Anyone with Multiple Endocrine Neoplasia

Just wondering who has Multiple Endocrine Neoplasia out there. Feeling kinda lonely and don't hear this mentioned much.  I have had multiple Pituitary Tumors and now am presenting with a probable Thyroid Tumor.
-sass-

[rumpled]

I don't. I only know maybe one or two people with it. It is hard to get docs to test for it.
Having pituitary tumors and thyroid tumor is not MEN (I have that as well) as you have to have hyperparathyroidism and pancreas issues (I think tumors) as well. There are different forms. MEN-1 MEN-2 etc.

I joke that I have MEN-JEN (my name is Jennifer).

[SassySharon]

So what do you know about ACROMEGALY.  I am borderline high.  
  IGF 1,  ECL testing
233                  Reference Range 26-233
I have Very Large Hands and feet and now my rings do not fit and my shoe size has gotten bigger.  Feet have gotten larger over the years.  20 yrs or so ago I wore 7.5 now about 9-9.5 depending on the shoe. Last year I had bone start breaking off from inside my mouth around the lower ridge.  Painful!     Short Stature only 5'2" and shrinking, But heavy big boned.  RoundMoon face that used to be more heart shaped. And  Weight Gain. Always hungry for sweets.                                            -sass-

[rumpled]

Lots of the pit hormone issues have overlap in symptoms - fatigue is a biggie. Weight gain happens with a few of them. Hormones can be subtle or out and out in your face so to speak.

Moon face sounds more like Cushing's however high cortisol usually suppresses IGF-1.

Cortisol also eats bone - lots of bone breakage, dental issues etc. I have lost height from my Cushing's.

Acromegaly usually makes for more bone - even in adults where growth plates are done and teeth will spread and get over or underbite. Voice will change. Usually a distinctive voice change. The hands to get bigger and or feet (I had this with swelling from Cushing's though not to same degree as acro). But like any disease - no one has every symptom. I met some people with it and not everyone looks like the picture.

Have they tested GH? GH is what the pit puts out, IGF-1 is what the body uses (after the liver processes the GH) and they can do a stim test to test for acro as well. It can now be treated medically so it is a lot easier now.

[SassySharon]

okay that makes me feel better.  My GH was low normal.  My endo said he had really expected these numbers to be quite high, from the looks of my hands and feet, as well as my large bones.  So maybe the IGF 1 number was just normal for me or a fluke.  They were just at the top of the range.  My Cortisol was just like 8.0, that test was the only one that did not have the reference range listed, so I assume it is okay.  I just have so many many issues but I still consider myself in good health.  I do not really overthink these things, just very interested in what could be causing these weird things going on in my body.  I just feel like there is something that is causing them.  And maybe I have just become so used to having them all I just try and ignore so I THINK  I am in good health.
None of my doctors really seem interested in getting to the bottom...just treat the surface and hope for the best!?!  I wonder if , oh well nevermind..       overall i look normal, no huge forehad or nose etc.. just this bone in the mouth breaking off(my dentist said to never take Boniva,haha), parotid gland extreme,extreme swelling looks like a tennis ball stuffed in the side of my mouth.  no tumor or stone there at least.  For a petite woman, the large hands and feet look very out of place.  If I spread my hands open from thumb tip to little finger tip it is like 9.5 inches!  So many other things going on too.  Guess I will just have to keep on living with it all.  Thanks so much for your input.                seeking,     -sass-

[rumpled]

I would get your cortisol tested at proper times as in 8am fasting and/or 24 hour urine tests.

Cortisol is rather notable for eating bone - the doc should test it - and one test does not suffice as it can vary widely.

Is your endo a neuro-endo, or a regular endo?