MENS: Multiple Endocrine Neoplasia Syndromes

It looks like we've made this young lady kind of famous the way this picture has brought traffic to this blog.  So this article is about a very special young lady and her struggle with a very different disease which virtually mirrors Cushing's Syndrome, MENS, or Multiple Endocrine Neoplasia Syndromes.  Her name is Brandi Fouche, and she and her mother graciously gave me permission to use this photograph of this young lady when she posted it to a private forum for people with Cushing's syndrome because she was essentially the poster girl for the disease.  It took some courage in my book for a teenager in her shape to pose for a picture in a bikini to show a forum she had the classical look of Cushing's, much less to let me expose her to public view to help those seeking information about their own health problems.

A few months ago her mother, Nancy, informed us that testing had revealed Brandi suffered form a form of MENS instead of Cushing's.  Because of what it does MENS often raises the cortisol levels just like Cushing's Disease/Syndrome with the same predictable results.  However, MENS is a more serious disease.

That's because Neoplasias are tumors that form in two or more endocrine glands at the same time and can have multiple affects..  As we found out in exchanges with Nancy they can spread to the lymphatic system, which is an ugly scenario any way one look sat it.  When the tumors grow in the glands they affect whatever hormones are produced for the worse.  So when they take up residence in the Adrenal glands watch out for both Cushing's and intractable hypertension pretty much at the same time.  MENS comes in two types with the second type in two variations

MENS Type I

This is from the Merck Online Manual:

People with multiple endocrine neoplasia type 1 develop tumors, or excessive growth and activity, of two or more of the following glands:

• The parathyroid glands (the small glands located next to the thyroid gland in the base of the neck)
• The pancreas
• The pituitary gland
• The thyroid gland (less often affected)
• The adrenal glands (less often affected)

Depending on which glands are tumors and where those with MENS I will have multiple problems.  One could see a combination of any of the following:

Low blood sugar.

Intractable high blood pressure

Gigantism

Cushing's Disease

Menstrual abnormalities and breast secretions while not nursing (in women).

Peptic ulcers

Decreased sexual desire and erectile dysfunction (in men)

It appears that MENS I will have a familial history, though, with the relatively recent recognition of the disorder and difficulty recognizing the Syndrome that history may not be known.

MENS Type IIa

 Once again from the Online Merck Manual:

People with multiple endocrine neoplasia type 2A develop tumors or excessive growth and activity in two or three of the following glands:

• The thyroid gland
• The adrenal glands
• The parathyroid glands  

People with this disease often develop thyroid cancer.  They'll often have intractable high blood pressure.  They can also develop kidney stones.  Once again there does seem to be some family association with this form of MENS.

MENS Type IIb

Lastly, from the same Online Merck Manual:

Multiple endocrine neoplasia type 2B can consist of

• Medullary thyroid cancer
• Pheochromocytomas
• Growths around nerves (neuromas)

This is the scary kind because of its association with cancers.  It is not considered familiar instead being a genetic mutation.  Because of that it can show up as early as three months of age.  There are also often other abnormalities associated with it.  The link i provided to the Merck Manual has more detail on these and other things associated with the other types of MENS as well.

Diagnosis

There are DNA test for this disease.  A doctor may also order a nuclear scan of the body to detect the tumors.  The test is done by injecting a special nuclear die which will concentrate in areas of high blood usage and then a scan is done with a detector which maps out the areas of concentration.   Other testing, such as hormonal tests may lead a doctor to suspect and test for this condition.

Treatment

The treatment is to go in surgically and get the tumors out.  It may require the complete removal of the thyroid or one or both of the Adrenal glands.  So treatment can be a rather expensive proposition.  

I've missed the latest of my friend, Brandi, and i don't have the link I'd planned on including to help her and her family out on the medical expenses.  When I get it I will come back and edit this article to include it and send it back out for folks to see.  Brandi has a rough road and this has affected her health and some of her familial relationships.  Her mother is in her corner for sure and so am I.