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]

In terms of the pit gland they might be right? It.s good that u r getting this other scan. Hopefully it will shed some light on what is happening. A good friend of mine just had a ruptured cyst along with tumor markers too. She is still in a diagnostic stage for this but her docs are saying the cyst is the cause.
the pancreas makes hormones that you need to process food. sometimes those enzymes and such can be replaced.  Has ur doc connected the pancreas to ur low weight?
sending a hug
horselip

[Cheryl1010]

Hi All. It's been a while and now  they are testing me for ovarian cancer. The multiple cysts that were found on my ovaries now have tumor markers. My breasts ate still making cysts and septations and milk. I'm still losing weight 87 lbs now. They are saying this pit tumor is not doing this. My reproductive endo thought I had a big big prolactin tumor which was why he put me on calborgene but there was no change and It made me very sick. So now they are saying non secreting tumor that isn't doing this stuff at all. My gi doc sent me for an MRI of my abdomen yesterday to check for other causes of the nausea no appetite and weight loss. I had extensive blood tests and some pancreatic issues showed up indicating function of the organ itself. Anything any thoughts at all?

[horselip]

Thanks for the update. You've come a long way in just this last month.
It sounds like you have decent doctors now and that is key! Keep plowing forward and keep your head up. Being undaignosed is the worst part i think. You are truly a medical mystery. Someone should do a TV show about your case so you can make some big bucks ha ha
Sending you a virtual hug from Hawaii-
Horselip

[rumpled]

One can be rather complex... I had PCOS and lot of female issues with my pituitary issues, and it made my hormonal panels come up stranger than my other pituitary buddies.

Re Cushing's syndrome vs disease - the *overall* is called syndrome no matter the source, and disease is reserved, or should be, for only pituitary sourced hypercortisolism. So a 24 hour urine test will tell the doctor that high cortisol is present, but will not give an indication of source. Source testing should also be done - that can be ACTH, adrenal testing, dex suppression (which is a good source test, not a good exclusion test), and of course imaging - and none of the tests are perfect...

I never had kids, but from my own lacation, I know the milk can differ in color and texture (ewwwww!) so.... not sure why that can knock out a prolactinoma, but they tried that with me too and they were wrong - but it took 12 years to prove it...

All the testing is no fun anyway.... keep at it.

[Cheryl1010]

Hi guys havent been on in a while bc I'm still in this diagnosis process. Good news is that I have two great drs. One endo and one reproductive endo. My tests for these rare endo diseases are not all back yet but my CBC  was not sO great   I had low red cell count and high white cells , potassium was low sodium was low and calcium was elevated. Had an ultrasound  of ovary and ovary has failed but has alot of cysts. He was looking for a specific tumor that secrets lh bc of my lh level and FSH. I have the reversal so clinically I have pcos but not really as u all know what these tumors can say. Theory was that possibly have big big prolactin issue but shot down bc a prolactin tumor doesn't do the rest of this stuff. So now I'm waiting for rest of results and going for a MRI of my abdomen to look for tumors or hyperplasia on pancreas or ovary.  I'm also doing a 24 hr urine catch to check cushings syndrome which differed from cushings disease or something like that ?  Breast discharge is very mucosy rather than milky so that's another concern the doc in ny has. She is now gearing toward this lh glycoprotein tumor pending the test of these rare disease tests and mri So  I'm still in the rule out process.  

[rumpled]

Men-1 is a genetic disorder - so they should run a DNA test. BTW there are many different types of MEN (I call mine MEN-JEN as a joke - I don't have MEN but I have a lot of tumors and my name is Jennifer) and sub-types so even if you test negative, you may have another type or sub-type and the test is expensive so they may not want to cover all the testing.

Even if it is *secondary growth*, it still should be treated and you have to look at family members for others with similar issues. Any parathyroid or calcium issues?

I would still think though... even though it is MEN - that the pituitary is causing the issues... strange!