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]

Yes had different tests done in Columbia. Last two were low.

[rumpled]

You should have to go on it for the tests, not for weight reasons... that is a bit odd to me. Are your tests showing you are low? Did you have a stim test?

Yeah, weaning was the worst!!!

[Cheryl1010]

I was on it after surgery and then off it. Now I need to go back on. Weight loss is too rapid she said. I did great on it but coming off was not fun. I still lactated post surgey for about a month but now nothing at all. I'm a happy girl.

[rumpled]

I am so glad that you were persistent! I know a lot of people that had supposedly normal scans and when a surgeon read them the doc found a tumor.

I hope the hydrocortisone is temporary as your pituitary recovers - it is standard after the surgery. Sorry - but the wean is not fun. You may have to be on other meds with pit damage. I am panhypopit so I replace a lot myself.

[Cheryl1010]

Hi guys
It's been a while since I've been on. Well, I had this tumor removed on April 9! My health was severely declining and I reached out to a top surgeon in NYC mt sinei. I emailed him my history and Within two hours I was at his office. He was appalled that no one referred me to a surgeon and after looking at my original MRI from 4 years ago that was supposedly negative, the tumor was there the entire time, it was not only 6 months old. He saw shadowing fluid and the tumor was much larger than the report said. In 3 days I was in getting this out! When I woke up I had no headache at all! ( alot of pain in my face and I looked like I was hit by a bus) but no headache! I ended up having a rare tumor and it took a lot of pathology to figure out what it was. It was rock hard and had a weird pattern. Post surgery he questioned whether it was an adenoma at all. It was posterior and connected to the menengies and difficult to remove. But it's gone and I'm a new girl! It ended up staining positive for for gh and prolactin as well. It had 3 points of hemmorage which did damage my pit gland. But I'm dealing with that fine. Cortisone and steroids are next.

I'm also now in a study for this in Columbia medical in NYC   The doctor is amazing.
If anyone is as desperate as I was , I reccomend highly. Dr Post is my angel.

[rumpled]

I find it just a little weird that they think the pituitary is not related when a lot of your symptoms still seem... pituitary... plus MEN-x is a endocrine aka pituitary disease so... that kinda baffles me a bit.

There are other forums here for some cancers which you may have to branch out to as I don't know if we can help cover all your concerns - but we do want you to keep us updated on what is going on with your ovaries etc. It is very worrying that you have lost so much weight and they have not pinpointed the cause of the issues. Please take care.