It may take a few docs to find the right one!

[horselip]

Yes- a good neuro endo should also know that a non-secreter can affect your hormones. My Rathke's cleft cyst was already affecting my thyroid, female hormones and growth hormone, before it was removed.

So yes!!! A non-secreter can make certain pituitary hormones ones lower.

Rumpled brought up a very good point about cortisol. If it is low that could be behind the weight loss.  

I now have low cortisol because my pit gland does not work anymore. If I don't take my hydrocortisone pills I get very tired, have no appetite and my blood pressure goes low. Never given any thought to how it affect the heart rate though. My pressure always goes up right after I take my meds.

Throwing out a theory...maybe when they did that cortisol injection you were low in your levels of cortisol....and the injection restored you to homeostasis? Cause 82 is a healthy good rate while 125 is kind of high?

I don't know anything about pheos but it makes sense that they could be pulsitile in nature and require more than one test to catch!

Horselip