Multiple Endocrine Neoplasia Support Group

Hi, everyone. I was just diagnosed in Feb. with pancreatic neuroendocrine tumors and will be having surgery on April 9th to remove the body and tail of my pancreas. I will be having genetic testing done for MEN-1 since no one else in my family has had this. My history is parathyroidectomies in 1982,1989, and 1998. My calcium has been good since the last one, but in December they discovered my prolactin level was high and had an MRI which showed a pituitary adenoma. I'm now on cabergoline to bring the prolactin down. At the same time I was having diarrhea and that's when they found 5 pancreatic islet cell tumors, which means they are malignant. I had had them biopsied during an endoscopic ultrasound. They are gastrinomas, which were causing the diarrhea. I'm having surgery at Fox Chase Cancer Center in Philadelphia, PA. All my doctors except my endocrinologist think I have MEN1. They'll have to try to convince her since she's one of the docs that'll be following me! Has anyone else had the "PPP's" (parathyroid, pituitary, and pancreas)?

Hi I am new and my name is Kathie I am also new to the group as of today and have so many questions to ask. I am still waiting to get diagnosed to find the right doctor. I have this constant diarrhea and never heard of GASTRINOMAS but believe I could have them. In 2005 I was told I had a pitutary adenoma and each year after watched nothing grew and then this year was told it was a cyst one year I was told it was gone so after five years I am not sure what is in my head. I also have alot of adrenal problems I believe they are but because I am on steriods they can't test me for them. I do know I have thyroid problems I have Hashimotos and something new is coming up where my free T3 is over the range. I had 3 seizures in february 2010 and looked back on that bloodwork and what keeps coming to me is the elevated Free T3 which would mean hyperthyroid and I have alot of symptoms of hypothyroid but strangely I have the antibody to Hashimotos so this is confusing someone recently told me it was T3 Toxcisis which is rare the more I think of all these things the more I think it is MENS what type I am not sure. Our family does not speak and someone told me last night that they thought my brother had MENS 2A he does not live in state nor speak to the family so he is not much help. My siblings are sick alot no one has ever been diagnosed. My mom had alot of the symptoms of MENS but died 5 years ago undiagnosed. I feel strongly I need to get diagnosed. My calcium levels are going all over the place and I had recently had a high Calcium PTH on my bloodwork. I also have extremely low vitamin D so at this point I can have any type of MENS I really need help from this board to find a doctor and get going on all this. God bless you and know you are in my prayers. Kathie

Hi, Kathie,

My name is Kim and I have had some of the issues you have had. I have had 3 parathyroidectomies, I have an adenoma on my pituitary and I had about 10 gastrinomas for which I had part of my pancreas removed 3 weeks ago. First, you need to be seeing an endocrinologist if you are not. He or she should send you for either a CT scan or MRI of your abdomen and also your head to check the pituitary. Have you had any testing done for gastrin levels in your blood. You have so much going on that you really need a good endocrinologist. I hope this helps you.

Kim

Also, Kathie, I had diarrhea and it was caused by the gastrinomas.

Kim

Hi Kim and Kathie,

To answer your question Kim I do have all 3 p's affected by MEN1. I have had two parathyroid surgeries now and was diagnosed 2 years ago. I have not had surgery on the pancreas or pituitary, but get regular MRI's to watch them if they are growing and get bloodwork to check for any changes in my hormone levels. And to Kathie, I would definitely agree with Linda and Kim that you will need to find an Endo that specializes in MENS. I'm not sure what region of the country you are from, but I live in NH and my endo is at Dartmouth, he is a great doctor and treats both my father and I. I don't know if there is anyway to search for a specialist but good luck and I hope everything gets resolved for both of you!

I had 3 of my parathyroid glands remove. Also a part of my pancreas were removed. Now, there's more growths (?, don't know the correct word for it). Don't know whether i should remove the whole pancreas.

Not much to say on this but I also have had the "PPP" and I am only 17 at this time. I was first dxed when I had to go in to get a pancreatic tumor (along with a few organs) removed the summer of 2011 and we had all kinds of things being "thrown at us" and I went through a bunch of stuff before being told. I also had a NEGATIVE blood test BUT that's because my gene is totally deleted not just mutated.