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Endocrine Update

I saw my endocrinologist yesterday.  I went in thinking I was going to have another surgery pretty soon, but I was wrong.  Apparently my parathyroid hormone is elevated (which I already knew), but my calcium is borderline and my Vitamin D is low.  She wants to see all these levels again once my Vitamin D is normal.  She also wants me to see a genetic counselor and have genetic testing because that would change the surgical approach.  I didn't understand this because she also said having these two tumors (2/3 sites for MEN 1) means I have to have yearly screenings anyway for more tumors.

I was a little disappointed, I do not want to have another kidney stone and was hoping to get this easy surgery (that I talked about needing 4 years ago) done with.

I have been upset about this new diagnosis of multiple endocrine neoplasia type 1 (otherwise known as MEN-1).  It means that this endocrine storm will NEVER end, and I will continue to have tumors and surgeries and hormone imbalances for the rest of my life, and there's always the possibility of having a malignant tumor, most likely in the pancreas.  It's a lot to stomach, and I feel like I'm not getting the reactions from other people that I would expect.  Most people don't know what it is, so I have to explain it, and I noticed with Cushing's, each surgery got less cards, less visitors, less everything.  I get why that happens, but it doesn't make it easier to get less support each time.  I did reach out to some of my friends earlier this week when I saw my lab results, which was nice to hear how people love and support you. It never get's old, believe me.  Anyone with any kind of illness could use support and love from friends and family.

This post is especially helpful for anyone wondering what they can do for something that's going through a lot.

In other news, New England is in the middle of a big snowstorm, where I live should have 2 feet of snow by morning!  Massachusetts even had a driving ban starting at 4pm to clear people off the roads so they can get to work. Update - I lost power while writing this and am finally posting from my Aunt's house in RI where they have power and heat!

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