Hyperparathyroidism?

[HypoWhat]

I'm really hoping you/someone can shed some light onto some of this for me.  I will admit that I have a bit of anxiety problems (mostly due to hypochondriasis), but I started to have some real issues a few months back.  It seems like, so far, no one can figure out what's wrong.  I have seen three endocrinologists, and I'm still seeing one who is running more tests.  I'm really concerned about my calcium levels.  I've had a ton of symptoms, but some may or may not be related to the calcium, though.

My dr's have checked the following, which all came up normal:  Chromogranin A (normal), PTHrP (normal), Plasma Tryptase (normal), Plasma-free Metanephrines (normal).  Vit D 1-15 Hydroxy (it was like 60...but normal)

The following were not normal:  Vit D 25 Hydroxy (active form...in case I have them backward), it was 10.3.  
Calcium over the past 6 months (chronological order):  10.6, 10.3, 10.3, 10.4, and 10.2.  At the first 10.3 reading, my PTH was 24.  At the 10.4 reading, my PTH was 32.  The real confuser, though, is that on the first 10.3 reading, my Ionized calcium was 5.3.  According to the test, 5.6 is the highest normal value, so my ionized was normal even though my total calcium was elevated.  My albumin has been the highest normal value, too, and I'm wondering if that has something to do with my calcium.  They also ran a 24 urinary analysis, and my calcium was (I think) 198...I know it was normal, but in the upper range.  

I have a family history of multiple myeloma, and my dad has a carcinoid tumor.  Supposedly,  the chromogranin A rules the carcinoid out, and my regular doctor says my protein isn't high enough for myeloma (the endos haven't said anything about that).

A lot of the information on parathyroid.com says my PTH should be really low, if my calcium is that elevated, but it doesn't seem like the endos I've seen necessarily agree.  They just say my PTH is normal.  That Dr. Norman in Florida seems to be the "expert" on the subject, but unless someone is pretty sure that's my problem, I can't afford paying 1400 to go see him.  My second endo was convinced I was having a hyperparathyroid problem, until I had a neg Sestamibi Scan at Baylor Univ in downtown Dallas.  (I have the images, but it just looks like dots to me.  You can't even tell what you're looking at on the actual Tc-99m scans.  Anyway, she still says she thinks I'm in the "beginning" stages, but she wants me to try taking the Vit D to "see what happens."    Well, I'm not really comfortable being an experiment.  She says that no surgeon will touch me at this point.

All of my other blood  work has been pretty normal except a low B-12, which is coming up with supplements, occasional elevated hemoglobin and hematocrit (but my anemia panel and some type of "smear" shows no red blood cell problems or abnormalities), and a positive ANA (supposedly I have mildly elevated anticardiolipin antibodies (IgA).  

My newest endo is running blood tests (on Tuesday) to check testosterone, LH, and Cortisol.  He wants me to take Vit D supplements.  However, I'm really scared to.  I have read on www.parathyroid.com that taking vitamin D will ONLY make your calcium go higher.  I'm already having tons of heart palps, and I'm scared they will get worse.

I've had waves of symptoms over the past few months, which also complicate things.  I've had fatigue, off-and-on headaches, bone pain, costochondritis, acid refulx, lots of muscle pain (maybe tendons, too), joint pain, muscle spasms, sometimes trouble staying asleep, odd "vibration" sensations throughout my body, numbness/tingling in limbs (mostly feet and occasionally leg), erratic blood pressure (really high and then back to normal...but it's been more consistently normal the past few weeks), and it seems my heart does the same thing....slow sometimes...fast sometimes.  Oh, and also occasionally have had really bad orthostatic hypotension (I assume...when I stand up my ears pulse and I feel dizzy for a few seconds while my heart pounds slowly).  

I'm only 27 years old...and I'm just at a loss at this point.  I want to feel better/normal again!

I was on antidepressants for 3 years, and I got off of everything in December.  I had started switching them up about a year ago because the one I was on stopped working (I though), and I started to become VERY intolerant of alcohol. I finally had to stop drinking any in February of this year.  I know all of this is NOT just anxiety because I have had to take Xanax fairly regularly lately, and while it calms me down, it does not stop these symptoms.

I appreciate any guidance.

Thanks for your time!

[Thypatient]

Boy, that’s a tough one.  Your calcium levels would be a bit high, at least according to the lab I go to.  Plus you have symptoms.  But the thing that would seem to throw off a diagnosis, to my knowledge, is your age.  You’re young to have hyperparathyroidism.

“My second endo was convinced I was having a hyperparathyroid problem, until I had a neg Sestamibi Scan at Baylor Univ in downtown Dallas.”

Here’s the part to really disagree with.  Especially since the dr was convinced before the test.  My scan came back negative and it was done ‘after’ it was blatantly obvious I had hyperparathyroidism and something really serious was causing it.  During surgery the something really serious was a big tumor.

Though I like and respect the dr in Florida, I don’t think you need to go that far right now.

I have read of parathyroid issues overlapping with other issues.  So, this all could be part of something else (don’t want to scare you though; it could be something else or it could be nothing too).  Also, I’ve read that ongoing monitoring and blood tests are done for a while before determining what’s going on.  So that might end up being your course.

Let’s see what these latest test say.

Honestly, I’d be up in the air on the vit d experiment too.

Keep us posted.  Good luck.

[HypoWhat]

Oops. I meant Vit D 1, 25 Hydroxy (not 15).  Also, my Vit D 25 (active) was 10...not 10.3.  

I should also mention that my thyroid is normal; while I have possibly mild goiter, the numbers are fine.  

Also, I have had very bad flushing over the past few months, too.  I've always had "rosie" cheeks, but it's gotten a LOT worse, and it sometimes shows up on my neck and chest lately.  It shows up even worse in the heat/sunlight, which makes me feel ill usually.

I forgot to mention, too, that when this started a few months ago, I was also having dizzy spells and nausea.  (Seriously, it's been a rough few months of waiting.)  My chest goes numb sometimes (on the skin/muscle), but I'm having an EMG on Monday for that.