high vitamin D normal calcium

[sdevine]

I went in a few months ago for recently worsening problems of neck muscle spasms, constantly feeling tired, crabby, eating a lot because I was so tired.  We tried vitamin D3 at 50,000 a week which after 2 weeks made me feel 99% better, amazing even.  I noticed my muscles had been weak where before I thought I was just out of shape.  It  was amazing.  After 1 month my neck spasms even went away.My appetite went back to normal, my headaches went away.    My BP was never "high" but it was high for me.  After the vitamin D, it went back to normal for me, which was about 85/55.  So then after 3 months I got my vitamin D level checked and it came back "critically high" at 133 (I believe the high cutoff was 85).  

So they told me not to take it anymore.  After 2 weeks, my symptoms came back (not much neck spasm yet) but it is AWFUL going back to that feeling.  

So they tested my calcium and PTH.  THe calcium came back 9.4 (normal) and the PTH won't be back until Monday.  Potassium, hemoglobin, TSH, free T4 were all normal.

My mom's parents both had high calcium late in life, grandma with kidney stones.  One was eventually found to have a parathyroid tumor.  

Now here's my question.  With a vitamin D level that high, shouldn't my calcium be high?  Won't the PTH be wrong since (I think) vitamin D being high would lower that?  What else would cause me to have such symptoms, then symptoms be gone while on Vitamin D and come back when off of it?

[Mark Lupo, M.D.]

133 is a high level for 25-OH-D, but the timing of the D2 (not D3) 50,000IU dose should be kept in mind when interpreting this.  If the calcium and kidney test (creatinine) are normal, then the high vitamin D level is not causing a problem.  You may need to consider changing the vitamin D to every 2 weeks or taking an over-the-counter D3 (ie 1000-2000IU daily).

[sdevine]

Just adding that I also had muscle aches, cold intolerance, bone pain and these symptoms started (though were not as bad) 6 years ago.  They only recently last year got BAD.  

[TamraW]

Sdevine, did your endo order serum calcium tests? Those are more accurate in checking for parathyroid disease.  My PTH ranges weekly from the 40s to 70s. My D was low and I felt awful, but now it's back up and I have no more muscle cramps but the GERD and migraines are far worse. From what I've read, many people with hyperparathyroidism have low D levels.  

People with parathyroid disease can have normal calcium one week and high another, so the surgeon I spoke to said I needed tests weekly for four weeks. It looks like I have to get more tests, so my saga isn't over, yet, either. I wish you the best of luck.

Also, here's a GREAT site about parathyroidism: www.parathyroid.com

Tamra

[TamraW]

Oops, my brain is not working properly. I'm really sorry for posting in the expert forum. I just noticed after making two separate posts. I wrote the above post, but I'm not a doctor.

Sorry,
Tamra

[sdevine]

Thank you for responding Tamra.   I actually was seeing an NP.  We thought I might have low D so she put me on it.  Then after 3 months we decided to see where I was and that's when we found out it was high.  So she said I probably never had low D to begin with as it would probably still be low.

I just got my other labs back and the PTH and Lyme's were normal.  They didn't give me a number for the PTH.  I believe with my D being so high,  that could cause the PTh to go down but no one seems to know.  They want to refer me to pain management (I am not in pain--ugh) don't want pain meds.  I want vitamin D which helped--- or figure out what else is wrong.  Or they said endocrinologist but they didn't think they would find anything because my labs are normal.

I am hoping that maybe the endo will retest me to see if my levels fluctuate.  The vitamin D wasn't out of my system when they tested me.  I will go in a few weeks for that test but I really am going to keep taking it as I cannot function without it, but I will only take it every other week.  If my calcium levels were high,  I wouldn't take it,  but they are normal.  Makes no sense to me at all.